Patient Centered IT

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Posts by Dr. Christian Seebode:

A Patient Centered Infrastructure – Part 5 – Knowledge Management

September 3rd, 2021



This is part 5 of the series on the Patient Centered Infrastructure.

It documents knowledge management as a part of the Patient Centered Process:

• Profile(Data)
• Information Retrieval(Information)
• Knowledge Management(Knowledge)
• Education(Skills)
• Medical Services(Interaction)

Summary for TLDRs;

Patient knowledge is not only one collateral result from healthcare processes it is an important factor for most results and outcomes. Patient knowledge is a necessary prerequisite for the best possible result and outcome. In fact it is an outcome category which needs dedicated attention to be improved. Autonomous and empowered patients learn from their actions, feedback and results. They are able to collaborate to make the best decisions  according to their knowledge. Giving people the possibility to express their knowledge and to access and manage it supports them in learning the best way to achieve the possible outcome. At the same time medical science and healthcare delivery services can benefit from existing patient knowledge.  But this is not happening in a systematic way.

There is no systematic support of patient knowledge in daily healthcare practice, especially not in collaboration with patients.



With extra motivation from an example of patient-led research for #longcovid in the situation of a devastating pandemic we will develop intuition and analyze the need for a learning cycle to give patients a possibility to learn and build up knowledge in their particular situation in collaboration. This knowledge is the necessary tool that provides patients with the capability to make decisions. Even if we see technology as an enabling factor to make all this possible, the most important piece is a change in mindset for all participants and collaborators. Putting it all together, patient knowledge is an important factor in determining individual care and improving individual outcomes. Capturing it for the individual patient and for medicine in general is an important step for the future of healthcare

Introduction

At the beginning just a quick reminder. What is the problem we are trying to solve with the Patient Centered Infrastructure supporting the Patient Centered Process ? 

The patient role is far too passive to achieve the best possible outcome. Patients are following orders in many cases and usually don’t make the decisions. This has consequences. Being passive leaves you in a position where it is much more probable that not the best possible result is achieved. Passive patients are not in control because they possibly don’t exactly know and don’t understand what is happening with them. 

To create an analogy we imagine patients not as drivers but passengers of the healthcare train. And they travel in freight cars. Packed and stowed together with other fellow passengers, because all that matters to take them from A (disease) to B (health) is their size.  (In the sense of measurable physiological values. For the sake of this analogy). Apologies for this provoking statement but we will see how true this actually is even if we want it to be wrong. This is also curious because this train drives through their body. 

Would you allow somebody else to drive it? Yes, you would. And you also should to some extent. Medical science and healthcare has developed incredible tools and processes that help you travel safely from A to B (and sometimes back unfortunately). But you can do better. Much better. After all it is still your body and you know it best as a patient. Do you?  Now the big question is how much of the things that healthcare actually does is controlled and understood by you? And why is this important?  It seems intuitively reasonable that you are in a much better position when you know and understand your situation better and you can communicate better about what you need and how you want to get it in the given situation. 

But these decisions are usually not taken by patients. They are at most discussed with them but with a big uncertainty about how much actually is understood by the patients. 

As a part of the Patient Centered Process we will take a look at patient knowledge and how it can be used to improve outcomes.

Patients know a lot. Much more than is appreciated by medical practice This bears some incredible potential both for the individual patient as well as for medical science.

The individual patient level



Patient knowledge cannot exist disconnected from general medical knowledge used by doctors, experts and providers. But patient knowledge reflects not only what patients know about medicine, most importantly it reflects knowledge about themselves and their situation. Medicine traditionally tries to generalize facts from a patient history to build diagnosis and treatment plans. This medical reasoning has a sound scientific foundation. But every patient is different and responds also differently to treatments. Positioning patient knowledge as a differentiating factor between patients enables new possibilities. Patients that understand  their behaviour in relation to their knowledge are able to understand what is different from other patients. This is important both for patients and doctors. Much more if this refers to facts that don’t correspond general medical knowledge

Using knowledge as a tool, patient generated as well as general medical knowledge, calls for an understanding of the way knowledge is created and the impact knowledge has on the individual health of each patient. In this sense we can refer to patient knowledge as an outcome category because it was created from experience and  it impacts the health and well-being of patients.

Patient knowledge refers to personal experience and goals and influences an individual clinical and learning path. This is an important contribution for personalized medicine

The level of many patients and medical science

Medical knowledge traditionally represents generalizations over a huge number of patients. To understand biology, medicine and treatments assumptions and generalizations are made based on observations well defined statistical and empirical methods.   

This knowledge is powerful and limited at the same time.

It is powerful because this kind of knowledge tells you with a high confidence what is right or wrong about a patient that was never seen before. But sometimes this knowledge is not precise enough. Biology and medicine is much more diverse than the tools we use to understand it.

In order to systematically capture patient input increasing attention is directed towards PROMS (e.g. Diabetes PROMS: https://www.jmir.org/2021/8/e25002) which are mostly validated and partly may also represent patient knowledge and subjective beliefs. 

Patients already can provide input, experience and knowledge in many ways (PROMS, health data). This usually has positive effects on collaborations but may also have negative effects if not handled carefully. This information comes with additional expectations from a patient perspective https://journals.sagepub.com/doi/full/10.1177/1460458220928184.

Additionally we can observe a tendency to extract patient related information and knowledge from social media sources like Twitter or Facebook. This requires not only a very sophisticated toolset able to extract information from unstructured sources but also a profound understanding of the context of the source. These data may contain a lot of bias and potentially lack precision (like e.g. the first generation of Google Flu Trends https://en.wikipedia.org/wiki/Google_Flu_Trends).



Why not collect patient knowledge directly in the first place?

Patient knowledge is different. It emerges and needs no general validation to provide value to an individual patient. It is just used as a pragmatic support tool. General validation sometimes doesn’t even make sense. But for a wider adoption of the individual significance of knowledge acquisition more profound methods have to be developed. To establish knowledge as an outcome measure and consequence of patient actions and/or to use it as a predictive (digital) biomarker for disease pathways, traditional ways to provide evidence won’t work and need to be improved. The subjective nature of knowledge as a consequence of received information (http://patient-centered-it.com/2021/01/06/information-cures/) is not easy to operationalize scientifically but an innovative and promising way to approach the future of healthcare (https://rockhealth.com/reports/the-emerging-influence-of-digital-biomarkers-on-healthcare/).  However one way to develop these methods is to build collaborative infrastructures that are able to collect all the information needed to drive methodological research.

Patients can contribute their knowledge to the body of knowledge in medicine supporting other patients and healthcare delivery. (We will see about that: #longcovid)

As knowledge tends to be subjective in nature and is much more evasive than other outcome measures, we also need to prepare for misuse and unwanted side effects of knowledge. Patients may  be overconfident in having the right knowledge to justify decisions. This puts a lot of pressure on trust structures. 

The level of the Patient Centered Infrastructure

Supporting patients in acquiring more knowledge means that we need to build healthcare systems that support knowledge and patient education in the first place. Knowledge needs dedicated support and management. The organizational structure of these support systems is the Patient Centered Infrastructure.

This refers to technology but most importantly it requires the right mindset and process towards a better and more effective collaboration with patients.

What is patient knowledge and why is it important?

Let’s build some basic intuition about the role of knowledge for patients.

Having knowledge as patients we can do meaningful things like asking more precise questions or collaborate to decide on a special kind of treatment.  We use knowledge to perform actions according to this knowledge. 

Actions generate new information which we can use again for understanding the results. We learn from it by education or training and generate additional knowledge. This means knowledge has to be acquired through a learning or training process.



This diagram shows the intuitive model we just created.

• Entities
  • Information
  • Knowledge
• Processes
  • Training/Education
  • Action

Let’s use this model to fix a  

Definition

Patient Knowledge is what patients learn from the information they generate by performing health related actions

This might seem very basic to you. Right. The problem is: Patient knowledge is not systematically supported and evaluated in medical practice. 

Assume for a moment that the actor is not the patient but the doctor. We would expect that the knowledge the doctor uses is state-of-the-art medical knowledge. This knowledge is generated, assessed scientifically and educated with a tremendous effort.

But patient knowledge?

Of course patients learn. They have expertise about their individual situation and course of disease. This expertise is one of the most valuable resources in healthcare and mostly unused in medical practice. 

Patients sometimes ‘undervalue’ their own expertise in encounters with physicians but also feel often incapable of acquiring ‘complex’ medical knowledge at the same time. And even if they have the knowledge they don’t feel empowered to use it. https://www.researchgate.net/publication/259201294_Knowledge_is_not_power_for_patients_A_systematic_review_and_thematic_synthesis_of_patient-reported_barriers_and_facilitators_to_shared_decision_making

So, what exactly does this mean? According to our model above, the cycle that we intuitively created doesn’t work in reality for patients. Patients sometimes get feedback on their actions but this is often not part of some educational exercise. They don’t know sufficiently what they learned and what not.  Their knowledge and ‘expertise’ is also not valued which makes it even more difficult to enter a cycle of continuous improvement. 

Patient education takes time and needs a systematic approach. It is reasonable to support learning curves of patients with a possibility to access and ‘manage’ their own knowledge as part of an individual learning experience. https://www.researchgate.net/publication/261026448_A_New_View_of_Patient_Education_How_Information_and_Knowledge_Management_Can_Contribute_to_Patient-centered_Health_Care

In fact all these necessary developments will happen one way or the other. The interesting part is to envision the share of responsibilities and tasks as the path to a future healthcare unfolds itself https://www.researchgate.net/publication/323403655_E-patients_hold_key_to_the_future_of_healthcare

Health Literacy

Talking about knowledge it is also necessary to mention Health Literacy

Health Literacy is defined as  

‘the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.’

https://nnlm.gov/initiatives/topics/health-literacy.

Also there is a load of tools available to measure health literacy: https://healthliteracy.bu.edu/

But the relationship between health literacy and health knowledge does not seem to be clearly defined.

https://www.researchgate.net/publication/299543089_What_do_we_know_so_far_The_role_of_health_knowledge_within_theo-ries_of_health_literacy,

Linking health literacy to health actions and finding the right place for health knowledge is essentially what we want to understand https://www.researchgate.net/publication/23194815_Health_Literacy_and_Health_Actions_A_Review_and_a_Framework_From_Health_Psychology.

We could understand health literacy as the ability to actually perform the learning cycle. But this is only a partial understanding. Health Literacy is a much more complex category. We will skip further discussion until we focus on education and health services in upcoming posts for the Patient Centered Process. For now the focus will remain with patient knowledge.

Knowledge Management in the wild

What happens out there is quite remarkable. Patients suffering from #longcovid became active.



‘Patient-made Long Covid changed COVID-19 (and the production of science, too): analysis of patients’ epistemic contributions to a new illness’

The COVID pandemic has put patients and scientists into the same position in terms of knowledge about the disease: to the very start.

This led to a remarkable development where patients initiated their own research and collaboration. 

‘…Patient contributions are individually, collectively, and anonymously authored; most have emerged through collective sharing with other patients experiencing long-term symptoms and sequelae. A non-exhaustive list of contributions across multiple media includes: oral, written and visual narratives, testimonies and arguments; quantitative and qualitative research; grey literature, essays, opinion pieces and commentaries; and advocacy and policy interventions….’

And privacy and security concerns found their natural priority, choosing public disclosure and personal history and reference to support goals and collaboration.

‘..Many patients amplified the #CountLongCovid campaign by testifying to their changed lives. For example, in September 2020, a Tweet by Talya Varga, which developed into a long thread, combined the hashtag #CountLongCovid with the phrase ‘Six months ago’ and photographs from people’s pre-Covid (and sometimes post-Covid) life to mark the debilitating effects of infection half a year on, which left many confined to their bed and/or requiring a wheelchair…’

Their technological choices were spontaneous guided by available options but also are showing what serves the need for collaboration.

‘…As patients created, at speed, a new illness, they disrupted conventional scientific modes of doing research, creating knowledge, gathering and disseminating evidence, and building clinical archives/datasets. Tweets, Facebook posts, contributions to Slack and WhatsApp groups, patient-led reports and surveys, blogs, opinion pieces, and conversations between patients preceded the formal generation and dissemination of data about long-term symptoms and sequelae by conventional researchers, particularly for those not hospitalized. Some of the largest archives concerning Long Covid symptoms are currently found under hashtags (e.g. #longcovid, #apresj20), and within private/semi-private patient support groups (e.g. Body Politic COVID-19 Support Group https://www.wearebodypolitic.com/covid19; Long Covid Support Group https://www.facebook.com/groups/longcovid/)….’

Popularity of platforms helps with dissemination and collaboration. 

I can only second the conclusions and hope this shines beyond #longcovid and research  into other phases of individual pathways. 

‘…This poses complex questions – both conceptual and empirical – concerning how patients individually and collectively contribute knowledge, how patients’ epistemic work in relation to Long Covid differ from patients’ epistemic contributions to other illnesses, as well as the routes through which patient knowledge is taken up into conventional scientific research…’

‘…This has implications that go beyond the current COVID-19 pandemic in terms of the renewed necessity of involving patients – substantially, and justly – in the building of medical knowledge…’

What can we learn from this?

This example shows the need, actions and results of a patient initiative. It contributed to a better understanding of the disease. The intuition we developed points in the right direction. There is a tendency to learn from experience and for collaboration in favor of improving knowledge and outcome. 



Whos in? 

Designing Patient Centered solutions requires a change of perspective. This is a hard switch because this perspective is so undervalued and underrepresented (see above and https://www.ajmc.com/view/patient-perspectives-must-meaningfully-inform-healthcare-value-measurement). 

Assessing values from a patient perspective needs a consideration of patient knowledge and experience.  Supporting the patient perspective and giving control to patients does mean patients are supposed to act autonomously but not isolated. Collaboration between patients and physicians/providers. is an important part of the learning cycle. The physician/provider is supposed to provide knowledge and feedback. This can only work if a bidirectional channel exists between both sides where information flows unhindered. 

• As a patient I want to get feedback that I can understand and/or get training to be able to learn and discuss my situation or give feedback to adapt all actions that help me to reach my goals.
• As a physician/provider I want to give feedback to patients that they are able to understand and/or give training to educate patients to learn and discuss their situations or get feedback to adapt all actions that help my patients to reach their goals.

This implies that knowledge has to be leveled. But this is difficult in real life.



This diagram tries to build some intuition around the knowledge flow between doctor and patient

• Patients receive knowledge from physicians/provider but are able to understand only a part of it
• Physicians/Provider receive patient knowledge but are not able to process it completely
• Physician knowledge is mainly based on medical education and training (which includes also work experiences)
• Patient knowledge is mainly based on own and shared experiences and some other information sources
• Most of the knowledge is based on medical science but potentially not all of it. Especially not on the patient side.

This intuition may not be completely right, but it surely is not completely wrong. Main aspect is that a knowledge transfer, especially not in the sense of a structured and targeted learning experience, is not happening in a systematic way for patients.

This diagram highlights the important roles we need to look at.



These are the most important roles that contribute to the goal to increase patient knowledge. But before it gets too abstract let’s have a look at an example to illustrate this.

An example

Imagine a diabetic patient that suffers from blurred vision. The patient knows about the diabetes and takes medication. For him (or her) the vision problem is not related to the diabetes condition in the first place. Once he gets examined the physician finds indications for diabetic retinopathy. The doc then looks also at some lab values and changes the medication and the patient gets home with it. The doc mentions the term ‘diabetic retinopathy’ but without any explanation that one condition leads to the other. Or maybe she (or he) explains but the patient doesn’t get it because it is not explained in an understandable way. It is also possible that this is something that this patient already heard about earlier but doesn’t remember at this point. There are many possibilities why the patient does not understand the situation the same way the physician does https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5813310/.

At the same time there are lots of possibilities why a physician doesn’t see the complete picture. Lack of time, expertise, information … https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6901889/ 

All this might also lead to a lack of precision listening to and examining patients for signs and predictors of diabetic retinopathy.

The result of this interaction from the patient’s perspective is a new medication, little information but possibly no knowledge at all.

Even if patients understand the link between glycemic control and diabetic retinopathy they most probably don’t get the whole picture, when they should https://pubmed.ncbi.nlm.nih.gov/23797359/. Also the presence of expert knowledge seems to be not enough. So, what is missing?

Let’s take a pragmatic approach and design different outcomes in order to find out.

The physician asks questions and takes actions with the patient mainly in a passive role. We can imagine different scenarios that can describe and change this … 

1. Scenario 1 (BLOCKED): Patient receives new medication (our example)
2. Scenario 2 (EDUCATED): Patient receives new medication and indications about how to adjust behaviour
3. Scenario 3 (AUTONOMOUS): Patient learns the complete understanding of the situation and decides after discussion with the doctor on the best way forward and next steps and receives and understands feedback

Even if there is more grayscale in between, these scenarios show reasonable possibilities that help us to understand how to support our goal (increase patient knowledge).

Scenario 1 (BLOCKED): Patient receives new medication 

Would she or he actually take it? The main driver seems to be the burden of disease. But patients new to the disease and/or considering themselves healthy are at risk of non-adherence.  

https://care.diabetesjournals.org/content/38/4/604.

Some factors that are correlated with non-adherence.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4966497/.

Strikingly enough factors associated with non-adherence are subjective in nature: perceived treatment efficacy, medication beliefs, physician trust. But in this scenario no one will improve these factors and the only feedback the patient may get is from a change of symptoms. One of the worst factors of this scenario is that possible success (improvement of symptoms – which is great) will most likely be attributed to the doctor by the patient, and not to her or himself.  This is possibly the biggest challenge on the way to becoming an active participant. It is so convenient to stay passive, why be more active? Everybody else works but not me. This is so wrong. Even in this scenario an active role can improve outcomes. But these activities are limited (e.g. following orders). Because of these limits many possibilities for failure exist.  

This is the BLOCKED stage from a knowledge support perspective: knowledge is not allowed to flow freely between participants.

Scenario 2 (EDUCATED): Patient receives new medication and indications about how to adjust behaviour

This is more challenging. Adjusting behaviour is not just performing an order. We saw that the order to take medication may or may not work. To change behaviour successfully, consistently  and permanently it requires at least some subjective understanding of what is better about the change and what was wrong before it. This is necessary to keep going when it becomes hard and complicated. We can imagine some dietary recommendations to perform better glycemic control.  This is especially hard for obese, type 2 diabetes patients. So depending on the type of goal, self controlled action and motivation is necessary.  This is the chance for entering the learning cycle to experience a real learning curve. How do I know that I am doing well? Do I need to  adjust my behaviour? What are my goals and preferences? This can be the first opportunity to kick-in Patient Centered values. But most probably this is not happening to junior scenario 2 participants. Endurance is needed. Any effect will not be immediate but  needs constant feedback in order to engage and keep going. In the best case this results in some form of education (education is a step in the Patient Centered Process and will be documented in an upcoming post) which then helps to improve the chance of entering and staying in a continuous learning cycle.

Most importantly patients learn about their influence on the course of the disease. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5813310/

This paper gives an example how patient education can improve control of prevention and progression even if in general communication is poor about both aspects. Education helps to understand the information quality. This is the EDUCATED stage from a knowledge support perspective: knowledge flows to some extent between participants. Knowledge is associated with goals and the necessary behaviour. Patients are entering a learning cycle.

Scenario 3 (AUTONOMOUS): Patient learns the complete understanding of the situation and decides supported by the doctor on the best way forward and next steps and receives and understands feedback.

Beyond scenario 2 the world is wide open. We can understand scenario 3 as the patient being able to understand, plan and execute the necessary actions to improve outcomes. This means to run the complete learning cycle autonomously. Learning happens incrementally. This means also that the patient understands the situation, options and also feedback in order to improve the disease situation and learn from it. Most importantly the patient also understands what is missing or needs to be improved. This includes also understanding that knowledge is missing and the understanding of failures. In particular the situation includes all necessary Patient Centered goals and values. The autonomy allows patients to judge all actions and results in relation to their goals and values. To continue the example from scenario 2 patients are able to calculate the exact diet to maintain a healthy blood glucose level on their own. They do this according to their taste and daily rhythm. Together with their doctor they are able to plan lab measurements according to their need and understand the consequences. Being active they ask questions according to knowledge they miss and maybe also related to answers no one knows. Driving further research.

This is the AUTONOMOUS state from a knowledge support perspective: Patients are able to run the learning cycle autonomously. They understand situations, options and feedback in order to adapt behaviour in every increment of the cycle. They decide autonomously  supported by doctors and are able to provide knowledge and feedback. Doctors are able to adapt action according to the individual needs and goals of patients

The following diagram summarizes the scenarios



Adding the HOW level now uncovers, that scenario 3 is by far the most complete situation. All 3 roles contribute to it. Most importantly all 3 roles benefit from it. It supports the availability of patient knowledge for physicians/providers and other patients in a systematic fashion. 

These scenarios are supposed to represent different maturity stages supporting the goal. 



This diagram shows the most aspects that are increasing/decreasing when maturing. In general patients are becoming more autonomous from left to right. Whereas they initially get only spontaneous instructions and feedback, they continue their journey to autonomy by requesting it more frequently until they are able to give instructions and feedback because they control the process.  

The Knowledge

There are at least 3 different levels of knowledge involved which include the understanding of the situation, the process and next steps and possible outcomes. This means patients (and all other roles) require access to 

• knowledge about their situation: As a patient i want to understand the status of my disease and health in order to be able to understand how successful my therapy is or what is still missing to reach my personal health goals
• knowledge about the process or pathway: As a patient I want to understand the medical process or patient pathway in order to understand my options to proceed and to select the next best step
• knowledge about the disease and known facts: As a patient I want to have knowledge about my disease in order to understand how much I already know and what I still need to learn 



This is the knowledge that patients are supposed to learn. It represents the outcome of the whole learning cycle and defines success.  It is important to note that there are interdependencies between different knowledge types which also influence the type and significance of the decisions based on it. But most importantly this knowledge is a very individual and precise tool to understand what has been achieved so far.

The bigger picture

Now that we understand goals and some dependencies, it is time for the question: ‘How to make this possible?’

There is of course no easy answer to this. The way forward is essentially incremental and iterative. Concrete requirements for process and technology  will be discovered within that development  process with patient participation if not directed by patients. 

One possibility is to engage with the #longcovid community and drive development beyond that prototypical stage it has reached.

But developments can start with every individual patient journey and are not necessarily dependent on technology, at least not at the beginning. But emerging technology will make things much easier.

For example measuring knowledge …

Measuring value

How to measure knowledge? 

This is tricky. We try to continue the pragmatic approach and use intuition to guide us. Looking at the learning cycle it makes sense to measure how well health actions are performed since the actions lead to the measurable consequences. A diet well performed leads to better glycemic control, sport well done lowers blood pressure. Measuring action and process quality seems to be a necessary dimension to measure. But this is not enough. 



We are looking at a cyclic process. If we only look at objective measure we are missing the whole point on individual, subjective influences and knowledge as a result and reason for the next cycle of action.

Shifting the attention to the individual process of every patient will help to shape a more precise understanding of the individual situation. Collaboration and individual contribution need to be shaped and measured. But this is much better with technological support. Tools and services offered by the Patient Centered Infrastructure should support 

• access to knowledge items 
• generation of new knowledge items
• linking between knowledge items
• attaching different semantics to knowledge items
• representing knowledge items in different languages
• references to data sources
• measurement of knowledge items and quality
• comparison of knowledge items and sets
• collaboration on all functions between patients, doctors and all knowledge contributors

This doesn’t mean questionnaires. Patients get access to creational tools to set up their personal knowledge base, which supports intelligent mappings to the rest of the world. The focus is on the individual, not the population.

Let’s have a look at the technological options to do this

Technology

The focus of this post is not technology. It also doesn’t solve all the problems. But it helps to facilitate options. 

To build a technological infrastructure that supports the vision we have developed so far much more work has to be done. But at least we can envision a part of a conceptual architecture, depicting dependencies that we mentioned.

I personally believe that a state-of-the-art representation of patient knowledge can be organized by constructing an individual knowledge graph for each patient. This knowledge graph represents the actual situation of each patient in the learning cycle and links also

• extracted knowledge from external and relevant data sources
• external knowledge representations (existing ontologies and knowledge graphs)
• generated knowledge from automatic logical reasoning on the knowledge graph
• generated knowledge from analytics (descriptive, diagnostic, predictive, prescriptive)
• added knowledge from collaborations

and of course all the knowledge that is facilitated by the learning cycle.

Knowledge Graphs are the richest and most expressive structures to integrate knowledge from machine origin together with human knowledge.



For all these conceptual bullets a multitude of solutions is available. This is also necessary because building this in the real world will trigger  a lot of real life learnings. Most importantly, people need to learn how to generate value from it. This will surely change the picture and render these ideas momentary snapshots. 

Creating the mindset



The #longcovid example showed the role of need but also of opportunity. Patients were not confronted with existing knowledge and established processes. They were able to create their own from scratch. Imagine for a moment to achieve the same result inside the established system, even with patients. I strongly believe we wouldn’t have these results yet. The opportunity to experiment, learn and communicate is vital. The way forward is agile. Any concerns around security and privacy found their place in the priority list in a natural way. Patients and doctors collaborated, some doctors in the role of patients. Perfect. To me the necessary conditions to create and maintain the mindset that supported this are

• focus on learning more than on existing knowledge
• appreciate new knowledge as an outcome
• choose experience as a skill to improve and not to maintain
• fail early and be open to external judgement

This may sound offensive to people who are experts and certainly know their stuff. But the importance of fast learning can’t be overestimated. 

Putting knowledge in the front row raises a whole lot of other questions about authorship and rights. The #longcovid paper also mentions the importance of mindful consideration of patient contributions. Together with the technology also the legal situation needs to change (https://www.jmir.org/2021/1/e16842/)

How can we initialize this in everyday practice, in any general hospital, medical consultancy and other medical encounters?

It is helpful to consider that every patient – physician interaction may start from scratch, regardless of knowledge and experience on both sides. This puts both roles in the same position. Going forward a learning and knowledge process particular to this relationship is created. I will try to give some practical tips to make that happen.

• As a doctor prescribe not only medication but also information. Make sure that your patient understands (http://patient-centered-it.com/2021/01/06/information-cures/) 
• Patients and Doctors be mindful and disciplined in creating a shared knowledge base. You are both in the same situation, trying to make sense of it. Set and share goals and collaborate openly.
• As a patient watch out for your learnings and claim feedback on everything you do. Give feedback as a part of the interaction with your doctor, not only on signs and symptoms but also on the things you know, learned, don’t know and didn’t learn.

 (for starters)

Conclusion and outlook

I tried to show the essentials, the WHY, WHO, HOW and WHAT of a learning cycle that supports learning patients and doctors. Knowledge created in this cycle represents a pragmatic tool for patients to improve their situation at least. Everything covered addresses conscious and unconscious knowledge in the same way but with differences in the way knowledge is extracted. This knowledge is particular to the patient – doctor relationship and can be used as a precision tool as it matures. 

It is an illusion to think that tools and processes supporting patient knowledge can be created inside the existing healthcare system. But it can emerge from it.  Doing this requires the right mindset. This can be created by being mindful of knowledge creation and sharing.

This potentially implements a learning healthcare system with far more precision information than ever before. I personally believe that the systematic research on subjective factors generated by a huge body of evidence from patient participation and knowledge is one of the key elements to understand disease more precisely and individually. I will collect more ideas in upcoming posts. Stay tuned.

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Information Cures

January 6th, 2021



Caring for patients is caring for information for patients. This is especially true as patients are able to care for themselves to a great extent using the right information. This is a call for a rather profound connection between healthcare and information science. Digital health drives initiatives to a great extent but there are many things missing.

As we all are busy participants of the Information Age we are curious to understand what exactly is the Information we are using in healthcare. 

If information cures then it seems to have some kind of therapeutic aspects. This is true although the whole idea is not new. Looking into Wikipedia we can find earlier references about Information Therapy  https://en.wikipedia.org/wiki/Information_therapy.

But this understanding is far too restricted to understand the effects of information on health, healthcare in general and patients in particular. 

The care for health in the life of persons begins quite early not only in disease conditions. We care for our health with everything we do if we use the way of living which is appropriate for us to keep us healthy. Information cures even in the absences of a disease. If we try to understand this better then we must admit that the nature of tools we use being healthy is different from the ones that we use not being healthy. Interesting? For staying healthy we use fitness plans, diet cookbooks and yoga with a much bigger share in informational content. Becoming sick as a patient we delegate everything to other actors. Although this is slowly changing it is still true to a great extent. We change the horses when we get sick. We not only change the horses but we also forget how to ride. But it is still the same life. Being a physician I can’t find anything wrong with it. I’ve been educated to react when patients need help and to cover for their needs. Being a good doctor I also even care for prevention. But no one told me to care for the quality and quantity of information patients are using to connect health and illness directly to keep on riding. 

Being a software engineer i can’t live with it. Trying to understand a problem and solving it I am asking questions also about everything around it and what are the parameters that control the problem and the solution. I need to put this into the same model in order to solve the problem.  I just can’t ignore the healthy state in order to understand the unhealthy state. I use the same model to represent it. Looking at the health situation of any individual patient I find that health and illness are two sides of the same coin and must be part of the same care model. Information needs to flow seamlessly between all actors involved, especially between patients and physicians across the boundaries between health and illness. This claims to build an overarching model to understand the individual health situation.

This has much bigger consequences. Since we are not using the same tools to describe health and illness and we also don’t care about the flow of information we risk failure. Often enough this has fatal consequences.

Integrating health and illness and supporting a seamless flow of information is easier said than done knowing that Information doesn’t flow seamlessly.  Not even between physicians. 

But why is this important? Let’s look at some scenarios.

Conversational therapies

Looking at therapies that are purely conversational it is maybe a little easier to understand how information itself can be the cure in a traditional sense. Psychotherapy tries to improve a mental condition or the well-being of a patient. It relies on interaction between humans traditionally. Modern variants try to give psychological support by using apps or websites and sometimes only conceptually governed by human therapists. There is indeed a growing share of research regarding cognitive behavioral therapy (CBT) provided via the internet (and apps). https://www.jmir.org/2020/8/e18100/

Without going into detail we can conclude that informational conversations can have healing effects even if supported by remote access and guidance. This works mainly because patients are conscious or subconscious but active participants. There even seem to be no difference in effects between clinician based assessments and automated web based assessments. https://www.jmir.org/2020/8/e18100/

However there is not enough evidence how this exactly works for any individual patient in his or her particular context. The way service and app providers can collect and document this evidence in a trusted way (using real world evidence. see below) is missing knowing that patients have to support this and it is also a big effort. https://www.researchgate.net/publication/301791000_A_Systematic_Review_of_Cognitive_Behavioral_Therapy_and_Behavioral_Activation_Apps_for_Depression

Why do therapies fail?

Another interesting aspect of the aspects of information is to understand why therapies fail. Of course there are many reasons but communication failure is among the causes. Often enough false and missing information is associated with communication failure

https://bmchealthservres.biomedcentral.com/articles/10.1186/1472-6963-11-111

https://www.gmc-uk.org/-/media/documents/a-scoping-review-of-evidence-relating-to-communication-failures-that-lead-to-patient-harm_p-80569509.pdf

Supporting a common understanding between patients and physicians taking patient health literacy into account helps to alleviate this problem 

Data Science



The observable tendency to use data-centric approaches in healthcare to discover new information and evidence with artificial intelligence tools  in order to solve healthcare problems is reasonable and makes a lot of sense. Allowing data to inform decisions will broaden the view and support new types of evidence like real world evidence from existing sources.

https://www.ncbi.nlm.nih.gov/books/NBK540112/

https://www.jci.org/articles/view/129197

However looking at the whole spectrum and lifecycle of information in healthcare it seems that we don’t pay enough attention to the moment where information is created. Trying to fix the quality of information with data science methods in order to use or reuse it is far worse than producing the appropriate quality in the first place. But this only works if we support meaning and semantics of information in the moment it is created also to connect it with already existing information.

Cancer

Cancer in some sense is information gone wild and vicious. It summarizes a multitude of diseases and conditions that share common properties on a certain abstraction level. But on the other hand this abstraction is very misleading. A current tendency is to shift the understanding and treatment of cancer towards individual patients using precision information, becoming truly patient-centered

https://www.cancertreatmentreviews.com/article/S0305-7372(20)30057-8/fulltext

From an information perspective this corresponds to the claim to build an overarching model to understand the individual health situation using biological techniques. Precision treatments are a good example of how individual information is used to cure or alleviate an individual disease using biological models.

However the tendency to change methodologies for cancer therapy development and the shift towards more precision also opens the door to use more patient generated or patient reported outcome data that may be generated anytime (real word data. see above). Involving patients as partners in drug developments tries to establish new relationships with patients.

https://www.researchgate.net/publication/335039481_How_and_Why_to_Involve_Patients_in_Drug_Development_Perspectives_From_the_Pharmaceutical_Industry_Regulatory_Authorities_and_Patient_Organizations

The consequent way ahead is to develop the technical, regulatory and methodological framework that supports patients as knowledge and information sources.

Privacy, Security and Trust

When it comes down to health related information people become very serious about security. And this is for a reason. Health related information in its core is the most precious, important and most personal information we have and it deserves utmost protection. This relates to the protection of the individual but also to the information itself meaning no one should be able to provide false information that has health changing consequences. But it happens.



So we need to think about privacy, security and trust in the first place. This also references legal requirements in most countries. This leads to situations where often enough the benefit of sharing information is not considered. In my opinion not sharing information is far worse than doing it within reason and below all necessary precautions. I am not citing all the e-Patient examples here but i want to make a point for the responsible and trusted sharing of information being supported by the patients themselves.  This calls for patient education about privacy, security and trust. Technically this requires a very fine grained privacy and trust model and a very elaborate risk management that is built around the individual risk.

Health information product development

Closing the information gap with patients by means of technology to support health and solve health related problems needs to be done in a coordinated and regulated way sometimes leading to medical devices. These health information products require participatory development between all actors especially patients. In order for health information products to provide effects and be safe it is important to apply a similar regulatory framework as for drug development but using different best practices. Effects as well as risks are rather encountered in increments using information as substance. The challenge is to connect the health information product development to the same domain model or technological basis in order to prevent silos. This is also a service provided by the Patient Centered Infrastructure. Connecting all these solutions and apps requires the Patient Centered Infrastructure and can be supported by the Patient Centered Process.

In this sense the methodological approaches for developing health information products and pharmaceutical products may not be very different. Both industrial approaches should come closer for the benefit of the individual patient

What is missing?

What do all these examples have in common?

Looking at these examples it seems that patient participation and education to use information to the benefit of patients, connecting patients to a methodological framework and supporting them to become the main actors and decision makers is the thing to do.



Information cures only if we collect it continuously, describing health and illness and generating evidence and knowledge from it. The only actor that can provide this throughout the continuum of health and care for a patient is the patient itself and this is for a very natural reason. Information comes as the principal aide to support health related decisions for patients. As shown above this becomes more common practice for lifestyle and health but there is  a huge gap of information when it comes to describing and informing about illness. This gap has to be closed. One important aspect of this situation is that we have a customer or patient centric economy for lifestyle and health information products but a provider centric economy for healthcare and disease. The expertise that is needed to treat diseases is quite significant and it is a human right to get the best possible treatment in a given situation. But why does this change the flow of information away from the patient? This is one of the central topics of this blog and indeed not so easy to solve. The main issue to solve is to support the health literacy of patients in a given situation in a way that they have a working knowledge of the situation to act and make decisions.

Educating patients to manage information to educate themselves and enable them to make or support decisions together with other actors is a huge topic and needs to be done in an agile and iterative way, mainly because it is the best way to adapt to change.

https://bmcfampract.biomedcentral.com/articles/10.1186/s12875-019-0975-y

Educating patients to manage themselves and the information they are using has also a different side effect. Acting patients are welcome as a very relevant source of information and knowledge beyond the things that are usually asked to pin down a diagnosis. Patients are experts. This is one of the most undiscovered areas in medicine.

In a nutshell

• Support sharing of common information models between actors in healthcare across the continuum of care in a patient-centered manner supported the Patient Centered Infrastructure and the Patient Centered Process Establishment of controlled vocabularies between all actors in a healthcare domain especially between patients and physicians.
• Participatory management  and the flexibility to extend these vocabularies whenever needed supporting the individual health literacy of patients
• Educate and involve patients in making decisions and understand their consequences also in terms of privacy, security and trust
• Education of pragmatic information science for physicians and patients
• Connect health app, pharmaceutical and medical device product development to patient generated information supporting real world data, pragmatic clinical trials and innovative trial models

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The Patient Centered perspective on COVID-19

March 16th, 2020



The intention of this post is to describe problems that we are facing with our current information situation given the COVID-19 pandemic in healthcare and opportunities we have to improve this right now, in the near future and long term. This post aims to indicate some directions to solutions or mentions aspects of solutions. I strongly believe technology is advanced enough to leverage solutions but the focus on information technology or Patient Centered Information Technology is not strong enough. I also strongly believe that Information Cures if managed the right way in this and many other situations

This post is triggered by the current challenge that health systems face globally due to the COVID-19 pandemic caused by the SARS-CoV-2 Coronavirus, but it will revisit some of the known arguments coming from the considerations on Patient Centered Information Technology.

The patient centered perspective on COVID-19

In the middle of this crisis it becomes evident that it is essential to view and understand everything from a patient centered perspective since

• Everybody is a patient regarding this pandemic whether ill or not
• Patients are important actors to not only receive information but also to facilitate the right actions and to provide additional, essential information

Even if skills and possibilities are different in the patient population, since some people are working in healthcare and governmental functions and others not, still the basic information need is the same. This pandemic essentially democratizes lots of the information need, possibilities and fears that we are facing regardless of the fact that we are dealing with it or not. This post only mentions some of the important aspects and also reflects only my very personal view and experience.

These are some of the important patient centered questions that I want to mention in the context of the COVID-19 pandemic

• How do I know if I am infected?, ill?, cured?, protected?, at risk? or not?

Answering these questions calls for an official, clear and transparent and understandable explanation of the current disease that is comprehensive to everybody in the patient population. It should be based on the most current evidence. Since the disease spreads quickly all information should be updated in real-time from an authorized source. Additionally, it needs to be known how the assessment for each question is actually done and where and how this information can be accessed. In fact, the real challenge here is not to update the information in real time (many advanced technological options are available to simulate disease spread and to calculates options). The real challenge is to communicate this in a comprehensive way that everybody understands what to do according to each individual level of health literacy (what everybody is able to understand from healthcare). Some information comes from reliable sources, but there is no way to determine if the information is understood by patients to make the right decision. The digital information society needs structure, transparency and control of information which works in both directions in times of a crisis.  (see also the questions about trust below)

• How do I know if others are infected?, ill?, cured?, protected? at risk or not?

Official statistics are available to everybody. Knowing where to find reliable information is also important to know the situation of my neighborhood. Statistics don’t help to make the right individual decisions. The virus spreads locally and hence the local risk needs to be assessed. To identify infected and ill people quickly to secure others is vital for the safety of a whole population. Common analogue mechanisms to identify all persons that are at risk of the disease in the radius of an infected person are way too slow to allow precise and quick decisions. This leads to the necessary centrally imposed restrictions which are still no guarantee to protect the individual. The only thing that really helps is a precise tracking of personal contacts. This immediately triggers lots of data privacy concerns which are reasonable and correct. In times of a crisis of these dimensions individual rights will be reduced anyway in one way or the other. They should be administered in the most effective way possible. This calls for a clear and transparent risk model which doesn’t exist yet. The risk model has to weigh the right of the individual to be protected against the information need of the population/neighborhood to also protect themselves. Lots of options are available to make this work. In order to support local data sharing everybody would need the possibility e.g. to give consent to this. Even if not acceptable for some persons, examples from the ePatient context clearly show: privacy kills and openness saves life in some situations. If people are open to give feedback about their contacts and risk profiles this also helps to refine risk assessments and prognostic values on a global scale. Additionally, local information sharing leverages the possibility to organize support locally. The reorganization of healthcare services in favor of the most critical patients and the quarantine requirements in crisis blocks healthcare services away from the patient needs that would be available to them under normal conditions. Local information sharing bears the possibility to build local alternatives.

• How do I know which information I can trust?

There is no official single source of information and trust. Even if official sources are well known and trusted the modern information economy is vulnerable. Sources and information should be certified and approved in a transparent way that makes it easy to identify trustworthy sources and information. As information changes also the information need changes. Together with the information also process of reassessing the information need of patients should be documented. Examples range from updating FAQs to supporting digital adaptive dialogs with patients. Alternative, untrusted sources would have less possibility to target any additional information need.  

• How can I access healthcare services?

To know where my next healthcare facility is, is usually not a problem in a modern society with a functioning healthcare system. But still there are many unmet needs. In the COVID-19 situation one of the essential problems is that healthcare services become exhausted and personal contact carries a risk. Hence patients should have the possibility to access healthcare services differently. The separation of physical healthcare services from healthcare information services is a necessary distinction. Understandable information carries a huge value for each individual patient. It is essential to make sure information is understood by patients (see above). Information also flows easily both ways using remote connections. No physical contact necessary. Technically many different ways of accessing information are possible, reading documents, messages, becoming reminders or using direct calls with video support or not.  

• How do I know what I must, must not, can or can’t do to help myself or to help others?

Every local government makes sure to enforce local restrictions and give guidance at this time. Since there are official protocols and regulations in place to assure this, all this happens according to official procedures. However, all these measures are rather coarsely grained since they address the need of a system and assures right and order and safety on a system, population level. This centralized architecture is absolutely necessary and out of question. But still there is a need to optimize and manage local actions in a decentralized manner. Transparency and local management of resources for health, food supply and information prevents panics and leverages local support. Open and transparent communication and information that flows back and forth between patients and health and governmental functions must be ensured. I trust this also happens already within the communication of the responsible persons. Adding value to support local actions for prevention or management and support for the workforce, childcare, public transport needs a local information management beyond purely health related questions to manage risks. There are many recent examples available how information systems support local resource management for housing, transport and care that are even successful businesses. To copy the same mechanisms in times of a crisis can achieve great value for patients and populations if there is a governance and transparency of these possibilities.

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A Patient Centered Infrastructure – Part 4 – Information Retrieval

December 14th, 2019

In the preceding posts of this series we learned about the Patient Centered Infrastructure and all its constituents that ensure a seamless patient journey which always supports a precise picture of the individual health situation, collects all information about possible outcomes and helps to perform the necessary tasks in order to reach the personal health goal whether it is a cure, a remission or just an improvement in daily life.

We learned that profile information should be collected with the knowledge that it represents attached to it and that it should be versioned as knowledge is constantly changing in order to keep track of the consequences of change.

The next piece of conceptual model of the Patient Centered Process is information retrieval. Information retrieval uses the information backed up in the Patient Centered Infrastructure whether it is collected in profiles or provided with medical service or by educational means. 

What is information in this context and what is retrieval?

Informational retrieval is a discipline that combines methods and results of computer science, information theory and other sciences to provide the theoretical background for searching and finding content. You can read more of it here: https://en.wikipedia.org/wiki/Information_retrieval

Information retrieval for the Patient Centered Infrastructure means to give patients access to information and to provide the ability to assess the quality of this information according to the personal health situation, the individual level of health literacy and how this information can be used in other steps of the Patient Centered Process. This is not trivial at all.



In order to retrieve information, you first need an interface that supports retrieval actions. A very common understanding of retrieval supports search options on a repository like for example a database. First important thing is to understand how to issue the search and the search criteria. Is it a keyword or a combination of some? Is it some other information structure like an image or la results? Or is it a complete document or phrases written or spoken in natural languages? Or is it something completely different? Well, I would say it’s all of them. Impossible, you’d say. Well, is it?

At this point it is not necessary to make any real world concessions to what is possible or not. We are just collecting requirements. We didn’t make concessions to describe the profile step in the previous post, we won’t do it here and we certainly won’t do it in upcoming posts. We are just collecting problems and requirements. Solutions comes next, if ever …

When I started thinking about Patient Centered Concepts and blogging about it on http://patient-centered-it.com/ healthcare was moving along well established paths. It is still the case but today you feel that lots of money flows into a change towards patient centeredness, in fact the whole industry tries to understand what it means and the value it creates.  What I am trying to say is that given the current technological possibilities or even concrete products we don’t need to limit our view because future healthcare will need a couple of inventions that remain to be seen.

Roughly speaking information retrieval in the Patient Centered Infrastructure does everything in order to give patients access to information in a meaningful way.

This doesn’t exclusively mean that the result of this retrieval is something patients must read. It could be retrieval as part of a workflow step, information that is required to do a dialogue or just some information that configures a personalized device. In fact information becomes a first order artifact in medical procedures and becomes as important as other components in the process including therapeutic agents. 

But how does this work? What is needed conceptually and where does this lead us? 

Let’s just start simple, such that possibly everyone may follow. Using search engines like Google is an everyday task. Whatever you are looking for you will get some useful hints within seconds. The user interface is so simple and smart at the same time that virtually everyone who can input information will get some relevant results. In case of a search engine you type in something like keywords, phrases or an entire sentence which the search engine then maps somehow to the relevant results. This example is only simple because everyone is used to it. The technology behind it is far from simple. But let’s not bother about how this is implemented but rather how it is modeled. The only important fact here is that Input and output is related to the knowledge of the user. The input is usually much more related to the user’s knowledge than the output because the input usually is coming from the user. Let’s ignore the cases when it doesn’t for a while. In case of the search engine the input usually uses a textual representation, mostly human language, and the output also is a collection of texts or links to texts that are related to the input. Without digging too deep into information science, the most relevant concepts of this retrieval process are the input or the query and the result in its most abstract sense. Contributing components are also the knowledge or literacy of the user and the model, in its most abstract sense, of the search engine. However the most important relationship remains, like the input is related to the knowledge or literacy of the user, the relevance of the output is it too. A relevant output should always have some meaning for the requester, if it has not it is just useless, even if it is correct. 

Now let’s move away from this simple, known example and bypass all other retrieval technologies and models like databases of all kinds and step directly into the Patient Centered Infrastructure as defined by this series of posts. 

What does it mean to query information from a Patient Centered Infrastructure? How is information represented, processed and how results are represented? Well, there’s not a single and simple answer to that. Stepping back to the posts about Profiles in a Patient Centered Infrastructure this means at least that we can use Profile as an important source of information. Additionally of course all data sources that are linked with the Profile may be queried too.

But we need to look at the use cases for information retrieval first before we can understand what is needed and more important how it is needed. Information retrieval from a Patient Centered Infrastructure will always be embedded in a higher level use case like engaging with a medical service, communicating with other stakeholders or making decisions about possible process steps. The use case defines not only the domain and the vocabulary but also the process and interactions. To put it in a simple way without the need for formal definitions, which are of course necessary for a sound scientific model, information retrieval from a Patient Centered Infrastructure means to access just the right amount of information as required by the current use case or interaction with the infrastructure. This could be pretty simple like just asking for a definition of a word or it or it could be amazingly difficult like calculating the recommendation of the next best step like adjusting a medication dosage or selecting the best choice for an interventional procedure in the given situation, or just the next best available person to talk to.

The Patient Centered Infrastructure itself has no predefined knowledge about how to retrieve information and less even what it means (see upcoming post about knowledge management), it only provides the infrastructure to connect use case provider and consumer together in a pretty dynamic fashion. 

Before we take a look on what is needed to realize this pretty big picture let’s have a look on the requirements. 

Patients should be viewed as active stakeholders in consumer health information technology development (http://www.jmir.org/2018/4/e128/) and this is true for all stakeholders of the Patient Centered Infrastructure. This requires a very dynamic, declarative or data-driven approach about how to define requirements, interactions or processes. Trust in health information and belief in the effectiveness of information security safeguards increases perceptions of patient care quality (http://www.jmir.org/2018/4/e107/). Safety and trust is a first order requirement for the Patient Centered Infrastructure in order to make it work. It has to be very transparent and concise about safety levels and even the comparison with perceived safety. WhatsApp, SMS, and email are effective and widely used ICTs that can promote communication between cancer patients and physicians (http://www.jmir.org/2018/2/e50/). The adoption and integration of everyday ICTs is a big factor for popularity and ease of use of the Patient Centered Infrastructure. Health care professionals should assist patients’ medical decision making by initiating as much dialogue with patients as possible, providing credible and convincing health information to patients, and guiding patients where to look for accurate, comprehensive, and understandable online health information (http://www.jmir.org/2018/2/e47/). Privacy, security and trust in the Patient Centered Infrastructure are still high priority first order requirements but become relative to the goals of the patient. As long as patients execute their rights on data privacy they are in charge to govern all data related processes. Part of the Patient Centered Infrastructure would be a possibility for patients to become more than only data subjects. GDPR and other regulation assume that data controllers are distinct entities that support patients rights. For a Patient Centered Infrastructure it makes sense to define data owners that also own part of the Patient Centered Infrastructure regarding the use of their own data. Even if that sounds a little constructed it makes sense if you think about the consequences of data policies supporting the wrong goals. There is enough evidence even if anecdotal that privacy kills and openness saves life (in some situations) (https://www.jmir.org/2019/11/e17045/). Information retrieval and access become even political dimensions in that sense. My personal guiding principle deduced from that is: Information cures (see upcoming post). This is why you won’t want patients not having this cure. Patients as information provider are then curing actors, health providers but only in a context that supports the right level of access and literacy: the Patient Centered Infrastructure

Education (see upcoming post) and communication reflecting the individual level of health literacy also requires a very flexible mechanism to query information and calculate results according to the current use case. Internet health information seeking can improve the patient-physician relationship depending on whether the patient discusses the information with the physician and on their prior relationship (http://www.jmir.org/2017/1/e9/). 

Lets collect some requirements as user stories regarding information retrieval from the Patient Centered Infrastructure (not exhaustive at all):

• As a patient I want to be an active stakeholder in consumer health information technology development (again all stakeholders are required in that role) for the Patient Centered Infrastructure
• As a patient I want constant participation in definition of requirements, interactions or processes for information retrieval and quality from the Patient Centered Infrastructure
• As a patient I want to have and control trust in health information and belief in the effectiveness of information security for information management and retrieval in the Patient Centered Infrastructure
• As a patient I want control all security levels of the data and information that I own
• As a patient I want to understand the tools and methods I use for information retrieval from the Patient Centered Infrastructure
• As a patient I want to select the tools and methods I use for information retrieval from the Patient Centered Infrastructure
• As a patient I want to retrieve information that fits perfectly into my personal health pathway/process without the need for me to specify the informational need explicitly. (I just own my information and the process; the information need is determined implicitly but I can adjust it)
• As a patient I want to issue queries and retrieve information according to my individual level of health literacy and my learning curve
• As a patient I want to be an information provider in the Patient Centered Infrastructure with a transparent contribution for other stakeholders to use it for the health and wealth of others



How to do all that? 

According to the conception of this post I could have asked question and specified requirement only in relation to things that I personally understand. Which kind of means or gives at least hope that technology exists that could support all requirements and use cases. I personally do believe that we are not solving a technological problem here. Everything that is required could be leveraged by human interaction alone. Technology just makes it faster and at some points more reliable. Retrieval from a Patient Centered Infrastructure requires a cultural change to make accessible what already exists. 

And change is underway, accompanied by technology or driven by it. If it is a way to help patients to receive the right educational material about diabetes (https://www.jmir.org/2017/10/e342/) or a method to support information retrieval from web scale sources to evidence based practices (https://www.jmir.org/2019/8/e12621/) (even if targeted mainly at health care practitioners).

All this shows that technology only helps to ask the right questions but is not the principal reason for change. 

Stay tuned for upcoming posts about knowledge management and education

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A Patient Centered Infrastructure – Part 3 – Profile

December 27th, 2017

In part one we learned about the requirements and the need to build a Patient Centered Infrastructure. In part two we learned about the Patient Centered Process. This article explains the need for profile information in the Patient Centered Process.

Profile Information as explained in the previous article references all the necessary actions to collect health data and access them again at any stage of a healthcare process or any step inside the Patient Centered Process. This already says a lot. And it contains a clear statement why a Patient Centered Profile is something very different from a traditional EHR Profile. EPR or EHR implementations are traditionally trying to collect healthcare data in a way that they act as data sinks for healthcare processes. Standardization efforts have tried to assure interoperability of these data oriented tools.(EHR Profiles)



The success was very limited. One fundamental reason for this is that healthcare itself is not a data based culture. Healthcare traditionally was and hopefully always will be a value oriented culture with its undisputable objectives providing and maintaining health of people and populations

Data collection to support these goals was done ever since to document experience. With a modern and more scientific medicine data became more important and the primary tool of proof for effects and success. However there is always this always this fundamental bias involved in any attempt to collects data from one patient, in one situation according to the question that needs to be answered. The dimensions of who, why, what, when, where and how are responsible for the establishment of any data silo, that is so difficult to break down again.

For data to represent valuable information it must reference all the knowledge of all these dimensions together with their concrete values along these dimensions. It is very often not understood how a data value is biased by the method of generating it or the time or the question behind it. Data quality almost always does not transcend one or more dimensions. This is a fundamental problem for any value based healthcare system that relies on data collection.

I don’t want to describe the problem any deeper than that. In fact is makes more sense to thinks about possible solutions. Well, the designated solution of this series is called the Patient Centered Infrastructure. Together with the Patient Centered Process it takes care of (re)assigning value to profile information. How this can be done will be topic of upcoming article. Here we just focus on the necessary aspects of profile information.

The Patient Centered Profile makes sure that all values are conserved together with the knowledge behind its acquisition. In fact that is not very simple. The expanded (and probably exaggerated and unnecessary) version of this claim is that the necessary knowledge to document a lab value contains also the science that led to the discovery of the method of acquisition itself and the concrete instance and method of the measurement. But more importantly the knowledge that leads to the understanding of the lab value needs to be referenced. That includes also the patient’s knowledge according to the individual level of health literacy. This is a powerful statement. In fact the central claim is in order to break down siloes it is necessary to (re)assign knowledge to profile information in a very agile and dynamic way. How this is done will be documented in upcoming articles. We will now have a look at how profile information itself should be managed.

The Patient Centered Profile contains data collections accumulated in the Patient Centered Process and supports all the necessary dimensions to interpret the data in a meaningful way rendering information to understand the pathway of the patient. Dimensions are supported as views or filters on the data. Semantic filtering can be used to document particular diagnostics or questions. The most necessary dimensions are who, why, what, when, where and how data was acquired and of course the knowledge necessary for understanding, but of course now restricted to these. Dimensions can be added dynamically. It is very important to attach the necessary knowledge explicitly. There is no such thing as implicit knowledge which usually is the main reasons to build unbreakable data siloes. Doctors and patients should be able to look at the Patient Centered Profile using different levels of knowledge but still referencing the same data in a way that a Patient Centered Dialogue is supported. An example for using different relevant knowledge or at least emphasizing different views would be a red blood cell count which for the doctor is related to the condition of anemia and for the patient it is related more to the clinical symptoms like fatigue and of course the treatment depending on the type of anemia. Even if both use different working knowledge concepts attached to the same data, they are enabled to cooperate on that condition.

This means that a semantic patient profile or patient record always has the working knowledge attached to it that helps to interpret the data according to the health situation or condition. This is very important for rare conditions where you have to collect common conditions which usually lead to common interpretations in a different way usually hidden form the view. An example for this would be Fabry’s disease where many symptoms are caused by a rare genetic defect and not by very common diseases. In fact a semantic profile supporting different views on the data is the key to effective translational medicine.

This article only motivates the fundamental data structure for supporting semantic profiles within the Patient Centered Process. Upcoming posts will document the necessary processes and intelligence that manipulates semantic profiles in a meaningful way. A Patient Centered Profile supports different views on the data as already mentioned. A Patient Centered Profile is constantly updated as new data or knowledge flows in. These different versions along the time dimension can be compared and manipulated in a transactional way to support differential analysis.

Conclusion

The patient Centered Profile collects medical data from unlimited sources and stores them together with the knowledge concepts attached that are needed for interpretation according to a certain question or condition. It supports various views and different outcomes along multiple dimensions and can be updated and manipulated to support different views on the same situations. The knowledge management and mining processes will be documented in upcoming posts

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A Patient Centered Infrastructure – Part 2 – The Patient Centered Process

September 24th, 2017

In part one we learned about the requirements and the need to build a Patient Centered Infrastructure. The central purpose of this infrastructure is to empower patients to participate in healthcare processes. This participation is based on the individual level of health literacy of each patient. Increasing health literacy and offering participation are the main building blocks of the Patient Centered Infrastructure. Information becomes a central resource for the outcome of patient healthcare pathways.

In this part we will have a look on the necessary actions that need to be taken in order to participate and to understand and reflect participation. Traditionally healthcare supports a very common picture of health and illness and what is necessary to be cured and stay healthy (https://en.wikipedia.org/wiki/Traditional_medicine).

Within this commonality resides good and evil side by side. Medical science ever since tried to understand the common things. There’s a very catchy statement that describes the nature of medical wisdom that supports medial practice: ‘common things are common’. Meaning that what you know about many patients helps you to understand the situation of an individual patient. Symptoms, therapies and outcomes are the result of statistical observations and analysis in their majority and that’s OK. However, often enough it is not OK. With the same relentless statistical precision, we find situations that need uncommon, rare and need individual reasoning (https://en.wikipedia.org/wiki/Rare_disease).

As a consequence medical science is on a way to uncover a deeper understanding of the individuality and variability of health, illness and the consideration of any personal situation and this changes the face of medical science (https://www.statnews.com/2017/08/02/randomized-controlled-trials-medical-research/).

But even if we focus on common things and subscribe to the general notion that all patients can be treated and healed according to the prevailing medical knowledge that is based on the observation of populations, groups and communities with a count greater than one, every process with patients is based on individual interactions or at least the individual knowledge of each patient or his health literacy. This is why healthcare delivery was an individual process ever since. And even more than that since medical science builds much more knowledge and wisdom on the parts of a patient than the patient as a whole, there’s enough probability that any scientific understanding of health and illness is still wrong enough given any individual situation.

In this blog post we try to imagine patients as active participants of a process and individual caretakers of themselves. This is an important step. We try to model the patient behavior from the patient perspective and not from the scientific basis. We try to understand patients like consumers of their health demanding information, communication, education, safety and trust and of course treatment. The patient acts as an individual according to or her individual knowledge and beliefs. Apart from what we know about biology and medicine this is a crucial ingredient to care of people and keep them healthy. You can’t treat patients only according to their biology or what is known from that. That would be like flying an airplane just relying on physics. It works but it doesn’t guarantee a happy landing. Customer demand and satisfaction are among the most important influences on commercial aviation and the education and behavior of the airline personnel. Imagine yourself as a passenger always in a state of emergency. This wouldn’t be a desirable perspective. So what is needed for healthcare is what is taken for granted in other sectors, even if this is just a very rough comparison.

But the commercial perspective of healthcare is just one aspect to support a Patient Centered Process. It is an important one but there’s much more to it than meets the eye yet. We begin here to imagine the Patient Centered Process as an important basis to healthcare delivery and also as a tool to redefine the understanding of health and illness. There is a probability that it may host the missing perspectives on individual patients which are necessary to understand the individual nature of disease more completely than before. It connects all participants of healthcare processes into one uniform process model. The steps of the process may be performed by actions, services or other processes. This we will learn walking the process step by step. This blog post gives a summary of all steps; the follow ups explain each step in detail.

The Patient Centered Process

Since the Patient Centered Process is circular there is no start or end. For each patient, the process starts with a different step. The process runs forever in the lifetime of an individual patient and it is important to consider that is already running for each and every one of us just that this has been happening virtually without any technological support for the process itself. And even if there is technological support for some process steps already happening like for example access to an electronic medical record or a patient forum these technological steps are not supporting the process as a whole as long as they are not integrated. But with integration it should converge into a single process where each step represents also everything that happened before. Once the Patient Centered Infrastructure is completely integrated for a patient there is only single process running for each patient and the reason it is running is not a disease or illness condition but the patient himself and his or her experience. We have to be aware that every day, every moment we make choices or learn things that directly or indirectly influences health outcomes. If it is the way we compose our diet or the travel destination we choose or even simpler the amount of sleep we get. Everything counts; everything influences the path we take in relation to a healthy lifestyle.

Recent developments in precision medicine highlight the genetic diversity of humans in relation to the biological foundations of individual disease and health. This opens new possibilities to describe the genetic situation of a patient and to analyze this in contrast to the phenotypical presentation and the clinical findings (https://en.wikipedia.org/wiki/Precision_medicine).

The Patient Centered Process supports a way not only to manage this information between experts and patients but also to add new ways to do research in a collaborative way.

The Patient Centered Infrastructure together with the Patient Centered Process empowers patients because it provides access to information, people and services in a structured way as it channels all actions taken back into the process. The infrastructure provides the technological basis to support education that empowers patients to improve health literacy. This aims at breaking down the silos that medicine and healthcare is suffering from while still ensuring the necessary amount of privacy and trust. The necessary level of protection is also a highly individual aspect. Every patient has an individual understanding of what is to be protected and what not. The Patient Centered Infrastructure provides the necessary tools and fine grained control of individual security. But what does individual behavior mean? And how can it be supported? Even if this gets very complicated in the end

a very simple example may document this. Many conventional therapies only fail because patients don’t understand the rules or just forget about to take the pills (https://news.aetna.com/2016/08/causes-half-chronic-disease-treatment-failures/).

Traditional medicine is not very eager in explaining this or trying to do something about it. Drug delivery is models break it down to its biological or mechanical characteristics. But patients need to take it first before any biological effects can happen. In general behavior contributes a great deal to what health is or means for a single patient or person. In fact it represents the state of health. In fact health related behavior is so difficult to assess and measure for what it means for health outcomes but intuitively there seems to be a huge impact. Medicine and medical science has achieved great results in order to save or improve the life of everyone but there is still no standard way to control health related behavior. How could that be? It can only be the patient itself that effectively controls it. This is why any attempt to deal with the connection between health related behavior and outcome, has to be patient centered. So if we build a Patient Centered Infrastructure that guarantees compliance and adherence in a way that drug effects are within the calculated ranges, for example we need to put the patient in control and we already do something big. But we want more. The traditional way drugs are designed and tested and applied is not patient centered at all. Imagine a situation where the whole Patient Centered Infrastructure is able to deliver the same outcome drug therapy does or even better, the information contained in the Patient Centered Infrastructure is able to simulate the individual path of patients. This is what we want. But this is a huge endeavor. However I believe this is possible. With the Patient Centered Infrastructure as a tool the picture of health and healthcare becomes more and more complete because it takes all the information into account that was left aside so far but its importance can’t be underestimated. But let’s keep it simple for now. We actually are learning, we don’ know yet exactly how everything works out together. But we can propose the ingredients.

And this is how it works. The steps of the Patient Centered Process that contribute to the outcome are the following:

• Profile. Profile references all the necessary actions to collect health data and access them again at any stage of a healthcare process or any step inside the Patient Centered Process.
• Information retrieval. This step is fundamentally different from the Profile step because it contains the possibility to identify more information than just directly the data that is managed by the profile step. The intelligence that is needed to do this could be contributed by algorithms or human beings or anything else with the ability to do this. Information retrieval is a very individual process and not only a technical one. It connects the profile information, any other relevant sources and the individual knowledge or health literacy of the patient accessing the information
• Knowledge Management. Collects, formalizes and manages the knowledge needed to associate data, information, behavior and literacy. Knowledge is a first order artifact inside the Patient Centered Infrastructure and not only something that is encapsulated inside science or human brains. It is generated on the fly but persists after the fly. It is important that every patient knows what he or she knows. Knowledge management helps to organize this important resource.
• Education. All the actions necessary to produce reliable and intelligent behavior, knowledge, literacy and empowerment. This means not only for one patient but for the whole system. Educational support should be able to improve outcomes directly. It can thus be considered as a kind of therapy in the broader sense. But in many cases this is not enough. Since knowledge is a primary resource in the Patient Centered Process the need for education can be assessed and the educational action can be planned on an individual level
• Medical Services. All actions that are related to health interventions that are not covered by the other steps. Usually performed by health professionals but not necessarily. Even more important the medical services are subscribed and ordered by the patient directly and not by any party acting on his or her behalf. Within the process the need for every medical service becomes very transparent and its effect completely understood. Examples are second opinion, lab orders, consultancy, imaging services or even genetic sequencing.

This is a very coarse process model. It is possible that it will be extended according to process innovation. But for now that’s it. Behind the steps there is a quality framework that ensures the quality and outcome of the whole process. This and details of each step we be describes in the follow up posts.

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A Patient Centered Infrastructure – Part 1 – Introduction

August 12th, 2015

Healthcare delivery is in permanent crisis. Worldwide. At least the leading economies of the world are facing a problem that healthcare delivery based on state of the art medicine is not possible in a cost efficient way. At the same time the cost structure is not transparent to the patients or anyone and the main value of healthcare delivery: health is not seen as a common goal which needs permanent attention.

Healthcare without Patients


Traditionally healthcare delivery tries to hide the complexity of medicine away from patients. Even if the patient as a person is involved in diagnostic or therapeutic procedures, he or she inhabits a rather passive role. A patient doesn’t need to know exactly what is going in order to cure him. At least this is a very common practice among healthcare professionals. Not only that this view ignores the significance of a patient in healthcare delivery, this is completely wrong and dangerous too. The participation of a patient in healthcare delivery is restricted often enough only to patient interviews, and medical procedures to some extent as far as the contribution is really needed, as in encounters with a psychological background or just physical presence to get blood samples etc.

Sometimes a patient appears to physicians just as a collection of data. There is a funny saying used among radiologists which tells the whole story:

‘Do the impossible: go and see the patient’

The consequence of such a situation is that healthcare delivery in most situations renders to be less than optimal. The patient is most underrated resource in healthcare delivery. This is tragic because the motivation and participation has a great influence on the outcome of any disease or health related situation.

Defining the patient centered infrastructure


Putting the patient in the center sounds like a good plan. But where exactly is the center? Is it where the patient already is or is it somewhere else? This whole blog is about finding answers to this question. At least about what information technology should contribute to find an answer. To understand the issue of centeredness it seems straightforward to claim a couple of services which may contribute to the well being of a patient, to provide patients with information, communication, education and trust. This is what I call a patient centered infrastructure. Within a couple of posts I will outline the notion of an infrastructure which does exactly this.

This infrastructure is about technology, mostly software, but technology itself is just the road, maybe the car, the driver is the patient. And then there is people needed to teach driving. We start with a simple question. How do you know that you are sick? It is mainly because you don’t feel well. In fact this is your condition and usually you decide that you are not OK. At this point it doesn’t matter if you are sick or not according to medical teaching or diagnostics. The decision itself is enough to justify the following. For the sake of simplicity I am ignoring the cases where someone else tells you that you are sick and you don’t feel sick. That is too complicated right now.

So what you are doing about this? Well the answer depends on your level of health literacy; this is how much you know about the health condition you are in. If you are a doctor you may understand a lot if not you need someone to tell you. But exactly what? Do you want to know everything or just what to do to be well again? This is the next decision you make and it influences your path to become well again fundamentally, much more than the first one. If it is a conscious decision or no is also influenced by your level of health literacy. In fact health literacy is such a central concept to the discussion of the Patient Centered Infrastructure that we need to define it

the degree to which individuals can obtain, process, and understand the basic health information and services they need to make appropriate health decisions


The level of health literacy is diverse and there is no widely accepted process or solution to improve this situation. It is an implicit ingredient of the healthcare delivery process. Where patient education is performed it is not a central component of healthcare delivery but mainly an optional procedure.

Healthcare progress is related to the availability of new diagnostic and therapeutic procedures, but also to the development of new delivery methods. Evidence Based Medicine is such a progress that collects the availability of tools and methods of clinical practice into a framework of decision support. The availability of information technology, the internet and tools, services and practices that uses them gives us another possibility to achieve progress. This cannot be reduced to technology alone because the combination of the above has an impact on society and the way we live. But all these advance can’t just be restricted to the provider perspective.

Health literacy is an individual condition and every patient may have different information needs. This is another perspective of the mismatch between current healthcare models and patients needs. Medicine traditionally tries to define common answers to common problem which works for the majority of patients but nor for all. The tendency to integrate more individual traits into healthcare is a way to achieve better outcomes for individuals. Defining and understanding the individual better, not only in terms of informational needs but also physiologically, psychologically and genetically is a very powerful tendency in current medical research (Personal medicine, precision medicine). All this sums up to the tendency of a more value oriented medicine where each patient is able to define the outcome on an individual basis.

So how can patients interact and what exactly is needed? Many patients try to improve their health literacy and skills on their own using Google and the information available on the internet. This has some benefits but causes sometimes the opposite result. Health literacy is reduced because the information available does not fit into the individual situation. Doctors treating these wrongly informed patients spend time and resources to get them back on track. Or patients just make the wrong decision based on this information. For the Patient Centered Infrastructure this is the most important and undisputable claim:

• As patient I want to find information that is related to my health situation
  

Suppose that this works and the Patient Centered Infrastructure is able to deliver this information. What am I going to do with it? First thing (but not restricted to) is that you want to share this with somebody:

• As patient I want to share information that is related to my health situation
  

Could be my doctor, other patients or family members. Could be everything or just a part of it. Whatever makes sense for me I will define it.

All this implies that the Patient Centered Infrastructure knows enough about me that it is able to determine all necessary relationships for my health situation. It knows my data, my level of health literacy, my goals. It knows me. Sounds like science fiction? Well, it is definitely science but not fiction. We will continue with more aspects in upcoming posts.

The Patient Centered Infrastructure is a model that supports the Patient Centered Process and a service infrastructure that serves the informational needs of patients. But more than that it helps making information a valuable resource for the outcome of patients. We will continue to document the features and aspects of that model in upcoming posts.

A paper of the Patient Centered Infrastructure has been published for IMECS2013

http://www.iaeng.org/publication/IMECS2013/IMECS2013_pp200-202.pdf

[Certificate of Merit for The 2013 IAENG International Conference on Computer Science]

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Transforming Patient Experience: Health Web Science Meets Medicine 2.0

March 22nd, 2014

Very motivating article about the changes to future healthcare systems and how these are related to contributing sciences connected to ICT. My personal analysis would be that ICT powered methods like Patient Centered IT leverages new ways healthcare is defined. Intervention becomes Outcome. However the methods to deliver this new quality are only slowly evolving. There should be no fear about local emerging ecosystems organized as ‘networks which may challenge conventional delivery models’ as cited in the article because the conditions that dominate healthcare delivery may have a very locally and individually  restricted scope.  Upcoming investigations will have to identify the variables that describes each scoped ecosystem spatially, logically, timely and organizationally. Very interesting

http://www.medicine20.com/2014/1/e2/

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Infographic about health literacy

November 20th, 2013

This a very interesting post about some facts of the drivers of changing healthcare. The impact of information and communication is measurable. However the measurements are often related to coarse grained concepts like healthcare costs. Information in the role of a therapeutical intervention or in the role of a framework for a changing society needs other measures. Value oriented measurements are not available short term. The development of apropriate methods to measure outcome in a long termin is just not availabale. However it it seems intuitive to see the relationship between the documented difficulty of understanding health related information and the difficulty to follow medical advice. We tend to build causal relationships between documented facts.This may not be the best option. But there is a lot more research needed to identify relationships between the facts that may support a positive influence on health literacy and outcome. Enjoy the graphics.

http://www.healthcarecommunication.com/Main/Articles/b289910b-db75-4704-82c6-badf32f73c0d.aspx

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Social Media in Healthcare: Who Cares in Healthcare?

May 5th, 2013

A systematic review of social media for healthcare documents some very important influences and aspects of these platforms when used for health interactions. However social media is only one necessary development that contributes to let patients particpate in healthcare delivery. The whole development is quite new and people are adapting and adopting so that real experience is still small, but taken just the benefits brings to the front what always has been happening and was always part of healthcare: the social character and interaction between people.

Please read

http://www.jmir.org/2013/4/e85/

to get a good overview.

The limitations of social media

Social media tools remain informal, unregulated mechanisms for information collection, sharing, and promotion, so the information is of varying quality and consistency. Similar issues exist with traditional Internet sites, but these issues are being heightened by the interactive nature of social media, which allows lay-users to upload information regardless of quality. Reliability may be monitored by responsible bodies using automated processes, employed to signal when content has been significantly edited, and progress is being made in automated quality detection.

are mainly attributable to the immature nature of the platforms in general. Social Media is just too general pupose to be used for healthcare purposes. There is a need for reliablity, meaning and accuracy. Personalization of content can be achieved but what is missing is the ability to handle the intense nature of medical knowledge. My approach is the complete Patient Centered Infrastructure which i will document in this blog

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