Patient Centered IT

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.