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
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.
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
