August 2007

User-Driven Healthcare: A Conceptual Model

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Learning, be it e-Learning or otherwise, is a cyclical process of reflective observation based on day to day concrete experiences, followed by abstract conceptualization and active experimentation at either individual or group levels.The present day evidence base in healthcare drives on active experimentation at a collective level and accumulates average patient data that may be difficult to correlate at an individual patient or health professional level. Web-based sharing of individual patient and health professional experiences through PC and mobile interfaces would make for better e-Learning in healthcare and could be easily incorporated into physician CME accreditation programmes.

User-driven healthcare is improved healthcare achieved with concerted collaborative learning between multiple users and stakeholders, primarily patients, health professionals and other actors in the care giving collaborative network across a web interface. User-driven healthcare may not be anything new as patients and health professionals, as health system users, have always been instrumental in driving the healthcare system. With the advent of the Internet however the term user driven has taken up a new meaning, as user here would denote patients and health professionals collaborating on the net. User-driven healthcare also needs to be differentiated from the presently more ubiquitous consumer-driven healthcare, which is essentially a strategy for users/consumers to decide how they may pay for their own healthcare through multiple stakeholders like employers who provide the money, and insurance companies who receive the premiums.

Present learning strategies in healthcare are mostly dependent on top-down structured content and non-structured bottom-up patient physician experiences are paid less importance. However, regular recording of day to day individual non-structured experiential data between patients and physicians may be a valuable adjunct to structured average patient data that presently exists in our information bases to promote patient-physician e-Learning in healthcare.

Learning, be it e-Learning or otherwise, is a cyclical process of reflective observation based on day to day concrete experiences, followed by abstract conceptualization and active experimentation at either individual or group levels (see figure 1). The present day evidence base in healthcare drives on active experimentation at a collective level and accumulates average patient data that may be difficult to correlate at an individual patient or health professional level. Web-based sharing of individual patient and health professional experiences through PC and mobile interfaces would make for better e-Learning in healthcare and could be easily incorporated into physician CME accreditation programmes. Collective wisdom in healthcare may be generated by diverse information needs in different individuals through a decentralized web -based adaptive system.

Medicine is a collaborative effort in problem solving between individual patients, health professionals and other bystanders (directly or indirectly related to the patient and health professionals, while patients' relatives and physicians' institutions provide the necessary support to the two primary collaborators). In the medieval past, medicine was a similar problem solving effort between patients and health professionals, but with time and globalization there have been major changes.

Each and every human has the capacity and likelihood of performing both roles of caregiver and care seeker (patient) in their lifetimes. From a localized expert physician opinion-driven approach in clinical decision-making (as a first step towards medical problem solving) the collaborative process has evolved to a global evidence-based approach that uses generalized information for the benefit of the individual patient.

As this information is to a substantial extent available on the Internet, patients and health professionals have rapidly learnt to use these Internet services to solve their clinical problems. All these users and their information needs, drive present day healthcare to a considerable extent.

Often in day-to-day practice, both individual patients and health professionals are in situations where the information available is limited and difficult to apply to a given patient. A gap between what is proved to be effective for selected groups of patients versus the infinitely complex clinical decisions required for individual patients has been recently recognized and termed as the inferential gap. The breadth of the inferential gap varies according to available knowledge, its relevance to clinical decisions, access to the knowledge (that is, what the physician actually knows at the time of a clinical decision), the variable ways in which knowledge is interpreted and translated into a decision, the patient's needs and preferences, and a host of other factors. Clinicians are required to fill in where their knowledge (or knowledge itself) falls short.

e-Learning in healthcare redefined

Average patient data, which occupies most of our present day information bases, is often unable to satisfy individual patient needs. In spite of the medical information base expanding unprecedentedly at present, we still do not have that quality of information to satisfy a complex clinical problem of an individual patient to an optimal extent.

They are often questions about both particular patients and different areas of medical knowledge, which may perplex medical practitioners. Here I will quote a BMJ Editor to elaborate on the complexity of the problem. Though this quote, is more than ten years old, it is very much relevant in todays so called fast changing medical age.

“In an octogenarian with anemia, angina, and a history of transient ischemic attacks, with a normal creatinine, iron, and mean corpuscular volume, who refuses a bone marrow exam, what diagnostic and therapeutic options are there?”

He presents in a single case, four different problems (including patient age) simply on clinical presentation alone, compounded by the fact that the patient doesn't want the kind of investigative and therapeutic options present day modern medicine has to offer.

Furthermore, the need for information is often much more than a question about medical knowledge. People are looking for guidance, psychological support, affirmation, commiseration, sympathy, judgement, and feedback. This 'information need' is poorly explored, and yet it may well be the most important need and the biggest stumbling block to a technical solution. Smith also mentions, “Most of the questions generated in consultations go unanswered.”

The moot question remains that how then do we account for the multidimensional information needs that every individual patient can generate? Can information technology offer an effective solution? There is no denying the fact that we need an information base that can seamlessly integrate information needs of all categories of certain individual medical learners, namely patients and medical students, who are also health professionals, with matching solutions offered by other individual medical learners; who have already gone through the particular experience the other group needs.

However, e-Learning environments can be creatively used to cater to the individual patient needs in a better way. Firstly, the access to life experience information of one patient that finds a match in another patient can itself act as a sort of narrative therapy for that patient. e-Learning can play a major role in facilitating this matching. Physicians should record e-Logs on their PDAs, preferably on a daily basis, which can facilitate to solve individual patient/health professional user needs in a more effective way. Most healthcare professionals/individual patients can generate a lot more variety of beneficial examples in shared e-Logging in healthcare through regularly maintaining their own daily process logs, for which one may have time if it is done on the job. The information needs generated from these may be identified by web-based user driven solutions. Ideally, after the physician enters the data into a PDA, it should be uploaded in the web portal of a given medical facility, which would in turn result in sharing and communicating of valuable patient data. This can eventually pave the way for a customized or a more interactive patient-centric care. All these together can offer a convenient local solution to improving hospital communication among in-house health professionals in a hospital, which is thankfully showing signs of evolving at present in many hospitals.

It should be recognized that medical students act as a vital force in e- Learning and improvement of patient care. This may sound contrary to popular opinion, but also happens to be true. The governments generally think that it spends a lot of money on undergraduate medical training, perhaps because these student doctors apparently do not serve while they learn. However, it is the medical student who has the time to listen in detail to their chosen individual patient (they do not have to see and are not responsible for all the ward patients unlike their overworked houseman/resident seniors). Medical students' e-Logs on their individual patients can be a vital source of detailed narrative data of individual patients, which their consultant might often enjoy reading and also benefit from, on a daily basis.

Individual patient learning and communicating from global experiences

In this article, we are proposing a global solution for all varieties of individual users. This solution can have wide ramifications in user-driven healthcare. For example, it can afford a diabetic patient in one part of the world to key in his concerns about his own foot ulcer and find a match with his symptoms for another diabetic patient languishing with similar symptoms in another part of the globe. The former can drop in a word of sympathy to the latter and perhaps (through exchange of e-notes) can learn better sugar control from each other. Perhaps another person in another part of the world could become aware of the importance of a DNR from his dying father with end stage disease. Perhaps another diabetic with mild foot ulcer could become aware of the need for better sugar control in his own situation, by reading our first diabetic's notes, and may remind his physician about his increasing sugar intake. We are not suggesting that the third diabetic's physician is not knowledgeable about the importance of controlling blood sugars in foot ulcers but perhaps it is sometimes human for physicians to make errors of omission (especially under pressure), and unfortunately it is perhaps human to even want to cover up our errors (covering up is incidentally another word for privacy).

We advocate more transparency among patients and physicians so that both parties can benefit from continual learning from each other. Privacy (or covering up) may be a direct hindrance in this element of transparency, a fact we should seriously rethink in our definitions of privacy. Having said that, it would still be important to maintain patient anonymity and here we propose a method of anonymous information sharing, where patient identity would remain secure.

Manner of usage of the proposed e-Health learning solution

A web-based solution to integrate healthcare e-Learning needs could lie in a simpler forum model already in use at present in various web2.0 sites. Regular experiential informational input may be posted on to the forum, along with a copy to the individual user's password protected web account that would function as an e-Portfolio if s/he were posting as a caregiver, and as a private personal health record if s/he is posting as a patient. The individual user could even do this through e-mail and every post made by mail could easily open a new post on to the forum.

However, this would still be confined to PC literate users and to bridge this digital divide, we, along with our collaborators in Intel Malaysia Innovation and Sunway College, are trying to develop a mobile SMS (short messaging system) portal for data entry into the web repository. An individual at his/her leisure or even while waiting in queue to meet his/her physician may SMS his/her thoughts, reflections and queries about his/her disease onto the forum, that could be responded to by anyone on the web.

All these information sharing could be optionally kept anonymous as user names could be made impersonal (again depending on user choice). SMSes to the web may display only the individual user's mobile numbers. The illness experience posts would automatically generate related posts, depending on the keyword-tags that are being used to represent their posts, and this would enable every user posting his/her individual experiences to go through similar relevant live experiences of other individuals. In this way, any individual user feeding input into the net can receive automatic feedback that can grow, as individual users for this web-based solution grow; as they keep feeding their own data regularly. Each and every individual is the author of his own destiny (as well as his own web log) that reflects his experiential life processes and decisions, which can in turn shape his future. The present proposal is an attempt to help make those decisions. It is a proposal to document valuable individual experiences of patients, physicians and medical students in a practicably feasible manner that has till date regularly gone undocumented and has been lost to the medical literature that would have actually benefited from it.

If only all our daily processes were documented along with the anecdotes generated from them, they may yet be a valuable form of evidence. It may not be an impossible dream in this electronic information age. Web-based sharing of individual patient and health professional experiences through PCs and mobile interfaces would make for better e-Learning in healthcare and could be easily incorporated into physician CME accreditation programmes. SERMO is one web-based US company which has already made considerable headway in this direction, using a similar forum model (see figure 2) that's at present only restricted to the US physicians.

James Surowiecki in his book, 'The wisdom of crowds,' mentions four key qualities that make for collective wisdom. It needs to be diverse, so that people are bringing different pieces of information to the table. It needs to be decentralized, so that no one at the top is dictating the crowd's answer. It needs a way of summarizing people's opinions into one collective verdict. And the people in the crowd need to be independent, so that they pay attention mostly to their own information, and not worrying about what everyone around them thinks.

How individual medical learners utilize their answered information needs would be the beginning of another process in continued bottom-up development in healthcare, positively complimenting the present day pedagogic top-down approach that dominates current medical learning. They can take a leaf from Surowiecki.

Acknowledgements:

The first author holds complete responsibility for the views expressed in the article, and also acknowledges the significant stimuli from various online discussion groups, particularly the Evidence Based health, Complexity in Primary Care, HIFA and Indian Association of Medical Informatics discussion fora.

References:

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