Abstract:
Medical education and practice are at a cross roads. This article discusses the need to develop a novel, adaptable mixed-platform for supporting health care informational needs for integrating medical learning with practice. The proposed platform enables clients (patient users) requiring healthcare to enter an unstructured but detailed account of their day-to-day health informational requirements that may be structured into a lifetime electronic health record which in turn may be a valuable learning resource for both medical students and practicing professionals. It illustrates the discussion with an operational model for a pilot project that can help to explore the potential of a collaborative network of patient and health professional users to support the provision of health care services, helping to effectively engage patient users with their own healthcare. Such a solution has the potential to allow both patients, medical students and health professional users to produce useful materials, to contribute toward improved social health outcomes in terms of health education and primary disease prevention, and to address both pre-treatment and post-treatment phases of illness that are often neglected in the context of overburdened support services.
Key words: user driven health care, web based collaborative network, electronic health record, operational model, health information requirements
Introduction:
A recent national seminar on perceptible gaps in medical education organized in People’s College of Medical Sciences, Bhopal brought out interesting insights from the speakers and discussants that have been tabulated and submitted as a document to the Medical council Of India. (MCI document 2008)
It revealed that both medical education and medical practice in the country at present were at the crossroads.
Some of the salient points and suggestions that emerged from the seminar were:
1) There are definite perceptible gaps in terms of learning outcomes proposed or recommended by the honorable MCI and actual outcomes achieved (the gaps in implementation of MCI regulations).
2) Medical education stands the danger of increasingly getting isolated from the needs of the people as well as doctors unless we address these perceptible gaps.
3) We need to move away from the present emphasis on summative assessment in yearly bursts that seem to be the only present stimulus for student learning. In short it seems that students mostly concentrate on learning factual information the night before their exams and this memorizing hardly ever translates into effective practice.
4) We need to introduce more continuity in the medical education system in terms of introducing formative learning that utilizes and makes full use of the available 4,200 clinical learning hours in problem based, consequential learning and this needs to be again assessed through equally important formative assessments that would primarily assess how students learn (during those clinical hours) and not just assess what they have learnt (which is what we focus on at present in yearly summative assessments).
5) MCI recommends problem based, patient centered, consequential learning but all that is happening in the current undergraduate medical education scenario is bookish learning.
We need to overhaul the existing curriculum to bring about a positive change in terms of consequential medical education that could address these perceptible gaps.
6) We need to take urgent measures to rejuvenate the lost respect and importance of the family physician as a doctor of first contact.
7) Proper residency training in family medicine is the right of any medical graduate who doesn’t take up any other specialty or post graduate course. as there was so much dissatisfaction after completing MBBS and so much hankering for MD it may be perhaps useful to adopt the US model where we could simply replace the term MBBS with MD and ensure that all doctors get a proper residency training after graduation be it in family medicine or any other specialty they may chose.
Managing medical illnesses in the community is a universal challenge not only because of the inability of medical education to keep pace with medical practice but also because the traditional patient and health professional clinical encounter has evolved into a series of fragmented exchanges of information, often between several professionals. The information exchange between professionals is usually limited to a synthesized ‘factual’ written account – often referred to as ‘the clinical (integrated) medical record’. The synthesized ‘factual’ written account however fails to convey much of the subtleties gained through the information exchanges in the encounter (which would have otherwise built a more valuable knowledge base about a patient). (Sturmberg 2007) The clinical encounter has the potential to actually evolve into an informational collaborative process, i.e. ongoing learning persistent in virtual space and time. A persistent clinical encounter has immense potential advantages for the patient as well as her health professionals.
Medicine is a collaborative effort in problem solving between individual patients and their health professionals. The collaborations also involve others who are directly or indirectly related to the patient and health professional (for example, the patient’s relatives, the practice staff, other members of the physicians’ institutions etc) who provide the necessary support to the two main actors.
We suggest viewing such an integrated approach to health care as ‘User driven health care’ that may be defined as, “Improved health care 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.” (Biswas 2008 a) It needs to be differentiated from the presently more ubiquitous ‘Consumer driven health care’ model, which is essentially a strategy for users/consumers to decide how they may pay for their own health care through multiple stakeholders like employers who provide the money and insurance companies who receive the premiums. (Tan 2005)
Health information management and Health 2.0
Entire individual patient user generated and suitably anonymized informational content initially confined to email boxes or web based individual health record vaults can be further invested in online web pages linked to what is loosely termed as Web 2.0 technologies that may suitably provide matching patient experiential data to generate improved patient and caregiver learning.
In web sites using this technology user-generated tags allow the site to evolve, enabling individual users to conduct more precise searches, make previously unacknowledged associations between facts, and explore a diverse undercurrent of themes to synthesize learning.
It has been recently named Health 2.0 with reference to health care and has been described to be all about Patient Empowered Healthcare whereby patients have the information they need to be able to make rational healthcare decisions (transparency of information) based on value (outcomes over price).
Figure 1: Explaining Health 2.0
Copyright 2007 by Scott Shreeve, MD. Made available under the Creative Commons Non-Commercial Attribution 2.5 License
The Four Cornerstones (Connectivity, Price, Quality, and Incentives) of the Value Driven Healthcare movement begin to create a virtuous cycle of innovation and reform. Transparency serves as a key catalyst in this process by creating positive sum competition that can deliver better outcomes at a lower cost. (Shreeve 2007)
As more information becomes available as a result of increased transparency, there will be a wave of innovation at all points along the full cycle of care, which includes phases where health care professionals Educate, Prevent, Diagnose, Prepare, Intervene, Recover, Monitor, and Manage the various disease states. (Shreeve 2007)
Each and every human has the capacity and likelihood of performing both roles of caregiver and care seeker (patient) in their lifetimes. The illness experience posts would automatically generate related posts depending on the keyword-tags they use to represent their posts and this would enable every user posting his/her individual experience to go through similar relevant lived experiences of other individuals. This would be a tool delivered remotely, often anonymously, and yet may foster a sense of belonging and intimacy. In this way any individual user feeding input into the net can receive automatic feedback that can grow as individual users keep updating their own data in this web based solution. This may function purely on the power of human collaborative intelligence rather than artificial intelligence and yet may prove to be much more efficient.
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 that can shape his future. User driven health care is an attempt to help make those decisions. It is a grassroots proposal to document; valuable individual experiences of patients, physicians, allied health professionals and medical students which have to-date regularly gone undocumented and have been lost to the medical literature that may have actually benefited from it.
(Biswas 2008a text has been reused with permission)
Creating persistent clinical encounters through a web based common platform:
At present most of our ill population is managed in hospitals and clinics (both in the public and private sector).The appointment time a patient is reviewed in the hospital is usually at 2-3 monthly intervals. This discontinuity in patient monitoring may be due to patient related factors for example if a daily wager has to spend a substantial part of his day attending a hospital outpatient department during working hours it may mean no income for that particular day, a farmer may not be able to come for follow up during sowing and harvesting, similarly a busy executive or business man may find it difficult to address his/her healthcare needs in terms of maintaining continuity which is vital to improve health outcomes.
In the interval between the physician visits, the patient (for example a diabetic) on his/her own is expected to continue a judicious diabetic diet, maintain an optimal exercise schedule and dutifully consume all his/her medicines on time (and presumably also have an understanding of correct dosage). Any confusion or queries on the patient’s part would be solved on the next visit unless it can be prescheduled (which is not easy due to the patient related factors mentioned previously). Patients may not record all their queries and may forget to ask some of them during the clinical encounter.
Apart from these usual information needs that are compromised there may be other emotional information needs that would otherwise go unexpressed.
The gap between the paucity of 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 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. (Stewart 2007) and where their patients look for answers outside of the prevailing knowledge frameworks. (Shaughnessy 1998)
Figure 2: From current limited clinical encounter to an ideal persistent clinical encounter
As information needs keep getting suppressed, there may be a gradual build up of patient dissatisfaction other than the worsening of the disease. Timely answering of informational needs that would have resulted in a better-educated patient may have prevented this. Patient education has long been a recognized positive factor in successful management of illness and a good education may result from problem based experiential learning that begins with addressing patient’s information needs (Biswas, 2008a and 2008b, text and images have been reused with permission)
At present most health data exist either as very brief unstructured paper notes that are difficult to preserve and update. As a result there is considerable duplication as well as attrition of a single patient's data at multiple entry points as s/he shifts from one health professional to another across various healthcare facilities.
Often patients do not remember all the minute but significant details in their illness history even on careful questioning – on each occasion we have to reconstruct our stories anew in light of our current understanding. (Greenhalgh 2006) This may however be preserved in regular daily/weekly or even monthly inputs made by the patient her/himself that is stored and summarized into a readily retrievable electronic health record.
Key attributes of the proposed health information management solution platform
The solution will consist of a patient informational input point for producing content in the form of a dynamic electronic health record that evolves with time and is complemented by a web interface with interactive inputs from health professionals for structuring and interacting with this content in between intervals of face-to-face sessions. (Figure 3)
Figure 3: Flow diagram for implementing user driven health care in India
The entry point for patient data would be in strategically located internet kiosks that would contain a desktop with broadband access and would be managed by a person from the same community who would type patient verbal data into the desktop portal in Hindi using English fonts or alternatively record the patient's conversation onto a voice mail.
Patient input data capture and storage:
Unstructured data input
A typical case scenario would consist of a patient user who may visit the Internet kiosk at the end of a working day and pour out his/her physical/mental troubles experienced over the course of the day/week/month all of which may be recorded verbatim into a mail box with an email address (for example userdrivenhealth@email.com). This would be done by the person managing the desktop at the rural/urban health kiosk and s/he would simultaneously mail the same unstructured data to the primary care physician project participant who would then structure the data to the best of his/her abilities taking help of repeated asynchronous online interaction with the patient (and if necessary forward it to other health professionals in the collaborative online network best suited to tackle the particular patient problem).
Patient data may be recorded by the village health kiosk data entry operator simply on video or a voice mail that can be stored online inside multiple email boxes beginning with the internet kiosk email account (for example userdrivenhealth@email.com), the patient's own email account to which this data could be mailed, the email account of the Hindi medical transcriptionist who would convert this raw patient unstructured conversational voice data to text using Hindi and English fonts, to the email account of the language translator who would translate this into English and finally to the primary caregiver in charge of the patient. Other than voice and text, images (still and video) taken by patients, their relatives or caregivers with direct or indirect bearing on their disease (with due care to preserve privacy) may be easily stored in their email boxes (individual health record vaults).
Structured data input
Another approach to data input may be structured entries by a trained Telemedicine operator (TMO) in an internet kiosk (ideally a member of the patient’s family/community). S/He could record patient complaints and history by selecting from various drop-down boxes provided in data entry software. This will help create structured data entry which is also easily amenable to further automated analysis.
The telemedicine operator (TMO) shall be able to choose language of patient’s choice and the data entry screen will be offered in that language. This will increase comfort level of the patient and the operator as the patient would like to express his problems in his own language and the TMO is likely to know patients language being member of the community.
Facility to record unstructured free flow text input (in English) will also be provided so that information not covered in structured input can also be transferred. All information shall be stored in English at the web sever. Unstructured inputs may be converted to structured information as much as possible using natural language processing (retaining a copy of the unstructured inputs as well for review/analysis). Healthcare Provider may be offered the entire health information record in English.
Patient confidentiality and privacy:
This user driven solution will encourage patient users to avoid entering any identifying information, which they may feel uncomfortable divulging or associating themselves with as well as anything that may harm others privacy. The most important identifying information that would need to be omitted is patient names, addresses and names of others that may have been associated with them in the course of their illness history. Patient may only identify themselves using self assigned 10 digit numbers (one suggestion would be to use the patient’s mobile phone number).
Patients maybe expected to have issues regarding safety of using emails but as long as they utilize usernames which they can suitably anonymize and feel comfortable with and stick to not entering any identifying information their privacy and confidentiality would be preserved.
Patient input data sharing and feedback:
Patients will need regular feedback on their informational inputs particularly to address their informational requirements; their disease based queries and its myriad diagnostic and management uncertainties. This can be done by the primary physician in charge of the patient (patients maybe given the option of choosing their own primary physicians). The primary physician in charge can make use of online empirical or experiential evidence to engage in persistent conversational learning with the patient all of which would be stored in the electronic health record (EHR). S/he could also ask opinion of other experts on the collaborative network (through email) again all conversations of which would be recorded on the electronic health record.
Healthcare professionals may enter their feedback onto email and mail it to the email addresses of the individual patient concerned as well as the email address where all patient electronic health records would be stored (as a central place to collate and further process the data for example userdrivenhealth@email.com). Putting all this patient data together on the email box can enable searching for similar patient experiences by simply typing a few matching keywords on to the email search engine and checking out matching patient records stored in the email box. This is one important aspect of the solution that is expected to grow with time as more and more patient data is stored in the email box (which also has an adaptable storage capacity to match user needs).
Other than this, patients can be transmitted limited feedback utilizing existing web-based services that allow free short messaging services (SMSes) to be sent (although limited to 80 characters as opposed to the standard 160 characters available in a basic mobile).
In rural as well as urban India there exists a large digital divide. In recent times a number of attempts have been made to bridge this gap by utilizing mobile phone technology.
These web based services could be effectively utilized by the primary physicians and other healthcare professionals in our collaborative network to provide essential informational feedback to each individual patient tailored to their informational requirements. In this manner the solution could develop a sustained conversation between patient and healthcare professional users. The best return on investment for the patient (who invests her time into this) would be in the form of health professional (and other patient) informational feedback that eventually helps let him/her gain favorable outcomes. For health professionals investing their time into this the biggest driver would be the insights gained into their patient's lives.
For all actors in this collaborative venture learning would be the common driver.
All this learning for the health professional could be organized into health professional E-portfolios linking the health professional with his/her patient records. A patient could look up the range of cases his/her health professional has come across corroborated and validated by the network and decide if this particular health professional has handled a similar case with a similar initial illness trajectory (which could be a new approach to selecting a health professional rather than go by the not so well informed referrals from other health professionals).
Road traveled so far:
We started planning this venture in Malaysia (Biswas 2008b) and wanted to develop it further in India. In Malaysia our collaborators continue to work toward its further development. In India we have tried to make a small beginning by trying to utilize rural school children to interview their parents and help create their parent's basic health record ( to start with in the form of a story of their parent's lives) as a part of their co curricular activity.
At present although the rural school we visit doesn't have a single computer we felt that making a beginning using paper and then following up these parents/patients utilizing a weekly evaluation of the data the students gather from their parents (again on paper to begin with) could eventually help create a record base that would definitely create patient awareness and improve health care outcomes.
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Integrating Health Information management with primary health education and medical student education
Incorporating primary school children as data gatherers for our project would address the healthcare needs of the children as well as their parents where our primary strategy is to create healthcare awareness among them by making them bring out their health issues in the form of their own narratives on whatever they have experienced since childhood and record this for each individual.
This is an attempt to incorporate constructivist principles of creating learning (on healthcare in this case). This perhaps may resonate with recent work by Indian NGOs in fostering problem-solving skills in children and helping them become life-long self-learners (Eklavya 2008). Another major emerging contributor in this area is the One Laptop per Child (OLPC) India, a non-profit organization with its headquarters in the USA. It aims to create educational opportunities for the world's children by providing each child with a rugged, low-cost, low-power, connected laptop with content and software designed for collaborative, joyful, self-empowered learning. Incorporating such learning (for healthcare) at an early stage for children we hope to catch them young when health care prevention strategies are most meaningful.
This would be combined with providing medical help once we have their detailed medical information in the form of a health record that we hope to create and develop with the children, their parents and scale up the information content of the health record through our feedback. In this manner we hope to continue to assess their healthcare needs based on their self recorded illness narratives interspersed in their whole life narratives.
Also once we have a suitable bank of detailed medical information on a substantial representative population we would also have a detailed database of the various representative diseases in the community that would be valuable learning material for our medical students who can study them online and if necessary contact these patients with due permission even at their homes for a fresh community based approach to illness management.
Having such a database can also solve the problem of getting useful patients for assessments/examinations or even other purposes that require patient attendance.
Future trends:
In the simplified solution platform discussed in this article a detailed Personal health record (PHR) shall be accessible to the patient only on the web and a very truncated version of the above may be sent through SMS on demand from the registered user. Once the present basic mobile phone version is phased out in the near future and the PDA (personal digital assistant) mobile phone becomes the basic model along with ubiquitous WiMAX (Worldwide Interoperability for Microwave Access) connectivity, larger PHRs such as these could be easily accessed by patients into their device directly from the Internet.
On completion of the test phase this web-based solution to integrate healthcare E-learning needs can be opened to the world in a simple forum model already in use at present in various web sites using what is loosely termed as web 2.0 technology. 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 a personal health record if s/he is posting as a patient. The individual user could even do this through email and every post made by mail could easily open a new post on to the forum. Most urban PC users in recent times spend most of their Internet time in their mailbox and integrating this solution into the mailbox would target this population. (Biswas 2008b)
Conclusion:
This is an operational model of user driven health care developed in an attempt to optimally answer multidimensional needs, in individual patients and health professionals to cater to an urban-rural Indian community. It is hypothesized that this may allow them to achieve better health outcomes through inter individual collaboration between multiple stakeholders in the care giving and care seeking collaborative network.
Overall, the project will help to explore the potential of a collaborative network of patient and health professional users to support the provision of health care services, helping to effectively engage patient users with their own healthcare. Such a solution has the potential to allow both patient and health professional users to produce useful materials, to contribute towards improved social health outcomes in terms of health education and primary disease prevention, and to address both pre-treatment and post-treatment phases of illness that are often neglected in the context of overburdened support services.
This operational prototype, which still continues to evolve, has been shared with other future stakeholders particularly in the healthcare system. We look forward to the beginning of the validation process along with a future positive collaborative venture in user driven healthcare with multiple stakeholders in the public and private sectors.
Acknowledgements:
Mr Arun Gurtu, Director of Research, People's College of Medical Sciences, Bhopal, India, Captain Ruchi Vijaywarghia, Director, HR and IT, People's College Of Medical Sciences, Bhopal, India, Dr VK Pandya, Dean, People's College of Medical Sciences, Bhopal for their constant support.
Text and images in the write up have been previously published in the corresponding author’s own articles and book chapters (from Blackwell and IGI global publishers) and have been reformatted for this current write up.
Notable among them are:
Biswas et al, Open information management in User-driven health care, Niranen S (2009) (Ed) Open Information Management: Applications of Interconnectivity and Collaboration, IGI Global publishing (In press), article submitted in IIM Ahmedabad journal and the first two articles detailed in the references below.
References:
Biswas, R., Martin, C., Sturmberg, J., Shankar, R., Umakanth, S., Shanker, & Kasthuri AS (2008a). User driven health care - Answering multidimensional information needs in individual patients utilizing post EBM approaches: A conceptual model. Journal of Evaluation in Clinical Practice,14, 742-749.
Biswas, R., Maniam, J., Lee, E.W.H., Das, P.G., Umakanth, S., Dahiya, S., & Ahmed S (2008b) User driven health care- Answering multidimensional information needs in individual patients utilizing post EBM approaches: An operational model. Journal of Evaluation in Clinical Practice, 14, 750-760.
Eklavya (2008) … This approach helps children become life-long self-learners Retrieved on Dec 2008 from www.eklavya.in
Greenhalgh T (2006) “What seems to be the trouble? Stories in illness and healthcare”. Oxford, Radcliffe Publishing
Joshi Rajeev and Bhattad Lalit (2005) “Multilingual Interface for Telemedicine Applications” – paper presented in International Conference on Telemedicine INTELMED (2005) Bangalore, India.
MCI document (2008) presented as proceedings of the national seminar on perceptible gaps in Medical education-objectives vs. regulation, People’s College of Medical Sciences, Bhopal. (December 21st 2008)
Shaughnessy AF, Slawson DC, Becker L. (1998) Clinical jazz: harmonizing clinical experience and evidence-based medicine. J Fam Pract 1998; 47:425-8
Shreeve S, Holt M, O'Grady L, (2007) Health 2.0 Definition, Wikipedia, Retrieved on Dec 2007 from http://health20.org/wiki/Health_2.0_Definition
Stewart WF, Shah NR, Selna MJ, Bridging The Inferential Gap: The Electronic Health Record and Clinical Evidence, Health Affairs, March/April 2007; 26(2): w181-w191.
Sturmberg JP. (2007). The Foundations of Primary Care. Oxford, Radcliffe Publishing