ArogyaUDHC ICMR-Short term project:Applying ‘User driven health care' to improve health outcomes in ... disease utilizing online social networking and information communication technologies.

Below is an abstract that was selected for an ICMR-Short term project http://www.icmr.nic.in/shortr.htm in 2010 where the UDHC concept was planned to be utilized by one of the students to study its application and outcome around one disease. This is being shared here again as current students from the ArogyaUDHC-BMJ program http://journals.bmj.com/site/marketing/landing-pages/Indian_Caseelectives.xhtml have expressed an interest in wanting to apply for the ICMR-STS project primarily toward utilizing the ArogyaUDHC tool and studying its effects on various chronic diseases.

Title (upto 25 words),

Applying ‘User driven health care' to improve health outcomes in Chronic Obstructive airway disease utilizing online social networking and information communication technologies.

Introduction/Background (upto 150 words),

Chronic obstructive airway disease is a problem with considerable implications on morbidity, mortality and quality of life for those affected. (1). Improvement of health outcomes and quality of life can be achieved by a meticulous monitoring of patient parameters that requires informational continuity utilizing online learning and health education between multiple stake holders such as patients, their relatives and health professionals, a concept that has been recently termed “User Driven Health Care.” (2-5).

Objectives (upto 100 words)

To demonstrate the effect of online social networking through information communication technology on improvement of health care outcomes in chronic obstructive airway disease.

Methodology (upto 750 words),

Institutional ethical clearance will be taken for the study and all patients participating in this study shall sign an informed consent form (prepared in the patient’s own language).

Chronic obstructive airway disease patients presenting to People’s College of Medical Sciences will be selected according to our inclusion and exclusion criteria ( below) and will be initially evaluated with a complete history, detailed clinical examination and investigations following which the de-identified data shall be uploaded to an online platform http://www.udhc.co.in/ followed by further processing of these initial inputs onto  a social networking web site (https://www.facebook.com/groups/tabularasa).

 The patient will be monitored and followed up weekly by the student and an entire network of health professionals in the group.

The patient shall be assisted by the medical student to create the patient profile and the medical student shall enter regular/weekly status updates about her/his symptoms which will be shared with the primary physician in charge of the patient and a social network of care providers for their advice.

Study Design

Quantitative:

The quantitative component of this study will be a prospective, randomized controlled trial and patients will be allocated either to a ‘control’ group or to an ‘informational intervention’ group.

A St George’s respiratory questionnaire for COPD patients (SGRQ-C), standardized assessment tools will be utilized to assess the changes in quality of life at the beginning and end of the study period. The control group will be a similar COPD patient group who will not receive the above informational intervention. Quantitative outcomes will be compared at the end of the study period in terms of improvement in quality of life with and without the health informatics intervention.

Inclusion criteria:

a) Adult patients presenting to People’s College of Medical Sciences with a confirmed diagnosis of chronic obstructive airway disease established on clinical features suggesting progressive airway obstruction, pulmonary function tests and radiology.

Age 50-75 years; FEV1 70% of reference values; FEV1/FVC ratio 65%,

b) Availability of a mobile number and phone

Exclusion Criteria:

Mentally unsound

Extremes of Age

Other co-morbidities and confounders

Data Analysis:

Quantitative:

We shall assess the impact of informational therapy on the Quality of life in COPD using an unpaired t test with adjustment for baseline score.

Qualitative:

A parallel qualitative approach shall enable us to identify themes during data collection, rather than test predetermined hypotheses. We shall incorporate a prospective component to capture participants' experiences and views at different stages during the screening process and to explore whether and how these changed after receiving their results.

Implications/Expected Outcome (upto 75 words),

a)      The monitored COPD group will fare better than the unmonitored control group in terms of health care outcomes namely quality of life (measured quantitatively) and other hitherto unexplored and undiscovered facets of a patient living with chronic disease (measured qualitatively through open ended patient narratives).

b)      This study would be an initiative to explore in detail the complex trajectories most of our chronic disease patients follow and are yet undocumented due to lack of informational continuity and poor access to the day to day lives of these patients.

Bibliography (upto 5 references)

1. Ray D, Abel R, Selvaraj KG: A 5-yr prospective epidemiological study of chronic obstructive pulmonary disease in rural south India. Indian Journal of Medical Research 1995, 101:238-244.

2. Biswas, R., Martin, C., Sturmberg, J., Shankar, R., Umakanth, S., Shanker, & Kasthuri AS. User driven health care - Answering multidimensional information needs in individual patients utilizing post EBM approaches: A conceptual model. Journal of Evaluation in Clinical Practice, 2008, 14, 742-749. http://www.ncbi.nlm.nih.gov/pubmed/19018905

3. Biswas R, Smith K, Martin C, Sturmberg JP et al ( 2009) Open Information Management in User-Driven Healthcare, Chapter XVIII, in (Eds) Niiranen S, Yli-Hietanen, and Lugmayr, Open Information Management: Applications of Interconnectivity and Collaboration. Hershey, PA: IGI Global

http://www.infosci-on-demand.com/content/details.asp?ID=32397

4. Biswas R, Maniam J, Lee EWH, Umakanth S, et al (2008 ) Electronic collaboration toward social health outcomes, in (Eds.) Salmon J, Wilson L, Handbook of Research on Electronic Collaboration and Organizational Synergy, Hershey, PA: IGI Global

  

5.    Biswas R, Martin C et al., Social Cognitive Ontology and User Driven Health   Care, in  (Eds) S. Hatzipanagos and S. Warburton. Handbook of Research on Social Software and Developing Community Ontologies, Hershey, PA: IGI Global

http://new.igi-global.com/bookstore/TitleDetails.aspx?TitleId=21365

 

Reaching out Hospital services to people through community managed ‘E-Health-ATMs’: ongoing project

Objectives: This project aims to promote transparency (at the same time nurturing patient privacy) and develop a common platform for shared learning and practice between hospital and community based health professionals as well as patients and other stakeholders.

Strategy:

A major deliverable from this project is the establishment of community based ‘electronic registration and follow up’ through E-Health-ATM centers integrated to tertiary or even district Hospitals in India..

These E-health-ATM centers are managed by interested and trained volunteers residing in the community also labeled as ‘trained community health entrepreneurs’ TCHEs (first mentioned here: http://www.missionarogya.org/p/arogyaudhc.html) and their job is to a) interview patients, record their history and past investigation records and b) further upload the relevant individual patient details onto an online open health record to create individual health records such as is already available here: http://www.udhc.co.in/INPUT/input_directory.jsp after removing ‘patient identifiers’ to nurture patient privacy.

To develop the HealthATM analogy (as a populist illustration for our workflow) this process can be thought of as analogous to depositing your money (data) in a bank. The physicians (bank employees in various roles) managing the website (bank) would then add informational solutions to not only tackle the current problems of these patients but also support them with regular informational continuity for the future. Please see this output page (HealthATM output) http://www.udhc.co.in/SOLUTION/solutionList.jspwhich is analogous to getting your money back from the bank with interest.  

The role of TCHEs

This can be thought of as analogous to Bank policy Agents (LIC policy agents in India?) but in this case they not only market and sell their bank services but also add to its major work input in terms of uploading the initial deposit of patient inputs in the form of raw unstructured or semi structured narrative data (sample this real data uploaded here in Hindi-English: http://www.udhc.co.in/INPUT/displayIssueGraphically.jsp?topic_id=826, as well as here in Bengali-English http://www.udhc.co.in/INPUT/displayIssueGraphically.jsp?topic_id=811 ).

Role of website health professional moderators: The initial raw data entered by the TCHEs is further structured by the website health professional moderators toward finding evidence based solutions (solutions for the previously linked inputs here 1 in English: http://www.udhc.co.in/SOLUTION/viewSolution.jsp?solution_id=94&topic_id=826, and 1 in Hindi: http://www.udhc.co.in/SOLUTION/viewSolution.jsp?solution_id=95&topic_id=826) 2 in Bengali-English http://www.udhc.co.in/SOLUTION/viewSolution.jsp?topic_id=811&solution_id=96 , http://www.udhc.co.in/SOLUTION/viewSolution.jsp?topic_id=811&solution_id=97 after matching the individual patient data with general evidence based data.

Collaborative role of all stakeholders: Both the TCHEs and online health professional moderators along with the local physician in charge of the patient would have major contributions to the workflow not just in the initiation of these patient records to the website but also in maintaining the much needed informational continuity where all these stakeholders work in online collaboration toward achieving the best health care outcome for their patient at hand.

Value Addition to Hospital Management teams: 

1) Increased inflow of patients seeking health care services from your hospital.

2) Transparent and Informed health care for patients will mean better health outcomes for patients and better financial outcomes for your hospital.

3) This is a novel project and perhaps the need of the hour. This will also provide an opportunity for a training program in this area and developing a future work force for this form of health care delivery.

Risks: 1) As this is novel and aims for transparency and better health care outcomes for people it may upset other stakeholders with different motives.

2) Extreme care shall be required to nurture patient privacy and at the same time promote transparency.

3) We would have to have a strong and committed network of health professionals to sustain the high standard of ‘care’ we are promising.

Requirements to sustain the Project:

Financial investment required for this from the Hospital management will be minimal.

Current Status of this project:

Currently this model is being piloted with a few available volunteers, 2 from West Bengal, 2 from Madhya Pradesh and being primarily coordinated regularly from Medicine research lab PCMS, Bhopal.

TCHE/E-HealthATM-agent strategy for each Location:

TCHE in the hospital: S/he is a hospital employee with a common-sense interest in patients and is able to type and enter data into the computer. S/he needs a net book computer along with a data card connection for which s/he shall be adequately reimbursed (with another Rs 2000/- that will be added to her/his salary other than the financial incentives for each record…currently s/he is using the research lab desktop computer and the hospital internet uploading patient data amidst her other clerical responsibilities).S/he interviews people with illnesses who present to the hospital, records their history and scans relevant past investigation records and takes pictures of relevant clinical findings and radiology and uploads all the relevant individual patient details (data) onto an online open health record to create individual health records such as already available here: http://www.udhc.co.in/INPUT/input_directory.jsp  after removing ‘patient identifiers’ to nurture patient privacy.

TCHE in the community: Mr/Ms X is a semi employed man/woman with a current interest in people and health along with a common sense ability to enter data into the computer S/he has a net book computer along with a data card connection for which s/he is adequately reimbursed. S/He runs a E-HealthATM Center from her/his house in a rural/urban community. S/he interviews people with illnesses who present to her house, records their history and scans relevant past investigation records and takes pictures of relevant clinical findings and radiology and uploads all the relevant individual patient details (data) onto an online open health record to create individual health records such as already available here: http://www.udhc.co.in/INPUT/input_directory.jsp  after removing ‘patient identifiers’ to nurture patient privacy.

Financial burden on the Hospital Management: Initial phases it may come to around 10,000 per month till this strategy gains business viability. Initial cost of 1 net-book computer for one employee-volunteer in the medicine research lab would also add up to 20,000/-. Total cost to the hospital management for the project: 20,000 initial cost and 10,000 recurring cost till it starts giving returns.

Further desirable incentive for each doctor in the team: Hospital Management to pay for their data card cost and monthly internet bill to the tune of 2000/- monthly.

Financial Returns for the Hospital Management: 

1)      Possible revenue from patients in the community who utilize these Hospital and community integrated E health center services

2)      Improved hospital flow of patients generating added returns on this small investment.

Ancillary but Mandatory Requirements from the Hospital Management:

1)      Institutional Ethical Committee Clearance

2)      Legal expert opinion

3)      Ensuring other faculty co-operation

Points for discussion and debate: 

1)      Should we charge the patients for this service by our community volunteer to recover for the resources spent in generating the online electronic health record for each patient? Is there any legal or ethical clarifications necessary for this?

Workflow for a Blended Learning Medical Elective with BMJ

Here is our workflow ( i am sure you have seen a brief outline here: http://promotions.bmj.com/jnl/bmj-case-reports-student-electives-2/)

Upon joining us you will be required to join our regular ward rounds. The regular workflow in our unit in the department of Medicine, begins with our residents leading the team of medical students and Consultant professors toward collecting data from patients’ bedsides.

Certain immediate decisions are taken on the spot by the Consultants and a few non-urgent ones are kept for processing later. Once the Consultant professors and residents have finished data collection and hands on emergency management rounds of the patients in their bedsides, the data is brought to our office in the research lab for further collaborative processing.

Further processing involves trying to

a) Explore multiple facets of the complex issues around the 'case' in its real-life settings. (See details around this common-sense out-of the-box thinking approach here: http://www.biomedcentral.com/1471-2288/11/100 and here: http://www.pitt.edu/~super1/lecture/lec50421/001.htm)

b) Search for current best evidence for diagnosis and further management of the described condition in each patient. (We prefer Google though Pubmed skills are always welcome). :-)

c) Match the available individual patient data (particular evidence) to generalize-able patient data/current best evidence available online and

d) Help the team come up with a contextually matched patient management plan personalized for each patient.

As mentioned in the BMJ link you will learn on our rounds to:

a) Acquire clinical skills for efficient patient data capture (mostly from our staff accompanying you on the rounds but also from the professor if/when necessary)

b) Acquire efficient clinical data processing skills (as detailed above)
  

c) Acquire skills for individual patient centered clinical audit and feedback to all stakeholders involved in the patient’s care (this may have future entrepreneurial implications...more later below).

d) Acquire skills in writing your individual patient centered experience during the elective as a case report and submit it to BMJ Case Reports for peer review (no Fellowship fee required).

Most of your two weeks will be spent in thinking and writing about the cases that you see with us and would like to publish with us. You will not be allowed to write nurses orders or perform any procedures (as that requires a legal registration with the local medical council here and may also disrupt local functioning). The thinking and writing will continue at your endaround your chosen cases even after your departure. Authorship will be allocated as per these guidelines: http://www.icmje.org/ethical_1author.html

Authorship credit can be obtained for 1) contributions to conception and design, analysis and interpretation of narrative-data around the case 2) drafting the article or revising it critically for important intellectual content; and 3) final approval of the version to be published.

You will require to write the case right from day one in a blended learning approach even as it evolves (at least the patient's history if not the discussion) and post it right away on a blog (after ensuring that you obtain signed informed consent)  and share the link also with our online processing forum 'tabula-rasa' where you have been already added through your face-book portfolio.

The only important thing we offer you here is an experience in 'patient-centered-learning' and the only reward we expect from you is to contribute to our learning by helping us explore our patients further even as you proceed to write about them. Learning is to a large extent self-directed and dependent on reflective observations and abstract conceptualizations around the concrete events that we experience. Our concrete experiences in turn depend heavily on our curiosity and our ability to ask questions without worrying about giving away our ignorance.

DO’s and DON’T’s during your stay:

Don’t write any prescriptions on the hospital file.

Do write about the case in your own notepad and share it through the online forum after ensuring you have taken the appropriate authorization and informed consent from the patient.

Don’t quarrel with the nurses and other staff

Do interact with them in a positive manner to benefit your patient/s who you shall be researching, reporting and publishing at the end of your elective.

Worst Case Scenario: You may expect us to teach you and not find our case-based discovery-driven learning worthwhile and also find it to be largely a waste of time and money spent in accommodation and travel. Consequently you may not be able to write anything worthwhile around any of the cases you meet in these two weeks.

Best Case Scenario: You may enjoy the daily case-based learning experience, ask difficult questions from our team without fear and help us to find out the answers and learn together using a blended approach and publish y/our case in http://casereports.bmj.com/. At the end of the elective you receive a certificate from us and BMJ other than your published case as a proof of your having completed this elective. Once you begin to publish cases in BMJ you may start getting reviewer assignments and eventually you can work your way into the BMJ editorial board. Following this experience you may even become a social entrepreneur (for example you may open a case-based clinical audit CA firm and much like a Chartered accountant get paid to inspect and set right patient-management patterns of other health professionals. 

Hope your stay with us generates the best case scenario that you can cherish throughout your life.