Revitalizing Informal Healthcare: Solutions and Strategies

1. Revitalizing Informal Healthcare: Solutions and Strategies Rakesh Biswas Professor of Medicine, LNMCH, Bhopal, India

2. Perspectives in Informal healthcare “... he noticed a ‘pea-sized lump’ on the roof of his mouth. A local GP dismissed it as a reaction to a fish-bone, but having borrowed textbooks from a medical student in the next room, he self-diagnosed a squamous-cell carcinoma. ”

3. Perspectives in Informal healthcare “... it took him months to arrange a biopsy at Chittaranjan Cancer Hospital; the pathology confirmed his diagnosis. Knowing he had received a death sentence, Sen and his family pushed for what was then, in India, a new form of treatment: radiotherapy.”  Quoted from Paul Farmer: http://www.lrb.co.uk/v37/n03/paul-farmer/who-lives-and-who-dies

4. What is Informal healthcare? • Self-Care? • Care provided by a relative? • Care provided by a medical student? • Care provided by unlicensed-healers/generalists/experts?

5. Perspectives in Informal healthcare? Definitional Criteria • No training? • No salary (Entrepreneur)? • No registration? • No professional association? Sudhinaraset M, Ingram M, Lofthouse HK, Montagu D (2013) What Is the Role of Informal Healthcare Providers in Developing Countries? A Systematic Review. PLoS ONE 8(2): e54978. doi:10.1371/journal.pone.0054978

6. Informal vs. Formal healthcare • Generalist vs. Expert • Approachable vs. Ivory tower • Unique Exploratory vs. Usual Evidence based • Accommodator vs. Assimilator (learning style)

7. Informal to Formal transition? • A medical student’s journey • Quest for knowledge and power • Accommodator to Assimilator cyclical Learning style (Kolb’s) • Informal formal duality ( experts also need to think informally anew when confronting the unknown)?

8. Perspectives in Informal healthcare? • Today’s Formal was yesterday’s informal? • Today’s standard treatment was yesterday’s experimental and tomorrow’s junk? • Nature of scientific revolutions and shifts? • Learn to live with and optimize constant change ?

10. Informal healthcare Strengths? • Effective error and power check? (Sen first slide?) • Informally negotiate the jungle of evidence that naturally keeps changing • Potential window to better current day formal healthcare?

11. Who is an informal healthcare provider? Everyone

12. Can we involve everyone in healthcare? • Everyone has been involved informally since time immemorial by virtue of their being a patient at some point in their lifetime? • The Informal healthcare movement has run in parallel over the ages since the birth of human healthcare?

13. Can we optimize everyone’s participation in healthcare toward achieving better health outcomes?

14. Can we do this in an open, transparent, accountable, ethical and legal manner?

15. How?

16. Informal healthcare lessons for Indian healthcare? • Current healthcare needs of India are to a large extent met by unlicensed healthcare practitioners. • Current crop of unlicensed-healers in India tend to copy 'formal-healthcare,' and this is often done poorly resulting in low quality health-care.

17. Unlicensed healthcare to Informal but open-accountable healthcare? Create a different group of 'informal-health-care' workers such as 'patient-information-communication-managers.‘ PICMs Not to provide medicines or care but to create informational awareness in the community both among patients and doctors Serve as effective 'clinical-auditors' and instil error-check mechanisms to benefit both doctors and patients.

18. Informal participatory learning ecosystem? Pilot project currently serves both urban and rural-remote areas in two locations in India Patients receive access to a local and global network of 1000+ health-professionals through their ‘information communication managers’ PICMs.

19. Village healer unlicenced Patient’s Wife and family Experienced Global physician Patient Primary doctor at the PHC Community health worker CHW and Patient information communication manager PICM Physicians and medical students in Urban India ANM at the village PHC

20. Informal healthcare as Informational healthcare? • Patient’s information requirements are gathered by a community based informal intermediary PICM • Shared (after obtaining informed patient consent and de-identification) with an online global network • Eventually an evidence based resolution of patient requirements achieved with a lag time in days

21. An Informal social media driven participatory learning ecosystem

22. Informal social media driven participatory learning ecosystem

23. Publications as a formal by-product of an informal learning ecosystem?

24. So what? Strengths Weaknesses Opportunities Threats

25. Strengths and Opportunities Generation of new employment in the community. Transition of workload from over-tasked physicians to community based Patient information communication Managers PICMs Exposure for students and professionals to unique cases; and innovative, interdisciplinary health solutions.

26. Strengths and Opportunities • Expansion of this ‘ecosystem’ to other sites in India and globally. • Engagement of students and physicians globally • Vibrant global online community and open-access learning platform, interfacing society with science as well as delivering improved care to more patients in real time.

27. Weaknesses and Threats! • No takers in formal medical curriculum • Threat of usurping the formal medical curriculum • Patient privacy and confidentiality ethics optimization

28. Q and A: Brutally honest feedback please! Did they catch the chimp who made your slides?---Dilbert rakesh7biswas@gmail.com Next slide for Q&A

29. Q&A: Let’s begin? • First step toward collaborating to develop a global participatory learning ecosystem? • Scale from a grassroots village-sub-center level by training their local potential PICMs? • Formalize training initiation, assessment and participatory deployment or just let it continue informally?