User driven healthcare FAQs revisited

Note from NPW, moderator: Here are the questions from Michele Melzer, USA: https://www.hifa.org/dgroups-rss/m-health-innovate-72

1. Mobile phones are used to search for information. What sites are being used for reference and how are these sites vetted for accuracy and appropriateness for that area (lack of resources for medications and diagnostic tools?) Are the sites updated and by whom? language? any sites recording? native language?
2. Sharing experience must be careful that these experiences were using appropriate meds, etc.
3. Is there a mechanism to have someone with additional education review WhatsApp discussions for gross errors or is this too intrusive?
4. How are physicians re-imbursed for time spent with community health worker? Is there a problem with this?]

These are thought provoking questions [*see below] and around mostly what we have labeled "user driven healthcare" that has kept us busy over the last few decades.

The devices have changed from unwieldy desktops to ultraportable mobile phones and yet the (research) questions remain same.

1) This question is pivoted around "user driven learning that dwells on features of human learning that are unchanged such as the role of collaborative social interactions but certain aspects have been evolving and helping to create a learning transformation through web based technologies." More examples in our previously published book here :
https://www.igi-global.com/chapter/user-driven-learning-environment/73827

I will try to share an example from rheumatology accessed right now from my mobile phone randomly from a publicly accessible "patient user driven rheumatology group" linked below :

https://www.facebook.com/groups/3685130571554200/permalink/5289344691132772/

As you can find in the above example "The need for information is often much more than a question about medical knowledge. Doctors (and patients) are looking for guidance, psychological support, affirmation, commiseration, sympathy, judgment and feedback. This ‘information need’ is particularly poorly explored, and yet it may well be the most important need and the biggest stumbling block to a technical solution. Also, most of the questions generated in these group consultations go unanswered. (Quoted from https://www.bmj.com/content/313/7064/1062.abstract).

2) As you may find that many of the medicines suggested in that real mobile driven discussion link above may not have been appropriate and we don't get to know if the real patient seeking information there actually followed all that spectrum of advice around her pain but there are countless such user driven groups with countless such advice and users are left to use their
own judgement short of authoritative guidance.

3) We have fairly busy whatsapp discussion groups working 24x7 in trying to resolve "patient centered questions" raised by multiple stakeholders in our user driven healthcare groups and yes often the person who moderates from a position of power has his say (albeit supported by available evidence) and unlike unmoderated user groups such as possibly the one shared above, we
try to feed all these individual case based experiences into an open access dashboard toward future processing through AI driven case based reasoning engines. More about case based reasoning here : https://www.ncbi.nlm.nih.gov/pmc/articles/pmid/15533257/

4) My favorite "learning vs earning" question. :-) It all boils down to power transactions where information is bartered for "buy in" from community health workers who support a complex "learning and earning" ecosystem where patient always remains the primary beneficiary of medical education and their footfall brings money to the secondary learner beneficiaries of medical education through billable interventions taking care to make them focused to each patient requirements and not fall into the overdiagnosis overtreatment trap that is characteristic of population based care where the patient is a blur of a tree in the densely packed health information forest.

Joining the dots in this money trail (in continuation of point 4):

1) The community health worker bills the patient for sharing his her case report to an online case based blended learning ecosystem CBBLE.

2) The patient (primary beneficiary of Medical education) obtains information for which the community health worker (first secondary beneficiary)is compensated and

3) the other secondary beneficiaries such as medical students get compensated in terms of learning and

4) medical teachers get compensated to see their medical students learning outcomes getting translated into their "patient improvement outcomes", which in turn does wonders for

5) their practice reputation while they continue to draw their teacher's salary and keep climbing the academic ladder publishing all their valuable patient centered learning experiences and that completes the cycle starting and ending with the patient (primary beneficiary of medical education).
More here : http://userdrivenhealthcare.blogspot.com/2015/06/global-learning-toward-local-caring.html?m=1