This was my response to queries posted on this topic in the forum HIFA2015.
"Would such a database be useful as a reference or learning tool to support the delivery of health care in low-resource settings?"
It would be the most useful database ever utilized in medical practice be it the developing or the developed world.
To quote Dr Smith's editorial in the same journal, 'GPs might, and will, use their experience - as they have done for centuries. Their experience might be supplemented with evidence from high quality databases that follow every one of a cohort of patients. But they might also search our journal and database to find a patient just like theirs and see how the patient was treated and what happened to him or her (follow up will be very important).'
"Who might use it - health professionals, researchers, policymakers? How might it be used?"
It would be utilized by multiple stakeholders in the patient's journey though his/her illness. These would include among others the patients, their relatives, their immediate primary care as well as their referral physicians.
"How might it be used?"
One way to better the usage would be to create portfolios of contributors be it patients contributing their own disease perspectives or health professionals reflecting on their day to day activity and then link these with web 2.0 tools commonly available in social networking sites such as Facebook. In this way patients and health professionals can remain in touch just by following their status updates (thus maintaining informational continuity or follow up which as Dr Smith pointed out is vital to positive health outcomes).
"What features would such a database require to provide maximum benefit for end-users in developing countries?"
Free to publish (I am sure it will be for those in HINARI countries but that leaves a lot of poor Indian academics in the lurch due to Indian's newfound non HINARI exalted status).
How would an Indian villager access it to share his stories? Well a villager could go to the nearest internet kiosk and his story could be uploaded by the kiosk operator (that would also create an employment opportunity).
Finally do we have a quicker and easier way of doing this instead of having to go through a lengthy peer review process (which could be better performed in the post publication rapid responses from those who happen to discover the story as it matches theirs)?
We have tried to create a similar model where we have health professionals and patients as group members with their individual portfolios and these health professionals and patients stay in touch with each other by just following each others status updates.
Many of the patients have chosen user names (one such is "English Patient" that you will find on the site) to protect their identity.
Feel free to join the group, add the patients or health professionals to your contacts and start following their status updates. I am sure you will find that just sharing your concern with these patients (with or even without sharing your expertise) may make this a different experience.
http://www.facebook.com/group.php?gid=77835023213
You could begin with by adding "English Patient" to your contacts, read her notes, (which are categorized into an unstructured one she created and the structured summary that her physician did) and finally do go through her status updates and the comments of the health professionals who responded to them.
We have another similar group for our medical students as well:
http://www.facebook.com/group.php?gid=102177045567
warm regards,
rakesh
http://peoplesgroup.academia.edu/RakeshBiswas
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