Meeting information needs: The role of clinical case reports

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

Translating clinical knowledge into wisdom

I would like to share another quote from Osler (also contextualized in another paper in the same issue of the Journal with Carmel and Achim as co authors):

http://www.ingentaconnect.com/content/bsc/jecp/2008/00000014/00000005/art00021

"Carry a small note-book, and never ask a new patient a question without note-book and pencil in hand...Begin early to make a three-fold category - clear cases, doubtful cases and mistakes. And learn to play the game fair, no self-deception, no shrinking from the truth; mercy and consideration for the other man, but none for yourself, upon whom you have to keep an incessant watch. It is only by getting your cases grouped in this way that you can make any real progress in your post-collegiate education; only in this way you gain wisdom with experience."(Osler 1904, 1928)

Another definition of Knowledge and wisdom comes from Information theory:

Knowledge is information that can be easily recalled ( Imagine a very knowledgeable person who expounds volumes on a particular topic that may be vaguely related to the query you have posed but hardly goes anywhere near answering it). Even google is quite knowledgeable that way and can even often answer our queries after giving us a lot of information options to choose from.

Wisdom is in being able to apply knowledge in a manner that answers our queries with minimum noise or redundancy in the information conveyed. This off course just remains a human trait for now, I am not sure how long though.

I am very interested in clinical problem solving exercises (which you mentioned about your student) that would apply a patient centered stance rather than the disease based stance that we are compelled to publish as case reports.

I wonder when we shall get a case reports journal which would include patient's perspectives as well and not just talk on the disease. This may have come out in isolated snippets as the patient's journey in BMJ but its time we had a complete journal devoted to it.

Or better still an open access online data base that keeps getting regularly updated...Or why not conate/collate already accumulated patient health professional experiences available on the net to help solve our clinical problems in a patient centered manner on a regular basis? ( this is probably the bottom line in the other paper with Carmel and Achim in the same issue of the journal)