User driven health care

Meeting information needs: The role of clinical case reports

2009-05-23T21:51:00.000-07:00

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

Experiences on Medical Education networking

2009-02-18T08:55:00.000-08:00

To share experiences on medical education networking I guess I won't have to go back further than when I was an undergrad medical student.

I always thought the best way to crack the assessments would be to know what our examiners knew. A bit of networking with them would have allowed me to know what was on their minds but then getting to get to know them was a major challenge in our college where even the internal examiners were actually from a different college (although from the same university).

So we had to restrict ourselves to knowing what was general knowledge ( I believe the MCI calls them "must know").

However a bit of networking with our hostel seniors did allow us a sneak peak into the previous assessment scenarios with interesting tit bits on the examiners as well.

Hostel life that way was a great place for networking.

I soon grew out of the assessment networking fever after having completed UG although I could never grow up from being a medical student: http://student.bmj.com/issues/03/02/reviews/41.php

In my clinical practice I realize that networking is essential to success and each and every new workplace offers its own challenges in setting up networks from scratch ( I have changed a good many places from Kolkata, Chandigarh, Nepal, Bangalore, Malaysia and finally Bhopal).

However online networking gives me an opportunity to maintain older networks with ease. My facebook contacts ( 250 and growing) are mostly people who I met on my previous institutions, many of them students sharing their life pictures ranging from holidaying in US or Borneo to getting married or having children etc etc.

Wish I could have kept in touch with my patients in the same manner.

Facebook gives me a hope that some day in the distant/near future we shall be able to network more meaningfully with our students and patients.

Open health information management and user driven health care

2009-02-07T21:23:00.000-08:00

What if we have user driven health records generated in the community by patients, relatives IT professionals (call them PHR, EMR whatever) and this was stored in an openly accessible platform (without patient identifying data) and this in turn was utilized effectively to upgrade stage 6 and 7 of Hospital records? (HIMSS says there are 7 stages of hospitals, most US hospitals on stage 3 and none on stage 7.The seven stages are : Stage1 Lab, Radiology and Pharmacy all networked, Stage 2 Clinical Data repository, Controlled medical Vocabulary, Clinical Data Support System, may have Document Imaging, Stage 3 Clinical Flow Sheets, CDSS, PACS, Stage 4 CPOE,CDSS , Stage 5 Closed Loop, Stage 6 Physician documentation complete, Stage 7 Medical record fully electronic)
.

http://www.igi-global.com/reference/details.asp?ID=33436&v=tableOfContents (chapter XVIII)

I know it sounds whacky but I feel this is actually what is happening today on paper (minus a lot of valuable data that goes unrecorded due to time and resource constraints thus making our present paper records useless...barring exceptions).

What is happening today is that the same PHR exists in an individual patient's and his/her relatives mind and a fracton of it is handed out to the busy clinician who records an even lesser fraction of it in his paper record. Thus a valuable opportunity to share patient and health professional driven experiential insights is lost.

openEHR platforms are changing for the better daily and the coming years will remain exciting for the clinical informatics community.

Van Couvering Is Not a Verb: User-driven health care

2009-02-05T07:54:00.000-08:00

Van Couvering Is Not a Verb: User-driven health care

user driven health care for plants

2009-01-25T23:50:00.000-08:00

I guess the following discussion that I generated on a list serv may serve as an example:
We have noticed these leaf changes in our queen's crepe myrtle from a potted sapling since Jan 2008 (image apr 18 2008) as they persist even today although the plant continues to thrive. (Image Jan 25 2009).

Would be grateful for comments, suggestions regarding these peculiar changes and remedies.

rakesh

Response 1

I notice a couple of leaves having a sort of crumpled appearance. Itcould be the larvae of some insect on the rear side of the leaves.Sometimes, the moths lay their eggs on the rear portion of the leavesand the larvae build some kind of cocoon around themselves. If that isthe case, removing the cocoon should help.regards

Yazdy Palia.

Response 2

Rakesh-- Occasionally I've had an occasional deformed leaf, usually caused by either minor insect damage or drought stress as leaves are starting to expand. Again, I wouldn't worry about it at all. Enjoy the color of the new growth!

Regards--
Ken Greby,
Broward County,
Florida USA

Response 3

My own:

Thanks Ken.

Yes I guess this is a minor problem after all as long as they aren't failing to thrive.

rakesh

Thanks Yazdy.

I shall keep that in mind.

Meanwhile the discussion contiues to evolve:

Hi Yazdy,

Whenever u see the leaves are being eaten/crumpled in a potted plant, u tend to use the pesticides to remove the infection.

However, many a times it is a food plant of caterpillars of butterflies or moths. Although all the leaves are eaten and the the entire plant becomes leafless, dont worry. It is the natural process which u should not interfere into. After some days, these caterpillars will form a pupa/ cocoon and imrge into a butterfly or a moth. Eventually, the plant will grow new leaves again.

i have reared many butterflies and moths so far sucessfully.

please remember when u remove a cocoon from a leaf, u kill a butterfly or a moth before it is born.

cheers,

shubhada

Hope it continues...

Cheers to pluralism.
rakesh

Translating clinical knowledge into wisdom

2008-12-17T08:51:00.000-08:00

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)

A patient's journey: finding keys to a locked in state

2008-12-08T07:32:00.000-08:00

December 7
He fell down from his bed today. Was it that his power was returning?

He had developed a slowly progressive weakness beginning from his left arm and spreading to involve his right arm and subsequently right leg and left leg. They also noticed tremors that were coarse and static but fast and also involved his head that went side to side in a 'no' fashion.

That was two years back, much before he fell from his bed today, much before the day two weeks back when he suddenly developed a complete paralysis of all his muscles to the extent that he could not lift a finger or utter a word although he could see and hear the world (which they/we didn't realize initially).

He could however move his eyelids and this was what brought his diagnosis to our notice.

He had locked in syndrome a recognized entity that has been much discussed before.
See:
a) http://www.bmj.com/cgi/content/full/330/7488/406

b) http://www.bmj.com/cgi/content/full/331/7508/94

If we think of our nerves that travel from the pyramidal cells of our brain as long threads dangling from a cortical rooftop then one can comprehend that these threads are bundled through various stations as they descend down to the spinal cord and finally relay to the peripheral nerves that conduct the current that moves our muscles.

So there is a particular station in the brain called pons where this man's threads were suddenly affected two weeks back. What started as a slow dying of the neuronal cells that conduct current through the threads in their downward journey suddenly became an acute shut down (presumably as the myelin sheath covering those neurons and threads were affected). So was this a superaddded acute demyelination on top of a slowly progressive demyelination? Well at this point of time it looks like a secondary demyelination and the pattern seems extremely unlikely for primary demyelination (multiple sclerosis that is).

I had started him on a shot of steroids just in case it was primary inflammatory demyelination and responded like magic. His wife talked a lot today in his presence and I could notice his eye movements become uncomfortable at times particularly when she mentioned how he used to denigrate his brother in law for limping due to polio etc and added that perhaps he was just being punished short term for that and she was confident he would recover completely. I merely nodded in agreement although wished she had more evidence to support her confidence in the future.

December 8

I found him sleeping alone and unguarded (I had forgotten to mention that he had fallen off his bed yesterday). The resident informed me that he was doing well and also able to talk a little.

Wow! Sure enough he managed a 'doctor saab' rather well. His wife has been ecstatic and talks to him more often now and he seems to be happy from whatever I can make out through his expressive eyes.

I have continued the steroids for another two days just in case it is reducing some inflammation that may help to increase a bit more of his power

Case based reasoning through care pathways: a patient of toxic epidermal necrolysis

2008-12-06T01:10:00.000-08:00

Have been busy with some interesting patients these few days.

Although I am a unit incharge I prefer having complete charge of a few patients and tend to sometimes also work like a resident for them. Right now have this interesting patient with Toxic epidermal necrolysis who developed severe sepsis with acute tubular necrosis and non oliguric renal failure soon after admission to our ICU. Other than a posible cutaneous source of infection I found that a few attempts had been made to catheterize him with a foley's as per our ICU protocol (which I discovered to my horror advocates foley's in all patients which the residents tried to follow blindly).

His urine cultures also showed muti drug resistant E coli as a result and I had to start him on imipenem for the UTI along with linezolid for his presumed cutaneous infection.

This is one danger I believe of going by average information in protocols that is necessary for learning in the initial phases but again more subtle layers of information are needed to guide the execution of protocol based information. At the moment we need to develop this layer. One way would be: if health professionals share their experiences a form of experiential learning could be promoted. It is taking place but needs to be promoted on a wider basis. Most of the times our case based reasoning and subsequent sharing is very limited to our local friends and colleagues (but again can be remarkably augmented with the power of the net).

Again coming back to the same patient yesterday I noticed that his potassium had suddenly gone up to 8.9 mmol/L. I got an ECG done and found it normal and relaxed thinking it (his high potassium) couldn't be true especially since one report the day before was 3.4 mmol/L. However on closer look at the report of 3.4 mmol/L I realized it was someone else's report wrongly stuck on to this patient's file (doesn't speak well of our ICU staff including myself I know).

The patient's relative had obtained this wrong report from the lab without noticing the name, handed it over to the ICU sister who stuck it to the file without noticing and I had glanced through the day before without noticing the wrong name either. When we collected the correct report that was also raised (which proved that it was steadily rising and we rushed him for a hemodialysis for severe hyperkalemia).

Yesterday night I reflected on the appearance of severe hyperkalemia in this patient and that too without ECG changes and sure enough found some reliable literature in the net describing severe hyperkalemia without ECG changes and also realized that this person had been started on an enteral protein supplementation and it was possible that he was gaining a lot of potassium through that. I have changed his protein supplement powder to one that contains low potassium along with continued other drug management for his hyperkalemia.

The point of all this case discussion is to a) illustrate the simple, complex to chaotic evolution of care pathways (this was off course acute care) and b) reiterate the inadequacy of average text book information which may not cater to real time point of care requirements and c) emphasize the urgency of creating online experiential patient centered learning networks to facilitate better health care outcomes (and improve medical education in general which still hangs on to gleaning average information in intermittent boluses of lectures/discussions in weekly/monthly conferences etc). d) Obviously all of us need not go through all the experiences of others but only that which may be relevant to our point of care case based needs. There is a very interesting article on case based medical informatics that is being developed and needs our support in its further development at this link:http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=544898