Patient’s Perspective (introduction to UDHC through their physician or social worker):
Mr X goes to Dr A to consult him about his 26 year old son who has recurrent bouts of unconsciousness since childhood. Dr A listens to him and examines his son in a busy OPD for 20 minutes (which is much more than what he usually offers to his average patient).
Mr X feels pleased with Dr A and looks forward to his next visit.
Once he returns home his son realizes he forgot to ask about the burning pain he has been experiencing recently in his lower limbs which has been infrequent. Dr A had patiently explained him about the headache he had been having and X was sure his medicines would relieve the headache. He would have to wait another week or two before he could manage to meet Dr A again in his weekly OPD (which would also have a long que).
There is no way he could call the busy doctor and talk to him directly.
Dr A knows that his patients need to be given more time to maintain an informational continuity which is so vital to improving their health outcomes. Dr A can at best afford to give his mobile number to patients on the condition that he cannot talk more than just a few words which may just suffice to say that he is available at the hospital or not (on the particular day they phone him). Even then this system is still cumbersome for him as he (or God forbid even his-wife!) may have to take his calls while he is driving.
The next time X visits Dr A he is pleasantly surprised to learn from him about a website http://care.udhc.co.in/ where he can pour in all his health queries which will reach him and to which he shall respond whenever he finds the time. He shall be assisted in this posting of his problems by a UDHC social worker who he trusts and knows well.
X goes home and relates all his problems on a day to day or weekly basis (in hand written letters which he hands over to the social worker who uploads it to the web site http://www.udhc.co.in/index.jsp (which automatically provides him a botanical user name to safeguard his identity and protect his privacy).
He is pleasantly surprised to find short sympathetic and useful messages from Dr A (although they come a few days after X's original hand written letter has been posted to the web site). These messages from Dr A are currently carried to him as printouts by the social worker but Mr X and his son have been taught to also login and access the web site ‘outputs’ and eventually they shall become self sufficient and not have to depend completely on the social worker.
X continues to post his son’s entire life problems and past events that he would like to share with Dr A over the next few weeks.
One day when the social worker shows him the web site, X is amazed to find that his son’s entire history (based on the inputs he had related slowly over the last few months) neatly structured into a story along with all the past reports and prescriptions he had shared in the form of a pictorial time line (see the other email attachments in word and other jpg images as reports and prescriptions). Along with these inputs (I e history, past reports and prescriptions) he had provided, the discussions/processing by the UDHC team of doctors and other health professionals and their decisions/outputs were all neatly arranged in the form of a page showing the entire input-process-outputs around his son’s case. For similar input-process-output records click on: http://www.udhc.co.in/HOW/how.jsp
Mr X tried to look for the discussions around the recent queries he had sent to Dr A regarding his
on’s problem and was told that those discussions were currently in a ‘hidden layer’ and would be released at a later date once the UDHC team came out with a stable solution to the current problem.
Mr X found that there were no identifying details, which he was told was per HIPAA guidelines: http://cphs.berkeley.edu/hipaa/hipaa18.html, although he was able to identify his son’s health records himself through his assigned ‘botanical user name’ and possibly his son or another close family member would be able to identify it too. The website seemed to be full of patients like him (with similar illnesses) although no one was identifiable.
They were all named after plants and the web site shows all the patients as thumbnails with the picture of the plants their names represent. Mr X was amused to find that his son’s botanical user-name, Buettneria Pilosa, which he could only pronounce with difficulty was a common creeper called ‘harjor’ in hindi and bangle, supposedly of medicinal value in fractures. http://www.mpbd.info/plants/buettneria-pilosa.php#.T_lstoHrhH0
Mr X makes it a point to plant one of these creepers at his home and take care of it as much as the UDHC team were taking care of his son and nurturing his ‘health-record.’ He felt this activity could perhaps even help him to remember that difficult to pronounce botanical user name. He wondered what would happen if all patients started taking care of their name-sake plants in their localities. Perhaps they needed to be careful not to just plant one particular plant as people may start trying to identify their health records by keeping track of which plant they particularly cared for (or perhaps he was just being paranoid).
He found it interesting that there were so many patients who had very similar problems as his son and they were all visible as thumbnails on the right hand side as soon as he opened the page showing his son’s record. He could also see many health professionals other than Dr A who were all identifiable by their photos and CVs and registered with this web site and whose thumbnails could be clicked upon to reveal their details along with all the connected thumbnails of the patients they were taking care of (which provided a good practical idea of their capacity and expertise other than their degrees).
In fact it sounded even more amazing that X's son’s story ( and other patients like him) was valuable learning material for medical students who participated in the further processing of these patient inputs toward optimal outputs to better their patient’s health outcomes. These 'clinical problem-solving' exercises by the medical students around these patients provided a formative assessment of their learning and helped to integrate medical education with practice.
Health professionals’ perspective: introduction to UDHC through word of mouth from social workers, colleagues, patients and web-browsing:
Dr B is a primary care physician in a rural location and sees a lot of challenging cases but has little learning feedback and support from colleagues. He is approached by the UDHC social worker one day to join their online network through the web site (or by patients who have already registered their health records with us) and encouraged to post/discuss his ‘cases’ to the web site where he is likely to get learning feedback from global health care professionals.
As soon as he posts his first case he finds a lot of similar cases showing up on the right hand side, a feature loosely termed web 2.0 he is told (some of them are from the British Medical Journal of Case Reports). He reads through those cases and finds a lot of useful answers to his questions. A week later he has further inputs on his case from a global network of physicians and medical students who have processed it toward an optimal solution with evidence based links for each decision they have suggested.
This considerably enriches Dr B’s knowledge around the particular clinical problem he had posted and the learning points from his case (along with the patient’s complete thumb-nailed -health record) gets added to his online portfolio. This not only ensures transparency in the decisions he takes around his patients but also offers him a fair support and recognition for his solo practice in a rural remote location.
Future Case scenarios (Mobile Web based interactions)
One day Mr X receives an SMS which says:
“Now receive a solution to all your physical, mental and social problems through a friend, philosopher and health-guide. Call toll free 5000002.”
He tries it out and as soon as he dials the number he hears an automated but pleasant voice informing him the terms and conditions of the ‘user driven healthcare,’ project.
Mobile based ‘informed consent’
He is informed that his voice will be heard and converted into text by a person working for the project who is unlikely to recognize/identify him (although this cannot be guaranteed). It will be further read by a panel of health professionals (including students in training) who are unlikely to recognize/identify the patient (although this cannot be guaranteed).
The students are going to make an initial assessment of the patient data so that it is improved, processed and forwarded to the panel of expert physicians for their feedback to the patient after finalization by the panel moderator (who is our expert Dr A) in consultation with other expert doctors in the ‘udhc’ team.
It is possible that the initial data the patient sends us may be inadequate, un-understandable and the patient may receive a few queries for clarification of his initial inputs from our panel.
The panel shall try to prepare an ‘electronic health record’ of the patient based on the informational input (both by the patient as well as the heath professional panel) and it is possible that a proper health record may take 5 to 10 phone calls from the patient over a period of days to weeks depending on the patient’s as well as the healthcare panel’s involvement.
If the patient agrees to share his health details after listening to this entire information he may consent to talk/SMS his complaints including his entire history (as much as he can remember/understand to the best of his capacity) by dialing another 1 digit number.
Patient X agrees to the voice recorded message and after dialing the one digit number, proceeds to talk about his headache as much as he can think of reporting.
In his first voice post he just mentions that he has been having headache for some time without mentioning anything else and leaves it at that.
He gets an initial response through a phone call in a pleasant recorded voice message that doesn’t sound automated but X feels as if his concerns have been specifically addressed although in a manner that requires him to answer a few more queries:
“Thanks Mr X for your query. We have received you input and we need to know a few more things about you like:
How long have you suffered from headaches? _____ weeks / months / years
Age at onset of headaches ________ years old
Approximate frequency: 1x/month or 1x/week or 2-4x/week or daily
Is your headache DAILY?
If daily, how long have you had daily headaches?
What do you do when you have a headache?
Can you continue doing what you were doing?
Do you have to take a medication for headache daily?
What do you take?
Does it work?
Does the headache come back?
How long have you been taking a daily medication for your headaches?
If not daily, how many days per week do you need to take medication for headache?
Have you noticed you have to take more of the same medication for it to take effect?
Have you kept a diary of your headaches?
Duration of headaches: Is it brief 30-60 minutes or 1-2 hrs or 3-6 hrs or 6-24 hrs or lasts days?
Side: both sides? right side? left side? changes sides?
Starting location: Forehead temple Top of Head Back of Head Ear Neck Face Eye?
Overall location: Eye Forehead Temple Top of Head, Back of head Face Ear Neck?
Quality: Pounding Boring Aching Tight band Shooting Throbbing Pressure?
Associated complaints: Flashing Lights Blurred Vision Dizziness Nausea Vomiting?
Have you experienced Blindness or One Sided Paralysis or dizziness, Numbness and Confusion?
How do you identify a severe headache starting? __________________________________
Are there warning signs before the headache pain starts? ____________________________
Lack of concentration?
These questions have been copied from a website http://www.thechildrenshospital.org
This has been copied by one of the UDHC network medical students who has typed ‘headache question’ into google and reached this site. This student uses a few questions from the available web resources and prepares an individualized feedback and sends it back to patient X after verifying it from the moderator who is a subject matter expert for that particular symptomatology.
Once X’s record is created in this manner and the subject matter expert (in this particular case Dr A) is convinced that this is ‘Migraine’ he asks X to visit him once in his clinic following which Dr A prescribes appropriate medicines through an E-prescription that is SMSed to X (from Dr A’s laptop) and ‘X’ keeps taking tablet Sibelium 10 mg everyday as a migraine suppressor and sometimes takes tablet Paracetamol 1gm for acute attacks. His initial attacks that were coming daily have improved after 3 months and come only once in a month now which also responds well to tablet paracetamol 1gm.
Bottom line and plus/minuses:
This is a proposal to integrate medical education with medical practice at the same time utilize the help and support of a vast population of online health enthusiasts.
Case scenario 2 has a wider reach among the population and can serve as a way to improve health professional practitioner’s patient inflow where the patient interacts asynchronously with the health guidance system before interacting face to face with the health professional.
There is requirement for human intermediaries who shall be trained in ‘online clinical problem solving’ and this in itself can function as a ‘knowledge process outsourcing’ KPO from the health professional practices. This activity can become an important employment generating avenue in future.