Friday, July 31, 2015

Does Healthcare Need Technology or Policy or Passionate People or all of these?

At HackIndia 2015 in Bangalore which I'd attended during the last 7 hours of 18th July as part of the Mozilla team, I had met three young doctors roaming around from booth to booth. One of them, incidentally, is living in Mysore and I had a meetup with him (S) and his sister (V) at our favorite Kukralli yesterday.

We were brought together by the feeling that there are problems in health care and that there could be technological solutions to at least some of them.

Here's what's a very rough (rearranged, rephrased, corrected) transcript of some interesting parts of our long conversation around the lake.

A (me, final year): I was attending a world ORS day program today in my college. And that's when I thought that we should be having small apps/websites for smartphones, localized to local languages, to help people know about simple things like ORS.

S (intern, off duty): I was going through some health-tech startups. I think there should be applications that let patients know what to do in every situation - like in an emergency - they must know which hospital to go to, where the facilities are available to treat their kind of disease, and which doctor treats what. I saw this app which lets patients rate doctors according to how good they were during consultations.

V (OBG PG): I think rating doctors is a bad idea. It puts a lot of pressure on the doctors.

S: So you were talking about Mozilla Science Lab at HackIndia. What is Mozilla Science Lab? Is Mozilla turning into health?

A: Mozilla Science Lab is a Mozilla project that brings together researchers, librarians, publishers and developers so that they can publish their work online using the power of the Web and not fall prey to the money hungry publishers that exist today. In India, IITs and IISc are in various stages of such participation in the web.

S: There's this online portal where they publish their lectures - NPTEL.

A: Yeah, I've signed up for some 4 courses :D

S: You were also talking something about free software, open data in health care?

A: Yeah, let's begin with free software. I guess you're familiar with it, it's the concept that software should be free. There's this free software foundation which has supported the GNU project. They've defined the 4 essential freedoms for a software to be free. Those are:
  1. Freedom to use the software
  2. Freedom to modify the software (by modifying the source code)
  3. Freedom to redistribute the software
  4. Freedom to distribute the modifications of the software
These freedoms ensure that a software is actually useful for improving mankind. This is especially useful in government set-ups where the funding is already low, so we have to make maximum use of the money we have. And free software helps in that too. Also, when & if there are specific requirements for customization it is easier & cheaper with free software. And, these solutions can be used in other cities, states too without much cost in scaling.

Then there is open document formats. Health care can be expected to generate a lot of data in the near future. We should be worrying about what file format these data is saved in. We wouldn't want them to be saved in a proprietary format which might not be interoperable. That would make any kind of meta-analysis, or other collaborative use of such data difficult or impossible.

Then there's this government policy on open data. Instead of filing RTI for access to key data from various government departments, they're expected to proactively publish various data they collect into the public domain in accessible formats. This is a policy (that is not legally enforcable) and therefore is suffering from lack of attention from various departments. Yet there's this open data portal at which gives various kinds of useful data in formats that developers can directly tap to create apps or the like.

In fact, health departments should be very active in collecting and publishing such data because that can automatically lead to very good research. And our ways currently are leading to the destruction of data that is already collected - for example, as discovered through an RTI campaign by NS Prashanth and friends although our death certificates are detailed with income, caste, cause of death, etc, this data is not properly collected and aggregated and therefore many states and districts of India cannot say differential counts for the various causes of death in their area.

S: Hmm. On another note, I remember this teleradiology platform in which doctors can submit radiology images and then get opinion from a global network. And they are expanding that to other departments like pathology and medicine.

A: One of my friends was talking about this Canadian team called health-e-net which does something similar - a global network of doctors whom patients can get second opinions from without going far from their home.

S: Also at hackindia there was this 3D printing work by Fracktal Works. They were talking about developing cheap slit lamps for ophthalmology departments using 3D printing technology by reimagining the hardware design.

A: Yeah, medical equipments are so expensive that I think anyone who can become a medical equipment manufacturer can make so much money. I bought a peak flow meter for one of my studies. It costed ₹500 and it was just plastic, like a kid's toy. I guess they can make more money than even drug manufacturers because they don't even have to spend anything for R&D.

S: No, even drug manufacturing is cheap these days because of the various ways patent laws are. There's something called process patent as opposed to product patent. So, if a process is patented, new companies can modify a small step in that process and create a different process which is not patented. Thus they'll be able to manufacture drugs cheaply.

A: Ah, that reminds me of Gleevec and Novaris being turned down by the Supreme court upholding India's stance on how patents should be. Usually pharmaceutical companies, when the patent period on their chemical is over, makes a small change to their drug and gets a new patent. But Indian patent law prevents this. And when challenged in the court Supreme court considered the Indian situation of a lot of people needing drugs and granted in favor of the people. This is one of the things that enables generic drugs to flourish in India. And, Africa's HIV and other disease control relies in a large manner on India's generic drug industry.

And USA under lobbying from these Pharma companies are pressurizing India using international trade laws to prevent production of such generic drugs.

And Modi government is bringing in too many things. Like the DNA profiling bill with no bothering about issues surrounding it. Then making Aadhaar mandatory across everything even though Supreme Court had asked not to do so and even though there's no parliamentary sanction, the constitutional validity of which is now being fought over in Supreme Court. India is slowly being turned into a surveillance state.

S: But it's difficult to influence the government decisions, isn't it?

A: Yes, that's why we need to organzie. Organizations are powerful. For example, the savetheinternet campaign. When a few people came together, everything started falling in place and soon a large majority got convinced of the importance of net neutrality. Convince enough people and we can definitely influence government.

S: But convincing people is difficult when they don't have tangible benefits. With net neutrality they could directly see the problem. But that wouldn't be the case in other issues.

A: Yes, true. Like it is very difficult to make people understand that zero rating is the same thing as differential pricing. But that doesn't mean we should stop trying. After all, we ought to keep trying.

S: Coming back, we should have patient centric apps. Like Your D.O.S.T emotional support system. The current apps focus on doctors or hospitals, trying to make money. There are a lot of gaps in health care like doctors not getting enough time to speak to patient. There should be apps that help fill in this space with enough information for the patient.

V: Doctors don't have much time for patients at all. There is a lot of workload.

S: Yes, that's where these apps can help people. To fill up the gap.

A: Like medscape or mayoclinic? But probably with localized content?

S: The target group should be middle class mothers who may or may not be educated. Therefore it should be accessible. Yes, localized content, and even more pictorial content.

A: Like thai card!

V: These thai cards, many mothers don't even open it. There is excellent information about breastfeeding, immunization, etc in that. But they open it only when they are in the doctor's room for vaccination. There should be more of audio-visual information. In fact, there are a lot of videos created by many organizations. The challenge is in making the mothers watch these.

A: There should be apps that notifies mothers on mobile phones about immunization and all. Someone else can configure these for them.

V: There are such apps already. And big hospitals even have the facility of telephone reminders as special packs.

S: There could be call centres which give information out to patients. They can call these call centres through numbers like 112 and get help.

A: How would that be sustainable? Who'd pay these people?

V: You know, even doctors do not know many things. For example, when my friends became pregnant, they'd start googling for what to eat and so on.

A: In fact, the motto of my website is to improve learning, especially medicine. There are a lot of problems in medical education. We learn a lot but not in creative useful ways. I am still finding out ways to learn medicine. For example, I built a set of open questions in first chapter of ophthalmology textbook. These questions, just by going through them, makes the learner learn a lot of things.

And there should be more of open educational resources. The Web is still deficient in medical education resources. There are some videos put on youtube by universities, or professors. They are usually accompanied by copyright notices. This shouldn't be happening. We need remixable, open educational resources that are licensed in permissive ways.

And there sholud be creative ways of learning. It shouldn't just be text. We do have creative things like virtual body, etc coming. But these shouldn't be restricted to just demo apps. Medicine is so voluminous, there shouldn't be some interactive thing for every topic.

V: There's Dr Virkud. He records procedures, clinics, etc adds audio and uploads them on Youtube. But not all professors are cool like him.  For example, downloading slides from slideshare and using them for presentations is frowned upon by professors.

A: Exactly! I see surgeries from YouTube and that makes professors angry. But they can't be blamed for these. They should first be made aware of these alternate things - open learning, free software, etc. Once they realize how great they are, they can switch their mindset easily and this is probably a more solid strategy than students switching sides first.

V: Another thing, these techies research everything on the Internet, including diagnosis and treatment before coming to a doctor. But they're only like 5% of population. The rest and the vast majority of patients are looking for an emotional touch from hospitals. They care more about care than about technology or luxury.

Also, if I am not a good communicator, why should I be communicating with patients. Why should I repeat the same advice to every pregnant women? If I'm good at clinical things, I should be left to do that. Counseling, follow-up, treating, paper work, everything shouldn't be on doctors. Why can't we recruit more staff for giving patients advice, talking to them etc rather than spending on luxury? Medicine should be a team work.

S: But I think luxury is important. There are some people who can afford to pay for it. And this can bring in much needed money which can be used to cross-subsidize for poor patients.

V: Even if people can afford luxury, care is more important for most people. For example, there are RMPs in AP.  They have won patients' trust by being with them and giving emotional touch. And they bring the patients to the hospitals from where they get commissions. They are called kickbacks.

A: I guess these are all policy issues that need to be solved by bringing in policy changes. There probably are organizations working for health policy changes? I can remember save the doctor campaign (or the patient?). There should be more campaigns for all these issues.

S: The problem is that medical student corpus is largely apolitical. A lot of students aren't even aware of issues.

V: We had a small organization in AP. AP's medical education is a mess. Students don't even know how to take case. Our idea was to increase the feeling of social responsibility in students and make them more political. But in our meetings, they ended up asking questions about how to learn pathology, what to do after MBBS, etc. Even active members lost interest a while later because of peer pressure. How can we expect huge campaigns in such situations?

A: Hmm. Let's just keep in touch for now and motivate each other to keep going. We won't waste time in organizing.

And then we split ways. If you're interested in joining our small group, let me know.

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Friday, July 24, 2015

[jog-journal] Natural Selection in Dogs and FOSS Contributors

The usual pack of stray dogs were serenely looking at the morning walkers in front of oval ground - not moving unless the wheel of an oncoming car is directed at the ground under their rib cages. One of them suddenly started jumping with joy as it saw an old man and ran towards him. "Did you think I have biscuit?", said the old man petting it.

Why do dogs love humans so much? Maybe during our evolution, we humans gave environmental pressure for the selection of loyal dogs only. Maybe cats evolved on their own and maybe that's why they don't care about humans.

I think contributors to FOSS also undergo such a selection, unknowingly.

People who end up being contributors to FOSS are the people who ask questions and answer them themselves.
Most FOSS projects are written as dogfeed to solve the author's specific problem. It is only an after-thought that makes it a public library. Therefore, things would be done in ways that are less than intuitive. Configuration would be a mess, and the only documentation would be the few comments that're dispersed in the source code.

With projects being so beginner unfriendly, how do newcomers start contributing to FOSS? Or, what kind of newcomers start contributing? Only those who are genuinely curious, who're willing to learn by themselves, and who are more comfortable finding answers online than asking people questions.

This could explain why sometimes FOSS contributors are the worst people to take help from to get started with contributing to FOSS. They themselves are curious truth seekers who do not like third party answers. They are not acquainted with the process of handholding. And therefore, they appear hostile to the poor newbie who is still learning to ask questions the smart way.

Today morning I made a presentation for two girls in a college in Kerala whom I met at hackindia to get started with FOSS. I have been trying this pedagogy which puts the emphasis on acquiring those skills which help in auto-didactism.

And I ran so hard that I felt my eyes would pop out.

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