What's the Most Important Scientific Research?

Post-facto rationalization. That's something human beings are good at. If you decide to do research in a specific field, you'll come up with hundred ways to justify why that research is important, if not the most important.

I have been listening to Ravikant Kisana the last couple of days. In the podcast episode about Chandrayaan, RK calls Chandrayaan "completely useless". A summary of the episode is the description of the episode: "Buffalo wonders what the Chandrayaan benefits are, while pondering over the crumbling education system. We take a moment to acknowledge the hot mess that is Gen Z."

Palani Kumar makes a very similar point in the talk about manual scavenging in CMC Vellore. "We have too much technology, we have lots of technology, we went to moon also, the other side of the moon, we haven't saved anyone's life among manual scavenging people".

I'm part of Sarvatrika Arogya Andolana - Karnataka which makes the consistent demand that we need to put more money into primary healthcare and have free medicines in government hospitals and so on.

That's the context in which I come across this thread by Nandita Jayaraj about a couple of breakthrough researches. Before I finished reading the thread I tweeted about it: 

"Reading this thread made me think about how scientists in their lab coat are viewed in a very neutral or positive way by me whereas some of them are quite cunning and will do anything to get funded. 

There are so many scientists hyping up rare diseases because that is where they get money to play with genes."

I hate universities. A lot.

It is easy to argue with me by saying that universities are important and they create safe space for learning and that I can reject universities because of my privileges, and so on. But my intense hatred for universities has been validated by Ravikant Kisana in the Mind Your Buffalo podcast about institutional murders. The universities and the academia and the intellectual elite of this country are indeed a big part of the problem.

And that's where I come from. A position of intense hatred for scientists for their ignorance of how they're part of the problem.

And then these people who are held in high regard, in general, by journalists, people, and everyone, talk about research. From their pure and apolitical viewpoints. All I can hear when they open their mouth is "I want money. I am so smart. I do the most important work on Earth. Give me money."

What Ails India’s approach to Universal Health Coverage is Elite Solutions That Have No Basis in Reality

"Poorly maintained registers of doctors". That's the first five words of the article What ails India’s approach to Universal Health Coverage in Times of India by four people from Vidhi Centre for Lobbying Legal Policy. Let's talk about that after we look at universal health coverage.

"Universal health coverage (UHC) means that all people have access to the full range of quality health services they need, when and where they need them, without financial hardship. It covers the full continuum of essential health services, from health promotion to prevention, treatment, rehabilitation, and palliative care across the life course." ~WHO

That's quite an ambitious goal, isn't it? People having access to a full range of health services where they need them, that too without putting them in poverty.

The community medicine HoD of PGIMER, Chandigrah ends an article about achieving this as:

"In summary, to achieve the universal health coverage, major challenge in India is promotion of health, prevention of diseases, and provision of health care in a balanced manner, which will require innovative public policies, strategies, and programs in many sectors. Development and implementation of a multisectoral approach to achieve sustainable development goals is the need of the hour. Establishment of a Public Health Commission will go a long way in achieving coordination of various initiatives not only in the Ministry of Health and Family Welfare but also in many other relevant ministries/sectors. At least 5% of the gross domestic product should be earmarked for public health and a responsive governance mechanism as outlined above should be set up, to achieve universal health coverage by 2030 as envisaged in the United Nations sustainable development goals which are also endorsed by the Government of India." (emphasis mine)

Jan Swasthya Abhiyan, the Indian version of People's Health Movement, suggested in 2012 a national debate, while also saying that "providing entitlements must be accompanied by a clear framework for accountability and grievance redressal" and that "highest priority must be given to significant expansion and improvement of public health services". (emphasis, again, mine)

The Lancet lobbying group for "reimagining India's health system" in a theory of change also talks a bit about accountability.

"Finally, the fourth proposed intervention relates to creating accountability and trust in public and private health systems. Enhancing the scope of political engagement is a crucial step toward this, along with developing and disseminating performance reports on the functioning of various health systems. Communities should be able to conduct social audits of the health systems they use along principles of Community-Based Management (CBM). Establishing or strengthening the legal framework to protect and empower communities would also be essential, and a robust grievance redressal mechanism should penalize malpractice and negligence. However, care needs to be taken to ensure that caregivers are not unduly penalized."

One could indeed say that accountability and grievance redressal forms, or ought to form, a part of the path towards universal health coverage.

And that's indeed what Vidhi set out to study as per the three reports they released on Dec 5 all of which start with "Holding Healthcare Providers Accountable":

• Regulation of Healthcare Facilities
• Regulating Practitioners Through Medical Councils
• Consumer, Civil, and Criminal Mechanisms
  

And the next paragraph in the TOI article makes it abundantly clear that they're indeed talking about these: "Healthcare providers in India are held accountable by the state through four primary mechanisms — courts, consumer fora, medical councils that regulate healthcare professionals, and regulators of clinical establishments"

This is where I begin to disagree (and this is probably where my shock comes from in reading that "poorly maintained registers of doctors" ails the approach to UHC).

When the rest of the world is talking about holding healthcare providers accountable, they're talking about the healthcare providers being held accountable by people, society, or basically healthcare consumers. For example, in the Lancet group's article above, they talk about social audits. But when Vidhi is studying this, they put on an irrelevant criteria — "by the state".

If they meant state in a larger scope wherein state includes citizens (people, society, and healthcare consumers), then they've gravely erred on the "four primary mechanisms" through which healthcare providers are held accountable in India.

When one glances through the report this becomes obvious as they have very nicely documented the numerous reasons why all of these fail to hold healthcare providers accountable. Here're some statements from their three report landing pages:

• "the apparent reluctance of courts to convict healthcare providers of medical negligence under criminal law raises questions as to the role of this mechanism as a tool of accountability in the healthcare space"
• "However, SMCs fail to perform their adjudicatory functions effectively. Very few complaints are instituted, and even when instituted, the most common disciplinary actions are warnings or mandating attendance of continuing medical education (CME), with very few instances of an RMP being removed from the register either temporarily or permanently."
• "Enforcement has continued to be unsatisfactory in various states that have adopted it. The Act also has various gaps, like the absence of grievance redressal systems, that prevent it from being an effective and patient-centric healthcare regulation. "

Yet they have persisted in their belief that these are the "primary mechanisms" of holding healthcare providers accountable.

If their argument is that they're only researching how the "state" can hold providers accountable, then there is a case to be made that "holding accountable" is not a function of the "state" — which in many cases is the "provider". The state itself has to be held accountable (at least in the case of public healthcare system). "Holding accountable" is almost always the function of consumers and citizens.

If their argument is indeed that these are the main mechanisms, and they're wrong, then what are the real primary mechanisms of holding healthcare providers accountable?

I have written about this before where I talk about avoiding legal system altogether. I write in that that we could focus on activism, politics, journalism, and research.

But what are the "primary" mechanisms?

Let's put ourselves in the shoes of a healthcare provider.

An independent private healthcare provider running a clinic. What they're the most afraid of is a patient dying and people thrashing their clinic. The mechanism of accountability here is direct physical action.

An HCP inside a private hospital. They're most worried about the person who pays them salary. And that person is most worried about the reputation of the hospital being ruined by reports of inadequate care there. The mechanism of accountability here is social messaging.

An HCP inside a public hospital. They're mostly not worried about anything. But they are indeed answerable to their medical superintendent and district level officers (like the DHO) who have the power to transfer them. And these higher officials are most worried about politicians (minister, MLA, etc). And they're the most worried about their political image being tampered by journalists writing up a series of negligent care in government hospitals.

Through this exercise in empathy what I'm trying to say is that the biggest (primary) mechanism of holding healthcare providers accountable is "social pressure".

But Vidhi is a group of lawyers. The four authors of the TOI article are lawyers. And all they can see this is as a problem of law. They can look at it only in terms of clinical establishments act, and tort law, and NMC act, and so on.

That's absolutely fine. It is very much required to have well functioning regulatory mechanisms through law.

The problem is when they claim they know more than what they know. You don't reach Universal Health Coverage by focusing on law alone. And I don't even want to go into how "poorly maintained register of doctors" has relatively little to do with holding healthcare providers accountable through law.

But all I want to say is that Vidhi should stop writing TOI articles that help Nandan Nilekani build data maximization projects like the NDHM.

Repeated Names in NSQ Manufacturing

 There's a 2014-2016 survey of drugs.

That's followed up with smaller surveys by CDSCO.

We will compare with March 2023 report.

Let's look for repeated offenders.

Skymap Pharmaceuticals Uttarakhand. In the old survey they had 14.04% samples NSQ. In March 2023, they're NSQ again in 2 samples. (We do not know how many samples from Skymap were tested, so we cannot reproduce a percentage).

There are two samples without manufacturer specified (of Ritonavir and Rivastigmine).

There is Karnataka Antibiotics & Pharmaceuticals Limited coming up 4 times within the March list.

Ridley Life Sciences Delhi shows up twice. They were in the 2014-16 list for 11/52 samples (21%) being NSQ.

Neon Laboratories Maharashtra shows up once. They were in the 2014-16 list for 2/42 samples, that is 4% being NSQ.

Preet Remedies Himachal shows up once. They were in the 2014-16 list for 2/47 that is 4% being NSQ.

Shiva Biogenetic Himachal shows up once. They were in the 2014-16 list for 25/62 that is 40% samples being NSQ.

Let's take the October 2022 list to see if we can find more common names.

Ridley is there once in this list too.

Zee Laboratories of Himachal Pradesh makes one entry. Zee has an entry in the 2014-2016 list for having 40/222 (18%) samples NSQ.

Mercury Laboratories Gujarat makes it to the list too with one entry. Mercury Gujarat was the topper in 2014-2016 list 

Shiva Biogenetic Himachal Pradesh is back here too.

Pure & Cure Healthcare Uttarakhand makes one entry. They were in the 2014-16 list with the misname Pure & Care for 3/38 samples (7.8%) NSQ.

 

This is emerging to be a good tech project to track each pharma and their NSQ detections. Maybe for another day. 

One challenge is that we do not know the denominator on the smaller surveys.

Engaging with the System - A Visit to IISc

When Prasanna heard John and I were leaving Hari's farewell party to join Ravi in the trip to Indian Institute of Science, PS let out a characteristic sigh and said "all the best". It probably comes from experience of how incorrigible people in elite institutions are when it comes to thinking about broader determinants of health and communities.

After all, I wasn't wearing my usual grey short pants either. I had to dress for the "vibe" of the place. I was wearing a long pant and a full sleeve shirt. Even Ravi was wearing a shoe. And when we reached the place, we were welcomed by Dr H Paramesh who was wearing a suit. The only person who was under-dressed (relative to their usual) was Pruthvish who was at the venue too, but didn't wear a suit today.

Places and events like these have a way of making you uncomfortable in your skin. There's a level of "sophistication" that's expected in the way you carry yourself. Is it written down anywhere? No. It's just the air. You won't be able to breathe if you're not walking and talking the way everyone around you is.

Gender non-conforming people have stated how in public places, it is sometimes overwhelming for them when everyone is looking at them like "they don't belong here". Trans women feel unwelcome in healthcare clinics for similar reasons. 

Perhaps what I feel is a bit like what they feel.

Would you expect a trans woman to speak about "Health for All" at Indian Institute of Science? Or a garment factory worker? Or a manual scavenger?

I wouldn't. Because they would always be under-dressed. No matter how expensive their clothing is.

It affects the content of the discussion too. There are certain "sophisticated" ways you would give a talk in a place like IISc. You can talk about things like "equity". Even "gender equality" is fashionable. But words like "caste", "transgender", etc would not pass the vibe check.

That's the trouble I frequently have when "engaging with the system". The system has certain methods. And certain taboos. It is often the taboos that are at the heart of the problem. 

It is only if we talk about the terrible lived experience of the caste oppressed, or the gender minorities, or the poor that we can start to expose how unjustifiable the position of scientists in ivory towers are. When lived experience of discrimination and oppression and ill-health is put on the table, people will have only two options - either turn their faces away and ignore it, or accept how they are part of the problem. They can no longer sleep comfortably saying "we're also doing our bit". Because nobody is doing their bit as long as people are suffering.

And those who are suffering will never be invited to talk to the system.

The responsibility then falls up on those who are invited. To give a second hand account from their experience of the lived experience of suffering. To amplify the voices of the marginalized. To pass the recording, when they can't pass the microphone.

But that won't pass the vibe check.

A Community for Online Action in Community Health

Today Guru, John, Swamy, Ravi, and I met in the Health for All - Learning Center workspace at SOCHARA. We discussed an action plan for the next 3 years (with a focus on 2023-24) for the Digital Archives Platform unit at SOCHARA. The archives becomes a core activity for a community of community health activist-scholars and activist-professionals to do study, reflection, action, and experiment online towards "Health for All". 

The larger hypothesis is that when we flood the internet with content related to community health, the second order and third order effects of that will lead to a massive movement by narrative building and discourse shaping towards community health.

The DAP at SOCHARA is going to focus on SOCHARA's own reports, publications, presentations, videos, audios, etc for the first year (along with medico friend circle's archive). This comprises items from Appendix A of Silver Jubilee Museum Archive Project that happened between 2016 and 2022. The year after that we will focus on Appendix B (which includes networks and organizations SOCHARA is connected to) and Appendix C (which has special focus themes and topics). What to do in year 3 will emerge by the end of 2023.

While this is just the Digital Archives part of it (which many organizations are now entering - NCBS, AICTU, APU, WIPRO, etc), there are many many other activities that this community can do:

• Communications for community health with things like podcasts, memes, reels, and so on need to be built.
• Stories of people and organizations need to be captured on wiki.sochara.org (which communityhealth.in now redirects to).
  
• A public discussion forum needs to be created (either as part of something like Azad Maidan or independently).
• Content of high quality and relevance like mfc bulletins and health taskforce report need to be modernized by conversion into web pages with hyperlinks.
  
• Effective sharing of resources with other similar efforts in the network has to be accomplished.
• The team at SOCHARA itself has to become comfortable with and active on these public documentation efforts.
• ... (your idea here)
  

There's plenty of interesting work that lies ahead. This month we will be focusing on the website and SOCHARA's evolution story, physical clean up of the unused sections of the library, and getting "systems of sustainability" available for use of the team.

The workspace in HFA-LC, after the meeting. I forgot to take a photo while the meeting was happening. The empty chairs symbolize the space for anyone reading this to come in and be part of the community.