Video of the talk Telemedicine Policies and Standards in India

Dr. Gowri Kulkarni addresses doctor attitudes and components of practicing telemedicine, Jasmine George of Hidden Pockets speaks of patient experiences, experiences with seeking sexual and reproductive health online and access to safe abortions using telemedicine.

Everything I said is reproduced and augmented in an earlier post on telemedicine policies in India. Here I will point to the discussion by Dr. Gowri (GK) and Jasmine George (JG)

1:50 — History of telemedicine in India ( GK)

5:40 — How telemedicine became so prominent due to Covid and how reproductive health issues were handled. Provider and patient perspective — (JG)

12:00 — How have doctors responded to telemedicine? Fears, expectations etc. (GK)

38:00 — How does one deal with the nuances of consent via telemedicine? (GK, JG, AP) This part is very important, and the discussion bring out a lot of the complexities involved in informed consent and technology, and the national health stack.

56:24 — Negotiating privacy and safety in crisis helplines and abortion and reproductive health (JG)

58:00 — Is this the future? What can Telemedicine do and not do? –(GK, JG)

1:07:00 — Unethical practices in clinical medicine now, why they exist and the future — (GK)

1:12:00 — The changing nature of the social contract with doctors, and the need for change in practices — (JG) A vital point here being made by Jasmine, she speaks of how instead of the tort approach, we need positive laws keeping stakeholders in consultation.

1:15:20 — Challenges in scaling telemedicine — (GK)

 

A guide to telemedicine policies and problems in India

This post originally appeared on Karana’s blog , this iteration has a TOC, more references and has been edited to make things clearer. Many of these updates especially the footnotes were due to Dr. Verghese Thomas‘s comments.

Introduction

This post builds on the questions that were raised in the talk: Telemedicine Policies and Standards in India , adds more information, references, a detailed prescription and creates a reference – friendly structure.

The first part is descriptive. I will attempt to provide a clear understanding of the different aspects of telemedicine as it stands in India with regards to policy and infrastructure. In the second part I will focus on prescription, or describing what I think are the key issues and what I (and others) think should be done about them.

Part I – The description

Current State of regulations on telemedicine in India

Telemedicine is not new in India; for about 20 years, various governmental and non-governmental organizations have been involved in various kinds of telemedicine projects in India. The ISRO currently maintains a network of 130 hospitals in India that are connected for telemedicine [1].

Most of these are doctor to doctor consults, in which a doctor in a rural or secondary care setup discusses the care and treatment of a patient with a specialist based in one of the nodal centers, like AIIMS, or other central or state institutes. We do not have clear information about how many patients are treated overall, and what kind of outcomes are being measured and if there are any specific interventions being conducted in these centers. Mishra (2008, 2009) DeSouza (2014) and others have delved into this and more in detail.

Despite this history, there has been very little in terms of legal or official documentation about what services count as telemedicine, what kind of services can be provided via telemedicine (and what cannot), what the liability structure for these consultations are, and what clinical guidelines or standards apply. While anecdotal information about health worker adoption of these technologies abound there are not a lot of published reports from academia.

In the last 5 years or so, with the boom in the number of smartphone users [2] , a large number of mobile health providors have been doing telemdicine in India. The legal status of these is discussed frequently in media, Quora etc. But not a lot of clarity exists. As recently as 2019, the Karnataka medical counil notified all doctors to stop doing telemedicine, and opined that telemedicine consultations are illegal. [3]

During this time startups based in Bangalore sent details of the legal provisions and clinical audits and security practices to the KMC, which silently gave a go ahead, without really going public about it. I know this because I was involved in the making of these responses.

I have been working in health technology in India since 2010 and have been focusing on mobile-based telemedicine since 2016. Over the years I have collaborated with legal and other organizations to understand and frame the legal and ethical issues in telemedicine and have been involved some of the policy conversations around telemedicine in India. This post is a result of those experiences.[4]

The legislative or official backing of telemedicine providers is framed like this by most private providers:

  1. The The Indian Medical Council Act, 1956 specifies who can practice medicine in India (registered medical practitioner), and what a legally valid prescription is.

This indicates that as long as any consultation is done by a registered medical practitioner and they provide a prescription following this standard it is a legal consultation.

  1. Pharmacy Council of India which regulates training and registration of pharmacists and pharmacies in India, in its Pharmacy Practice Regulations, 2015 No. 14-148/ 2012- PCI defines that prescriptions can be physical or electronic.
  2. The IT act of 2000 and its amendments(chapters 2, 5 and 7) describe how to digitally sign an electronic health record, and make it clear that this makes it a legally valid record.

Put these together and we have the broad framework under which you can have an online consultation.

In March 2020, The Medical Council of India published a guideline for telemedicine in India, which provides a broad practice framework. The board of governers has since accepted this guideline and has decided to provide statutory basis for them under Professional conduct, Etiquette and Ethics regulations. MCI-211(2)/2019 (Ethics)/201858 [PDF]

While this is far from comprehensive, it provides some way in which a doctor can be held liable for online malpractice, and provides clearer legitimacy to online consultations.

EHRs, regulations and their relationship with telemedicine

Since telemedicine creates and stores medical information about patients, all telemedicine providers who store data digitally ned to adhere to EHR standards. The definition of what and EMR is and what EHRs are are detailed in the MoHFW – released EHR standard 2016, and it is clear that any agency that stores patient information must comply with these standards.

Besides this, in 2018, the ministry has also set up a National Resource Centre for EHR Standard (NRCeS) to ” augment facilitation for adoption of the notified EHR Standards in technical association with Centre for Development of Advanced Computing (C-DAC), Pune for providing assistance in developing, implementing and using EHR standards effectively in healthcare Information Technology (IT) applications”. This organization has been working with vendors and creators of EHRs in providing training etc.

The EHR standard 2016, lays down the best practices for storage, retrieval, and communication of health information. It follows international standards in EHR design and explains the complexity of EHRs very well. The enforcebility of these standards is still unclear, as are penalties, if any that exist for not complying. There doesn’t seem to be any national certifying methodology or agency for EHRs.

Privacy and security of health data in India

Health data In India is owned by the patient, at least in the broad sense.

At present, the IT act of 2000 and its amendments are what form the legal basis of the right to privacy and security of personal information. This bill covers health information but is not very exhaustive.

The MoHFW had proposed a Digital Information Security in Healthcare (DISHA) act [PDF] for comprehensively covering health related data, but this bill has been replaced by and subsumed into another bill tabled by the ministry of Electronics and Information Technology: The personal data protection (PDP) bill. This has been tabled in lok sabha and has been sent to a standing committee for discussion.

The (PDP) bill provides for protection of personal data of individuals, and establishes a Data Protection Authority for the same. It defines what personal health information is and lays out penalties for breaches etc. But it also makes it clear that the government has ultimate power in making decisions about health data and lays out a large set of non-exhaustive circumstances or reasons for breaching consent. It also states that the government may ask “data fiduciaries to provide it with any: (i) non-personal data and (ii) anonymized personal data (where it is not possible to identify data principal) for better targeting of services.”

The law doesn’t speak of the right of a patient to be forgotten, and the entire system assumes the national health stack and which in turn is built on top of aadhar, and so anonymity doesn’t seem to be an option, and it very much wants every patient to be identified.

The current law [IT act] does not address the matter of consent very well. As a result of this, consent for using reusing, researching and doing what ever needs to be done is taken by most health apps upfront as part of the EULA . Chances are, if you clicked on one of those I Agree buttons, you’ve provided a blanket agreement for the use of your data. There is some distinction made about anonymizing and de-identifying data.

Anonymized data is data that has been stripped of all information that could be considered as personally identifiable. De-identified removes identifying information in a reversible manner, eg. replacing names with a unique code or number shown to some people, but separately maintaining a way to look up the name given the number or code.

The current legal framework gives software providers and other health providers almost unfettered access to data as long as it is anonymized, and doesn’t specify how often and in what situations consent must be taken.

In the PDP, consent is deliberated on in some detail and an XML standard for logging consent has been proposed.

India’s digital health infrastructure

Before going further into what the government is doing for the creation of digital health infrastructure, let me state that

  1. The public health system in India is extremely good in some places and extremely bad in some places. And the difference between these places is not technology, it’s the way they solved the people problems. You cannot solve people problems with technology. Some examples of the people problems are caste, favoritism, and the informational, financial and power asymmetry between people who deliver healthcare and the people who receive it.
  2. If we don’t address these structural issues first, and this is not something you can do in parallel, and you throw tech at it, there is plenty of evidence from high quality studies around the world, that this worsens the problem.
  3. The current health system is extremely bloated in administrative and “overhead” areas and lacks resources in the “delivery” areas. This administrative bloat needs to be addressed and pruned. It cannot efficiently deliver what needs to be delivered, and I have felt many times that maybe we need to delete it all and restart.

The national health stack.

In 2018-19 the govt unveiled the Ayushman bharat program which does two things,

  1. Sets up 1.5 lakh primary healthcare centers (largely as public-private partnerships).
  2. An insurance scheme – which covers ~10 Cr families at 5 lakh per family.
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In order to deliver this (and only this), the govt set up an independent body called the National health authority. The PMJAY website is very clear about its scope.

The Niti Ayog was entrusted with figuring out the tech for this – how to get health insurance to those who need it, and came up with the national health stack.[PDF] in July 2018.

In this proposal the NITI ayog starts off by saying,

In this document, we present the idea of a national health Stack (nhS)—a digital infrastructure built with a deep understanding of the incentive structures prevalent in the Indian healthcare ecosystem. The NHS, a set of building blocks which are essential in implementing digital health initiatives, would be “built as a common public good” to avoid duplication of efforts and successfully achieve convergence. Also, the NHS will be “built for nhpS but designed beyond nhpS” as an enabler for rapid development of diverse solutions in health and their adoption by states

Its Components:

A. National health electronic registries: to create a single source of truth for and manage master health data of the nation; (Suddenly we are not talking about 50 crore people.)

B. A coverage and claims platform with fraud detection;

C A Federated personal health records (PHR) Framework:

D. A national health analytics platform:

E. Other things including, Digital Health ID, Health Data Dictionaries and Supply Chain Management for Drugs, payment gateways etc shared across all health programs.

With all of this built on top of the aadhaar

In about 40 pages of the proposal it goes from being an insurance providing system for 50 crore people, to the central and unified system for accessing health for everyone in the country.

To implement this National health stack the MoHFW proposed the national digital health blueprint in April 2019

Since then, an organization called iSPIRT Foundation, which is a volunteer run non-profit, funded by some of the biggest names in the tech industry are currently going ahead and building the national health stack. In fact parts of it are already ready and the code’s on github.

From what I could gather from their website and materials provided by them, the organization takes a systems thinking approach and the volunteers clearly have experience in building tech infrastructure. They are very open about their work. It seems like the foundation has brought together smart minds and industry to work on creating an ecosystem for building digital products and business in India, including the NHS.

For the last few weeks they have been holding an open house discussing the NHS, parts of which have already been made! and a certification of some kind is in the works.

Source: Open House Discussion on PHR and Doctor Registry #2 [Youtube]

They are working with private industry very well, and I have reached out to health startups who mention that they are informed about the work being done and are generally happy about the quality of the discussions, although how far recommendations from policy, disability and patient rights organizations etc. are considered is unclear.

The Community

Before I jump into the prescriptive part of this post, I think it’s important to discuss some of the initiatives, communities and organizations that are involved in the discussion around telemedicine and digital health infrastructure of the country. This list is in no particular order and is not exhaustive. If you are an organization or community interested in this, please comment.

Jan Swasthya Abhiyan (JSA) The JSA forms the Indian regional circle of the global People’s Health Movement (PHM). They do a lot of advocacy around universal health coverage and gender and patient rights and commonly comment on health related legislation in India.

Digital health india, an NGO. No policy briefs so far, but a corona CDSS was made publicly available by them. They, in collaboration with the NRCeS have created and maintain a Telemedicine provider registry, which is a great project. It also conducts evaluations of telemedicine providers and the research is available on their website. Run by health and social work professionals.

Digital Health Providers Association, consisting of a few healthcare startups, has recently come up with a policy brief for telemedicine. Run by Health technology professionals.

Telemedicine society of india – The oldest Indian organization. Involved in conferences and research. Run by School of Telemedicine and Bio-Medical Informatics at Sanjay Gandhi Post Graduate Institute of Medical Sciences. No policy briefs, but many papers have been produced by them and they were early advocates of telemedicine. Run by doctors and health informatics professionals.

Software Freedom Law Center (SFLC) does a lot of advocacy, PILs, and other policy related work in the privacy, information security and related areas. Their responses to NDBP and others are well researched. Run by FOSS (Free/Libre and open source software) practitioners and has some academic background.

Center for internet and society (CIS) a non-profit organization that undertakes interdisciplinary research on internet and digital technologies from policy and academic perspectives. has produced some of the finest policy work when it comes to technology and digital living in india. Run by policy specialists and a research team.

Kaarana – organized the aforementioned talk and is involved with discussions around privacy, aadhar etc.

You should note that I have been unable to find academic departments or chairs in Indian universities who have responded to or been involved from the public’s side in all these discussions. I think there is a grave paucity of policy makers engaging in health technology in India.

Part II: The prescription

In this section I will list problems and my recommendations referencing all the elements discussed in the description section.

MCI Telemedicine Practice Guidelines

Overall, while the guideline was much needed and came at the right time, the guidelines seem hurried.

Issues

  1. They fail to take in account the telemedicine that’s already happening in India. So it’s more a guide for someone new to this.
  2. There are no background papers or surveys of existing practices in telemedicine in India as the foundation of this document.
  3. It also tries to do too many things, and offers different levels of detail in different areas. For example, it mentions a list of medication that may or may not be used online. And it states that violating this directive can be construed as malpractice. This sort of an approach, where you dictate what medications are OK and what are not are not in line with research from other countries or with the dynamic nature of medicine. The guideline and the MCI should instead discuss safe and unsafe prescription habits. It already had to amend the list of drugs, because the first version made it illegal to prescribe psychiatric medication in India. Keep in mind that lack of access to psychiatry and mental healthcare are among the top five reasons people use telemedicine!
  4. The MCI is also geared to come up with practice guidelines on how to manage different issues online, which I think is not a good idea, because the various medical academic societies need to think this through and come up with guidelines, and for this a fair bit of background research is needed.

There is a great need for a collaborative approach. There needs to be at least a few studies into what kind of things are already being treated online, what kind of people are accessing health this way, and understand the system before trying to govern it.

What direction is needed from MCI:

  1. Create a collaboration with industry and academia in understanding how telemedicine can be delivered safely and efficaciously.
  2. Identify research lacunae in clinical practice and policy and ethics of online consultations
  3. Propose and study safe online prescription habits
  4. Delineate what kind of training someone who practices telemedicine needs
  5. Guide on how EHR and telemedicine providers can get ethical oversight from medical institutions.

In summary, instead of focusing on getting lost in the details , it should focus on creating a framework that is non restrictive and safe, and allows doctors to practice fearlessly, and promotes collaboration and research that leads to better guidelines and practice.

EHR standards

  1. It has too many standards that apply, some 20 different standards of ISO referenced, all of which are paid. This sets the entry cost too high for smaller organizations. [5]
  2. The recommendations for clinical terms- The snomed CT does not have Indian language versions of the or any localization. The point of a clinical terminology dictionary is to understand and communicate local health problems with the greater community. Use of SNOMED CT will causes loss of information, and preserving local languages of health is very important.
  3. Also, while the government has bought access to SNOMED CT, this only applies to Government agencies, private players would have to pay thousands of dollars yearly to get access.
  4. While it’s a very comprehensive document, it makes sets the bar too high for people making EHRs. I’m not saying we should be lax, I’m saying we need to be practicaal.
  5. The other standards it recommends like the LOINC, have been mentioned in a way that hospitals with older machines and smaller labs would not be able to comply.

Recommendations:

  1. Recommend free and open source standards where ever possible.
  2. Recommend using standards that have some benefit. So far, using SNOMED terminology is beneficial to a very small subset of EHR providers.
  3. Create or open the creation of India specific clinical terminologies, personal health information standards etc.
  4. Understand that with the advent of modern algorithmic computing, the need for each entity to follow strict standards for terminology is going away. As long as locally accepted standard terminology is being used, interoperability can be established using other means.

Privacy and health data.

  1. The blanket permission given to the government to use patient data without consent is in direct opposition to many learned commissions and committees constituted in this area, the supreme court rules on related issues and research into the importance of privacy in healthcare. [6]
  2. There exist apps out there that do not mention clinical research as part of the EULAs but go head and do it anyway.
  3. In part, this is because of the lack of ethical literacy among technologists. To be clear, I am not saying us technologists are an unethical lot, but it seems like ethics is not part of the CS curriculum, and tech till recently maintained that they were just tool builders and didn’t have to worry about the effects.
  4. Over the years, my experience in bringing up ethics in software circles has not be wonderful, mainly because there just isn’t enough literacy about the issue and because ethics are often confused with moral policing.
  5. We need to keep in mind that beyond the lack of literacy, here is plenty of current data and research into the harms that are being caused by unethical practices in technology or 7ignoring of ethics in technology. [7]
  6. While there has been some work in the area of teaching software professionals in making and using EHRs, there has been no talk of ethics in this policy space.
  7. Neither the agencies dealing with EHRs nor any documents from Niti Ayog, which leads the policy making, have any mention of the need for ethical literacy for software makers or mention ethical oversight of digital health providers.
  8. With the advent of AI, there is now a lot of evidence that just removing someone’s name and such details doesn’t actually anonymize data. Further steps need to be taken and this is an area that will keep needing to catch up with various misuses of data and so needs a flexible framework.

Recommendations:

  1. Data ethics literacy for health technologists. This needs to be part of the computer science curriculum, and periodically discussed and dealt with in organizations.
  2. Ethical oversight of health data providers. Academia and ethical experts in the country need to make it easy for digital health providers to access their expertise and financially viable to receive ethical oversight for research and development.
  3. We clearly need a LOT more focus on individual rights and the evidence for this in the healthcare context, and our laws need to be informed of the advances in this area. The current law and the proposed Data protection law fall short in reassuring people that their interests are being taken care of.

The national health stack and the NDHB

  1. One of the foundational assumptions of this stack is that the identity of the individual MUST be verified via aadhaar, or other methods.
  2. The issues with the national digital health blueprint whose problems have been explored in detail in a talk at Kaarana and there are comments and reports on it available.
  3. Comments by JSA, SFLI and CIS in particular stand out, and not with any coordination, they all point out the problems of consent, inclusion, and privacy.

From JSA – comments, PDF linked here

It could work- but more often than not, as global experience shows it does not- though in the process it could provide many lucrative contracts to India’s IT majors. In a worst case scenario it could disrupt not only an ongoing incremental process of IT development that is ongoing, but also the organization of healthcare services at the district and sub-district levels- especially when new systems are being proposed as replacing all others. An approach where the biggest and newest software seeks to undermine or stop all others, even if they may be working well in their local settings is one reason- why some of these bold new ‘disruptive” innovations- can be literally disruptive of progress being made, without offering any alternative.

We therefore would call for an incremental approach that builds on the current situation and processes, with center providing technical support and guidance to multiple decentralized efforts. We set out some of the main features of such an alternative below

The main purpose of IT systems in the states and districts should be for decentralized management at that level.The center should limit itself to data that is actionable for the center-it need not be able to “see” every facility, let alone every individual

A central repository is neither required nor manageable nor desirable.Though these repositories are justified in the name of universal coverage and reaching the poor, it will like most such systems provide little in the way of entitlements to the poor. However in the hands of a powerful state, it can be used to encroach on privacy harms elect individuals who are perceived as hospital by the government of the day. Such large data banks have also commercial value and there is much data mercantilism-on which the entire document is silent. This silence is of great concern.There needs to be safeguards and guarantees against this.

From SFLC

The Government of India has formed multiple committees and held multiple rounds of consultations to decide upon the issue of Privacy and Data Protection. Justice A.P. Shah Committee formed by the Planning Commission released a report on privacy in 2012.[1] In its report, nine National Privacy Principles were recommended.[2] In 2017, a nine-judge bench of the Supreme Court of India unanimously recognized the existence of a fundamental right to privacy under Article 21 of the Constitution of India

The pressing concern with the National Digital Health Blueprint (NDHB) report is that it suggests a framework that severely infringes upon the fundamental right to privacy. These concerns are heightened in the absence of a comprehensive data protection law. The report also ignores a series of advancements on privacy and data protection that have taken place over the years. It does not adhere to the privacy principles recommended by Group of Experts on Privacy (Justice A.P. Shah Committee) and the more recent, Justice B.N. Srikrishna Committee report whose recommendations on data protection form the core foundation for the draft Personal Data Protection Bill, 2018.

A detailed analysis of the National health stack has been done by Smriti Mudgal Sharma

In conclusion it may be said that NHS is a great move towards monitoring and evaluation of the implementation of ABY. However, technology can at best streamline processes and help create a digital backbone for execution of public health programmes; it alone cannot solve the greater public health challenges. This endeavour needs to be complemented by strengthening the implementation capacity of states. The real need of the hour is to fix accountability of the medical professionals, improve standards of care, ensure transparency, and procure high-quality data without compromising privacy and choice of beneficiaries.

The CIS-India comments

We also note that the nature of data which would be subject to processing in the proposed digital framework pre-supposes a robust data protection regime in India, one which is currently absent. Accordingly, we also urge ceasing the implementation of the framework until the Personal Data Protection Bill is passed by the parliament. The NDHB also assumes that access and delivery of the services promised under the ecosystem would be facilitated by the prospect of ‘near universal coverage’ of smart phones across India. However, this ‘mobile first’ premise rests on an assumption of widespread digital literacy, which is simply absent when one considers the social realities of the country.

Section 3.5 of the NDHB states the standards that will be in place for privacy and security, which includes provisions that are to be included in the operational aspects. This includes a provision on immutability, which states that a record cannot be deleted without following due process. We recommend that such due process takes into consideration the right of the data principal to delete specific entries or the entire set of records containing their personal information. We had also made this recommendation for the Digital Information Security in Healthcare Act 2018 49 , and reiterate it for the NDHB.

Nayantara Narayanan also provides a great write up in scroll on this issue

To summarize the recommendations:

  1. We need digital infrastructure but this (NHS and NDHB) do not address systemic inequalities which are the root cause of the problems this system is trying to solve. This is foolhardy and suspiciously represents and solves the problems of the industry and not the patient.
  2. We need good data protection provisions in our laws, and without that, there is great deal of misuse that can happen due to this stack and the blueprint.
  3. This is creating a system that might perpetuate the exclusion that pervades health and industry in India.

The Ispirt foundation.

Pretty much all learned groups so far have opined that before embarking on this glorious project we need to

  1. Address systemic inequalities, and don’t ignore the fact that the lack of tech is not the core issue with health delivery in India.
  2. Improve the data protection standards in India, pass strict data protection laws and then start this project

However, as I already pointed out, a non-profit with no official links to the Niti Ayog or the MoHFW is currently holding consultations with the industry for building the NHS and has already built parts of it.

Some questions that I am unable to find any answers for in official documentation or RTIs filed on this issue by others are

  1. Who appointed them? What was the process? Who entrusted them with this highly complex job of creating a digital infrastructure for India before we finished discussing what infrastructure we really need?
  2. Who do they answer to?
  3. Do I and other civil society organizations have a right to be heard by them?
  4. Is it even legal to start building the NHS using an informal agreement when neither the NDHB is finalized, nor are the laws around data protection passed?

Neither their website, nor the publications from Niti Ayog or MoHFW have any clues to give us.

What we see here is an organization that uses public resources and is creating public goods, but has no accountability to the public.

We do not know if the government designed and operates this or it has been subcontracted to them

You could say that has been designed to “get things done” and avoid the red tape.

Which is great if you’re building one app, but when you’re building national infrastructure, and if you are outside the purview of the RTI act, or any parliamentary oversight, and you are funded by a small group of tech billionaires, there is a problem.

Overall Recommendations

  1. Transparency about who is building the NHS and who they are accountable to and if this is even legal
  2. Create Systems that make consultative progress easier – I would love to have signed up for a newsletter that tells me that comments are elicited on a health policy related issue from the govt. or its organizations.
  3. For the industry and the folks at NITI etc. to understand that consultative building, doesn’t mean slow, it means deliberate and harm reducing and exclusion free. The voices of the most vulnerable people in this nation are not being represented or consulted with while designing a system for them
  4. Civil society, policy specialists, activists, FOSS proponents – Participate – join ispirt consultations, and listen and comment. Get involved.
  5. For all these groups working in isolation to start talking to each other. Like the people’s health movement, we need a coalition of health technologists, policy specialists and health advocates.

References

  1. Mishra SK, Kapoor L, Singh IP. Telemedicine in India: current scenario and the future. Telemedicine and e-Health. 2009 Jul 1;15(6):568-75.
  2. Mishra SK. Current status of E-health in India. Retrieved from openmed. nic. in/1265/01/skm12. pdf on. 2008;30(06).
  3. DeSouza SI, Rashmi MR, Vasanthi AP, Joseph SM, Rodrigues R. Mobile phones: The next step towards healthcare delivery in rural India?. PloS one. 2014 Aug 18;9(8):e104895.

Footnotes

[1]: While numbers as high as 250 are often touted, in a recent answer, the GOI has clarified that the ISRO currently has 130 telemedicine centers operational: And it is putting up a new siddha medicine telemedicine project. ↩︎

[2]: I maintain an updated scientific bibliography called the “case for telemedicine” , you’re welcome to comment. ↩︎

[3]: Objective and good quality data on this is sparse as it’s largely large consulting firms that have provided numbers, here’s one figure to explain this from the McKinsey Digital India report of 2019  ↩︎

[4]: Some further reading on the legal issues in telemedicine referencing case law ↩︎

[5]: The cost and cost benefit of EHRs is a whole different thing to consider as the cost doesn’t stop at development, but continues on into implementation and more. More on this topic- Wang (2009), Smith (2003) One clinic’s experience , Fleming (2011) Financial and non financial costs . ↩︎

[6]: The Linked SFLC article on NDHB provides a clear and detailed analysis of the privacy issue. But here are some direct links

↩︎

[7]: Data ethics and tech ethics are too vast for me to cover here but here is some further reading: ↩︎

  1. Why ethics cannot be ignored in technology
  2. You Tube’s radicalization problem
  3. What you need to know about disinformation[Video]

 

 

Let’s welcome automation in clinical medicine

The longer I work in clinical medicine, the firmer my belief that a truly patient-centrist health system can be built only if we move away from hospital-centric medicine and let patients take charge of their health.

We need to consciously/purposefully move towards a clinical model where parts of the decision making process are augmented and even replaced by the machine, and happen between the patient and health-care tech. Making humans do the things we are so bad at makes no sense when we can have machines do it better.

People’s health in people’s hands means reducing the intervention and power doctors and health professionals have in the care-giving.

I see this increasingly in primary care where so much of the issues do not need a medical intervention. So many of these encounters are for answering “is this a serious problem?” and “make me well right now”.

Meeting a health professional if you have a non-serious issue is bad for both patient and doctor. Going to a doctor with a Upper respiratory infection increases your likelihood of getting an (unnecessary) antibiotic manyfold (stop justifying this, please).

On the medical side — we know that there are a lot of things GPs should be doing that they don’t have the time for, how about we welcome those things that truly do give us time — automation?

I long for a day when my patient can ask his mobile phone app if the sore throat he has is a simple viral thing or if he needs to see a human clinician (which he rarely does) and make an informed decision.

I don’t think that day is far.

PS: We have over the counter drugs, but still need medicos to tell people when/how to use them.

This was originally posted to LinkedIn

Outercourse

I heard the term “outercourse’ for the first time in college. We were in a consultation room and in walks a resident to discuss a case with the prof. He says “sir patient has done outercourse and wants to take ipill”.

The prof gave him a lecture about how you don’t have to discuss every case and anyone who asks for contraception should just be given contraception.

Then when he looked at us and our puzzled faces, he explained what it meant, and then a comment on many things. “All these kids claims to have only done outercourse, but so many become pregnant, must be indian fertility”.

Digital health – Don’t throw the baby out with the bathwater

Dr. John provided us with an excellent summary of the ills of the specialization/hospitalization system in his article here. A summary of what he said is: Provide good primary care, not flashy (digital) solutions and tertiary care complexes. 

There is no doubt that primary care needs to be the foundation of good healthcare however, it needs to be said that that there’s an unsolvable manpower problem with the traditional approach to healthcare, and primary care in particular.

1. We’re producing world class doctors, but not even close enough in numbers to meet the needs of our country, even if they were somehow distributed rationally in primary care.

2. We need to think beyond the doctor, as she is only a small part of the system. Utilizing nurses, health aides and even patients and patient communities themselves in delivering healthcare is essential. There are ample examples from various parts of the world that demonstrate the effectiveness of this approach

3. Even if we were to restructure healthcare delivery to utilize every link in the chain, from patient to super-specialist, there’s still a significant manpower crunch, as even a cursory examination of the NHS primary care system will inform us.

4. The App mania has indeed taken the focus away from improving access to improving comfort, but the two are not mutually exclusive, neither does it mean that that’s all digital health can do.

5. The manpower problem, along with the knowledge problem, which is a discussion for another time, can be significantly reduced by investing in relevant technologies. This again has been well demonstrated.

6. Technology can only provide solutions to problems it is trying to solve. The overwhelming mandate of the digital health market is “make life easier”, not, “make healthcare accessible”. This lies at the core of  why all this big talk in digital health often does not translate into improved healthcare immediately.

7. In the end, it comes down to incentives, neither corporate healthcare in India, nor the larger public/govt health system in India is investing in creating such solutions, or providing incentives or environment to technologists to work in this field.

Till this shift happens, we’ll keep pining for solutions that no one’s working on. 

This post was originally posted on LinkedIn

Rape culture

And why we should care


Inspired by a recent post that explained Rape culture very well. Please read it.

We’re rape culture

I’ve been scared to walk on a darkly lit road maybe a handful of times in my life.

Every woman I know has to walk with full awareness of her surroundings, every single day all day long.

And this is considered “common sense”.

We’re violent.

Rape culture is not an isolated phenomenon

Violence is not just physical, but emotional and social and structural.

Right from the beginning, there have always been inequalities, and those with more, be it money, rights or power, always took away from those who had less.

There always has been subjugation

And war

Our treatment of women could be seen in the context of the overall violence that is human culture.

“Rape culture” is a (big) chapter in the story.

The threat of sexual violence is not limited to women. It’s anyone anytime anywhere who’s weaker. Physically, socially, structurally.

Ask any transgender person In India – or a gay man, strong, physically, but vulnerable, socially [TW: Rape].

Ask any young child, boy or girl , in a warzone.

Ask old people, young people, orphans, incarcerated people.

And sexual violence is not the only kind.

There’s the all pervasive physical violence of growing up in communities where children beating each other up is just boys being boys.

There’s the daily threat of violence hanging over beggars, the invalid, and even the strong pick-axe wielding laborer.

Violence from the police. From pay-masters, from care-takers, from local goons, mafia and just driver-bys who don’t like the sight of them.

There’s economic violence, of course, all about policies and embargoes and things too complex for me.

There’s structural violence, in healthcare, where a doctor is the boss. Where a nurse is hired for hard labor, not her brains. Where “you just do what I say, or go somewhere else” is the norm, even when it’s my health, my life, that’s being discussed.

In government’s policies which favor some kind of behavior over others. Which tell you that you’re being watched all the time, and that saying or doing something that displeases the powers that be will be costly.

Too depressing, this is. Let’s smile a bit.

http://www.reddit.com/user/popisju

Aren’t baby elephants the best? For a change, we’re protecting them now.


Things are better than ever in history.

Sort of.

Relative numbers- the rate, or ratio of a thing, as opposed to absolute number.

By relative numbers, there are far fewer deaths from wars. Far fewer violent crimes, and far fewer deaths from poverty.

By relative numbers, far fewer women are at risk of violence perpetrated by their employers.

By relative numbers, far fewer mothers die in childbirth.

There’s also outrage.

People are talking about rape. When someone says something ghastly, like Indian ministers regularly do, people are shocked, they demand apologies.

Perceptions about violence has changed. A hundred years ago, a public hanging would have been gleefully attended by hundreds. Today, we can barely look at photographs of these events. In fact, there aren’t all that many public hangings anymore.

People are asking for safe cities.

There are Gay Pride marches.

And Slutwalks.

We’re aghast when we hear about violence. Not the social media kind of aghast, but actually. It hurts us to see others’ hurt.

This is a luxury not afforded by most people who have lived before us.


Why talk about the whole story?

Definitely not to discredit the existence or enormity of rape culture.

But to underscore that it’s violence as human choice we are fighting, not an isolated behavior. And that admitting that rape culture is real is an important step in addressing the violence culture.

And to remember that some of the best ways to fight rape culture, as with any form of violence, may have no direct link to it. Like fighting for sanitation, or universal health care, income inequality education of women, child marriage, female infanticide, diversity at workplace, or organizing against governmental corruption.


But

What do you believe?

That we are improving as a species, or that we’re worsening?

We can’t objectively know, you see, we can only argue, believe and act.

Mostly act, I hope. Because that’s what fits my belief system.

That’s what helps me make sense of my world and gives me (one) reason.

Our basic nature

“It is one of my fundamental beliefs that not only do we inherently posses the potential for compassion but I believe  that the basic or underlying nature of human beings is gentleness. —[Tenzin Gyatso the 14th Dalai Lama]

For most of my life, I have held that man is essentially a base, angry, hurtful animal. Gentleness and kindness are acquired through civilization and practice, and if given a chance every person would do the thing that benefits them the most, even if it hurts others.

The online conversation in India has recently become rape-focused. Triggered by the Delhi gang rape, what was a tsunami of outrage is now a stream that is here to stay. Almost universal in the portrayal of rapists is the use of terminology that indicates that men who rape are reverting to their “real” nature. Forget what this says about men, what does it say about humans in general?

Yet, we do not have difficulty in believing this. This drives us to propose the harshest possible penalties on rapists, and insist that the basis for a rape-free society would be harsher punishments, and longer sentences. I’m even hearing suggestions that minors who commit sexual crimes should be treated as adults.

I would have discarded the Dalai Lama’s belief as religious wishful thinking if not for the evidence he presented. He asks why, if we are evil, does evil hurt?

If we are by nature evil, why does it hurt us so much? Why does good have physical as well as psychological benefits?

Not all “good” behavior has proven benefits, other than feeling good. But many do, and from violence to resentment, there is research to suggest that negative emotions and “bad” behavior can lead to physical effects.

It’s a good question, isn’t it?

Note: I’ve been re-reading “The art of happiness” a book that looks at Buddhist teachings about happiness in life from the point of view of a modern psychiatrist. The author, Howard Cutler is a  psychiatrist who follows His Holiness the Dalai Lama around for years, and catalogs the dialogues he had on topics ranging from romantic love to the nature of suffering. The book is very well written, easy to read and for any dysthymic/depressed person, a must-have. The quote above is from the book.

Fixing the healthcare mess; Satyameva Jayate or showmanship?

Dear fellow Doctor; from your Facebook posts, emails to me and tweets, it is obvious to me that the Satyamev Jayate episode on corruption in healthcare worried you deeply. some of you were happy that such an exposé happened, but most of you were worried that there was over-dramatization and untruth in the presentation, and that this would lead to doctors loosing respect in the sights of their patients. As it is, India is known for its violence towards healthcare personnel, it is only fair that you feel that people would use this show as an excuse to attack more doctors.

I too, felt that many of the things Mr. Amir Khan said were unbelievable, some of them were clearly exaggerations and one-sided and I wondered about the truth behind the cases he presented.

But before we jump into another analysis of how Amir Khan got his medicine wrong, let’s look at a few other things.

Here is a list of some of the recent healthcare related scams and exposes that happened independent of Mr. Khan
  1. Senior Professors of prestigious institutions caught following orders from Pharma companies about drug safety reports to the DCGCI.
  2. AMRI, Kolkata hospital fire – revealed bad infrastructure, collusion of top doctors in hushing up things, lack of training and preparation in dealing with emergencies.
  3. Female infanticide – Millions of female babies are being aborted. A phenomenon Involving parents, Radiologists, Gynecologists.
  4. IMA protesting against nurses strike even as they support doctor’s strikes. This, in-spite of the horrendous working conditions and pay of nurses.
  5. MCI’s dissolution – It was so corrupt, that even a corrupt government had to agree.
  6. Surrogate mother industry – poor women being exploited, paid, but not as much as promised, not following international norms in number of pregnancies.
  7. Harvesting of ova- recent report shows how this is probably harming young girls without their knowledge.
  8. NRHM scam for which 22 doctors were suspended – INR6000 Crores is thought to have been stolen.
  9. Hysterectomy epidemic. – Need I explain?
  10. Illegal clinical trials and deaths from them.
  11. Reports of patients being affected from drug trials and not being compensated.
  12. The AYUSH report – No standardization, AYUSH doctors prescribing non AYUSH medication.

There are more, of course.

Let’s now look at the main points raised by Amir Khan in his program; not specific cases, because he is not a doctor and is not qualified to make judgment calls on treatments given to patients. Let us just look at the basic complaints patients had.

  • There is lack of communication between doctors and patients. They don’t feel like they are part of the decision-making process about their own disease.
  • There is a lot of bad handling of deaths, accidental deaths etc. News not being shared, defensiveness, etc.
  • Actions of many or some doctors is leading to a wide-spread distrust or doctors, more so because if you go to 2-3 doctors for the same problem, they often suggest different treatments
  • Issues with improper consent taking and explaining of need for surgeries and other procedures.
  • Lack of information about what a hospital is licensed to do, what training doctors have, and the fear that people without sufficient training are treating them.
  • Referral fees, cuts and other forms of bribes paid to doctors affecting medical judgment.
  • Money being a major deciding factor in issuing medical college licenses and other kinds of licensees.
  • Bad policing by medical bodies leading to un-checked unethical and bad medical practices.
  • Too much power held by private players who don’t care about medicine, just profit.
  • For the government, healthcare spending seems to be low priority.
  • Poor get differential treatment.

Is any of this fabricated or unreal?

They are real; you and I know this.

We are poor communicators, busy as hell, running between wards and OPD or from one clinic to other, often we just cannot find the time to sit down and explain things to each patient. There is also the problem that what we think is communication might not be what the patient wants, and our training does not really help or prepare us to communicate better.

All of you have heard stories, of patients being admitted into the ICU for what turned out to be gastritis, and probably seen patients who have had two cholecystectomies and appendixes removed from both sides of the body. This happens, a lot, and it is a frustration we all share.

How can we reconcile with the fact that an unknown, but very large part of healthcare practice in India has a less than ideal or even acceptable level of quality and that the system is designed not for the patient, but for the professional?

While we mull on that, here are some things he got wrong, in brief.

  1. Using branded expensive drugs and not cheap generics – Not all drugs have generics, not all generics are tested, and in many instances there is significant difference in quality. There is also the patient’s expectation to use standard medicines. Much as I hate them, I can trust the quality of medicine made by a large pharma company, how do I trust a generic?
  2. Healthcare as a business is not necessarily evil, and the solutions that were put forward, including making everything government run is simply out of touch with reality. Your neighborhood green grocer is a businessman; this does not mean he will sell you poisoned vegetables if it gives him better profits. Businesses can be run ethically, and markets have great power of self-regulation.
  3. Doctors have a right to livelihood. Just because we are doctors, to expect sacrificial living is ridiculous. If indeed, as Amir Khan suggests, we are the smartest of the lot, then we deserve proportionate incomes.
  4. Doctors control only a part of the healthcare system; costs of drugs are for most parts out of our control, as are institutional costs. Blaming doctors for high cost of drugs comes from not understanding the basics.
  5. Doctors have an exalted position, but this kind of a mess could not have been created without collusion and involvement of regulators, businesses, government, other members of the medical team, and the market. Blaming just us is myopic.
  6. “Most doctors in India need to get their licenses revoked” is an unforgivably careless and unsubstantiated claim. While I don’t want an apology from him, Mr. Khan should know that it only displays his ignorance.
  7. “Will not see a doctor in India” What about Devi Shetty? Again, a very careless thing to say, but hey, it’s his choice. There are people who don’t want to vaccinate their kids, some people even say this on TV, but that is their choice, their life.

Back to the show.

Most of the reactions against the show hinged on one of the cases discussed in which there was ambiguity about the process. In this clamor to prove that Amir Khan got his medicine wrong, we forgot and ignored the other stuff, the stuff that I listed above.

Dr. R Srivatsan, Senior Fellow at Anveshi Research Centre for Women’s Studies wrote this in an email when this episode came out:

I think when a critique is mounted against you, it is important to look close and hard at yourself and the community you belong to. Where there is smoke, there is bound to be a fire you don’t want!  Most often people don’t have the time to bother to criticize you — except when you cause a great deal of pain.  Criticism is an opportunity, a possible door to transform a process — it has to be nurtured, not snuffed out with hurt defensiveness.

Could we benefit from such a show? Can we use this time to weed out or at least distance ourselves from those whose practices all of us find distasteful?

Doctors are at a particular advantage here; it doesn’t matter how famous Amir khan is, it doesn’t matter how widely his message reaches, people still need doctors. Maybe we can use this as an opportunity to make things better.

Let’s agree to this:

  1. People who were on the show are real people; I think it is safe to assume that they were speaking their truth. Even if one of them was not, there were others who were. They don’t need to speak untruth because there is no lack of bad diagnoses being handed out. We need to live with the fact that there are unscrupulous doctors, and we all know people who fit the bill.  Protesting this fact is only helping them.
  2. Amir Khan is an actor.  He runs a reality TV show. He is not a scientist, has no background in public administration, and the show is not a journal nor a scientific exposition. There will be things wrong with the show. He will get facts wrong. Have you met people who spend their Sunday morning reading out the Journal of Industrial Biochemistry to their families? Didn’t think so. Facts are often boring, Mr. Khan will try to make them attractive and sometimes, the real face will get buried under the make-up.
  3. No silly excuses. Some of you made what is possibly the silliest of excuses, ever. “Everybody is doing it, why target Doctors?” SILLY. I’m going to let you figure out why.

We work long hours, the pay isn’t amazing, the system is corrupt, without cutbacks and the pharma parties, life would be tough. We want that to change, we want to practice great medicine and have a life.  We want pays that are proportionate to our effort and attainment, we would like to be respected and acknowledged for the good work we do.

How is cursing Amir Khan helping us achieve any of that? What will help? I think we know some of the answers, not all of them. What are they? Lets talk.

The success formula- Shyam Benegal on Hindi Cinema and the challenges of New cinema

The cinema situation : A symposium on the struggle for a genuine approach

In 1977 there was a symposium examining “THE CINEMA SITUATION”. The symposium was attended by some greats of Indian Cinema like Mani Kaul,  Kumar Shahani, Adoor Gopalakrishnan, Shyam Benegal etc.

I discovered a quote from Shyam Benegal’s essay on tumblr via Dhrupad and was hooked. I discovered that the quote was from a longer essay on the formulaic nature of Hindi cinema and the problems new cinema was facing and some solutions. I have a 1400 word long excerpt from that essay, which you can read in full at the above link. But before we jump into Shyam Benegal and his lovely essay, here is the symposium’s topic defined.

The problem

India’s film industry has manufactured and peddled over many decades a distinctly unique commodity to a wide and unsuspecting audience. Based primarily on fantasy, it has mocked at every value in a richly diverse culture. Mock heroism, mock sex, mock dancing,mock singing, mock religion, mock revolution — the lot. In its end product, it has shown the degree of degradation to which a transparently synthetic approach can lead. Its influence on society has been startling — in dress, styles of living, methods of working and,most shatteringly, in the dreams and aspirations of a deprived people. The bizarre world of the screen is the world to reach for. Unfortunately, this commodity faced no challenge of any stature until the arrival of the new Bengali film under Satyajit Ray. His Pather Panchali showed that films could be made with little finance, and no stars, and with integrity. Since then, there has been a gentle struggling, a push here, an upsurge there, a raising of more authentic voices, the slow birth of an indigenous cinema. But, it is beset with problems. Finance, distribution and, infinitely more serious, that of communicating in a medium which is not mock fantasy any more. For, the audience has come to regard the film as synonymous with a particular breed of song, dance, vulgarity, burlesque, violence, crudity, escape, often under the mush of misleading progressive situations — rich man poor girl, rigid father growing son, erring husband devoted wife, etc. Is it ready, even in small measure, to receive a new experience from a familiar medium? If not, then how can the struggling new cinema survive and break through an obvious initial rejection.

The success formula Shyam Benegal

The success formula by Shyam bengal

THE Hindi film business ,in India consists largely of working out the equations to make commercially successful films and then to work out a strategy of publicity and distribution to fake in the largest profits possible—a vast, speculative activity that begins with formulating and analysing the success of any one or more films running at any given time in terms of what makes them tick, which usually means the right mix of ‘ingredients’ such as stars, songs, and music, the plot innovations and a generous helping of what are known as production values such as enormously expensive sets and property, lavish public relations’ devices like parties replete with cabaret items in five star hotel suites.

There are storywriters who will produce on call’ several plot lines lifted from successful films, mainly from Bombay and Hollywood as well as from popular western writers like James Hadley Chase to produce a biryani of a film all ready to be hogged by the film-going public for 50 weeks or more in cinemas all over the country. There is a huge demand for well-known stars to act in these films and for music directors to turn out their lilting songs, and for dancers to give new, sexy turns to’ their cabaret items.

The directors who direct them are recipients of paeans of praise for their originality. The producers are the happiest with their success and end up signing up more and bigger stars for their next ventures as distributors willingly take even greater risks by committing larger sums of money for each territory. The pattern of business points to an industry that is happily and profitably stewing in its own juice.

There are several kinds of success formulae. Each one is specifically categorised, such as social drama (meaning poor boy/rich girl or vice versa), family drama (lost child, suffering widow, large doses of amnesia), action movie (good man-turned-bad dacoit-turned-good man), historical (now not much in vogue) or mythological (generous helpings of sex relating to gods and goddesses). In each category, the need is for the biggest star or stars. If you can afford it, you would have all of them together. The music director is chosen according to the size of his contribution to the latest hit songs (do I hear a resemblance between his tunes and the top-of-the-pop in London?). Similarly, the ace writers. Writers, of course, do not really write. They sit in posh hotel suites and narrate scenes for the next day’s shooting.

It is an expensive and serious business. Very expensive. And films flop. Despite or, perhaps, because of this, the Indian film industry ticks. Flop is a relative term. Very few films are known to fail altogether. The only thing that might happen to a film is that it may recover its cost over a longer period of time

Shyam Bengal in his Office
Shyam Benegal 2010

The serious problems that beset the industry are the highly inflated rates paid to the marquee names in the film—the stars, the music directors and, recently, the music directors. There are stars who sign up for as many as 50 films at a time. Logically, it would take him or her about ten years or more of work every day to complete so many films, but they are signed up nevertheless. Similarly with music directors. The chances are that a lot of money spent on such films will prove to be irrecoverable because the films are not likely to see the light of day. And whatever is spent in signing up to start the film will be lost forever. This constitutes an enormous waste. Then,again, there is the matter of dates.

It costs a lot of money to set up a shooting schedule. In this situation, if a star cannot give dates the entire expense in mounting the schedule is lost. The stars themselves under these conditions tend to develop an inflated sense of their own importance. They feel
no obligation to keep to their schedules, nor do they feel the slightest compunction to break appointments—a bit like successful politicians. They appear to follow no normal set of rules.

Again, there is a reason for this behavior. Most producers have no money to begin with. They trade on the names of stars, music directors and writers to raise money. The stars are generally very insecure, never sure that any of their films ar going to be completed. They cannot possibly take the risk of signing just one of two films. if the films do not get off the ground and get stuck mid way they are out of jobs. Nothing is worse than an actor without a job.

The distributors who market films have defined their films as those meant: (a) for the masses, (b) for the classes, (c) art films that will attract no audiences. The films that are likely to be the biggest successes are the ones made for the ‘masses’. They could be defined as films that are utterly naive in their story content, with non-existent character development and two dimensional emotional and intellectual attitudes.

Films that will fetch the highest price are the ones that have the largest number of stars, a storyline replete with what are now essentials — thrills and chills, rape scenes, dance numbers and cabarets, choreographed fights and comedy. (There are specialists who are known as ‘thrill masters’ apart from ‘fight masters’ and ‘dance master’. Soon one expects there will be ‘rape masters’) Brilliant colours and sharp cutting is a must.

…….xxx…………

He goes on to talk about the costs incurred by producers in a typical film and establishes the reason why the films are shot they way they are.  Then he moves on into the need for a sustaining structure for alternate cinema

…….xxx……..

If we are serious about developing an alternate cinema, the FFC would have to develop a distribution circuit that is able to compete for audiences with the regular so called commercial films. In addition to this the cost liability for the production would have to be borne

Censorship

A more insidious development in films has been caused by outside factors. Paternalistic and straight-laced censorship has made film producers increasingly irresponsible. As we all know, authority of a certain kind often creates an irresponsible attitude in those who are under it—they expect to be corrected rather than correct themselves. This has become so acute, that many films only attempt to push in directions in which the censor board is likely to be heavy-handed, only to check out how far they can go. Often, the only innovation in a film comes in the techniques to project ‘soft’ pornography or violence that would catch the censors napping. This has led to the making of films which encourage ugly social attitudes, particularly between men and women. They are done with such crudity that one wonders whether those who see such films come unscathed out of them.

As is well known that with cinema, particularly when it happens to be the only entertainment medium, life starts to imitate film. We have only to look at those parts of the country where film is the only entertainment, medium to see that this is true. The way boys regard girls, the way they dress themselves, the kind of music they enjoy most, the speech they use—and with the new-rich—the kind of interiors they have, replicas of film sets.

Yet. with all this, a different kind of film also runs. Audiences will see films that reflect social realities. All that it requires is the kind of distribution which the commercial industry provides. The movement has already started. What is needed is the infra-structure that will make it self-generating.

Indian film or, more particularly, the Hindi film, from its very origin has developed its formats’ from the existing theatrical forms. The songs, The dances, the main plot and its comic parody, have all been absorbed by the cinema. If the alternate cinema has to grow, it cannot ignore these factors^ An extension of these forms is needed rather than unfamiliar ones and a far truer depiction of social realities. Only then will it be able to seriously compete for audiences. Short of this, the new cinema will be guilty of producing films for the sake of a small cineaste elite

Expertise, politics of health and the Doctor as an Educator

This post is culled from an exchange in a medical group I am a member of. Mr. Srivats has kindly granted my permission to reproduce this gem of a letter. Pay particular attention to the last 3 paragraphs.

Dear Friends,

As I promised in my previous mail, I am adding to the question of the relation between expertise and the politics of health care based on the progression of the Gentamycin – Co-trimoxazole debate. I would remind those who don’t know me, that I am not a doctor, I have little knowledge about these drugs, or drugs in general, and my intervention is related to precisely how to negotiate expert knowledge and a democratic form of medicine.

The specific case here is the exchange between Drs. Sri and S about the pros and cons of discussing such a complex issue in a public forum. On the one hand, I am able to see entirely the validity of Dr. S’s concern that imprecise knowledge and opinions can result in confusion, especially in a multilayered group like the xx egroup. On the other hand, it is precisely the question of expertise and the need to give direction without causing confusion that runs against the problem of a democratic medicine. Should we prevent confusion? Yes, if possible. Should we discuss the matter openly with a group that doesn’t have expertise in the matter — Yes, certainly. Whether it is the case of medical intervention for babies or nuclear power at Koodankulam (I am taking this comparison because of the expert dimension and impact on populations here too), the answer has to remain positive. How do we resolve this dilemma? Not only at the level of health care professionals, but also at the level of patients and communities.

This is where I feel that the position of the doctor as an educator must be examined. Do we have general discussions with parents and the community about giving injections to new-born children? Or oral medication? They certainly won’t have any expertise but they will know what the baby is actually going through on a 24×7 basis. I also have it on some authority that in the rural areas and perhaps among the poor in general, injections are a sign of a ‘good doctor’. It is therefore likely that they would welcome injections for their children without in any way of knowing about the risks and consequences. But I feel since the risk is theirs — their children’s lives to be precise — they should know, confusing or not. I will stress here that there is no point in romanticizing the people in the neoliberal mode — ‘people know best and they must make an informed consent’ — as we all know from the clinical trials scenario, informed consent is a travesty of the right to know what is being done to your body. Yet, I can’t help feeling a discussion must begin, with a democratic education and consciousness raising practice among committed medical professionals. I hope this doesn’t sound like preaching — it is more an exploration of possible avenues for a critical medical practice.

About toxicity and side effects too. This is a general aspect of medical care in its history — the positive iatrogenic effects of medicine (i.e. not the failures of medicine due to bad practice) but the costs of the successes of medicine in patients lives and health over generations of research, shots in the dark, and development. In the final analysis it simply isn’t enough for the doctor to decide that a particular percentage is below the threshold of significance and that therefore the particular medicine can be treated as safe. How can a democratic medicine begin to function in such a way that people know about the risks they take. And yet, I am aware that the general consensus (and medical science’s opinion) is that such an approach is impossible, but isn’t such a conversation imaginable (at the simplest, individual level, and at a much more sophisticated community level): ‘One in ten thousand babies who are given this medicine die, however, it is also documented that the following benefits do occur to the majority who are given it — do you want to take the risk?” to which the parent replies “No” or “Ok, Inshallah!”

It is perhaps likely that doctors who ask these questions will lose their practice to the confident practitioner who simply goes ahead and gives the injection or the tablet — but that raises another problem. How do we educate people out of this blind faith in the expert? The question is how to make the engagement with the doctor a face to face encounter, rather than one of command and obedience.

Would the members of xx feel it is necessary to pioneer this difficult political practice of a critical democratization of expertise? Not in the sense of making everybody technologically equal, but in the sense of teaching people to think about a decision making process on an issue that has bearing on their infants’ mortality (or any such issue of medical care)?

R Srivatsan
Senior Fellow
Anveshi Research Centre for Women’s Studies