Day 1 (January 23, 2018) The learning exchange workshop on patient rights hosted by SATHI started in Mumbai on 23rd January, 2018. The delegates were from the South Asian countries, viz. India, Nepal, Sri Lanka, and Bangladesh, also from Kenya. The key speakers and presenters were also from civil society, medical colleges and policy bodies and institutions.
Dr. Abhay Shukla set the tone to the learning exchange by contextualising the workshop in the violations of patient rights due to the weak regulatory framework that exists for the private medical sector. He also drew comparative parallels to other countries from South Asia. Dr. Abhijit Das introduced COPASAH, its beginnings and the trajectory of the growth of its idea. He also briefly explained the three thematic hubs and introduced the global symposium. As the key speaker, Mr S.C. Sinha, Hon’ble Member- National Human rights Commission, India could not make it, and his note was read out.
Session 1- Perspectives and Experiences of Policy Makers and Shapers, largely the Indian experiences of the regulatory ecosystem was presented and discussed. There were three presentations which represented the side of policy makers – The presentations were on the Indian Clinical Establishment Act, the regulatory initiatives in the state of Maharashtra and Delhi. Two speakers – Dr. Arun Gadre and Prasanna, added different dimensions to the issue, viz. perspectives of ethical doctors and perspectives, respectively. There was a vibrant discussion with comments and questions from the participants which ranged from the weak implementation, weak political will and nexus of the erring doctors and patient rights.
Session 2: International panel discussion on various country level issues and approaches for regulation of private medical sector It was moderated by Dr. Amar Jesani, IJME. The discussion revolved around three rounds of discussions – what is the health system, the status of the private sector and patient rights, the operational dimensions of right to health/patient rights, how is the civil society engaging to regulate private sector. Across all the countries a common feature was that government has increased restrictions on the NGOs who are asking questions – in Kenya, they have been asked to leave the country, in some other countries NGOs have been silenced.
Kenya and Nepal mentioned that they have the constitutional right to health, where as India, Srilanka and Bangladesh did not have it. The issues of patients’ rights were similar, with inadequate regulation, capping on pricing of health services. Bangladesh and Srilanka have well laid primary health care, which is now getting under the influence of India the context is changing. Private hospitals and CROs from India are making foray into these countries. India’s influence on their own regulatory. Session 3- Lessons from campaigns and initiatives for regulation of private medical sector This session was chaired by Prof. Jaya Sagade from Indian Law School and centred on sharing experiences of campaigns for the accountability of the private health care sectors. The presentations were the summary of the campaigns which were spear headed in several states of India on several issues addressing the private health care sector. It included the following:
Campaign for Maharashtra Clinical Establishment Regulation Bill- Dr Anant Phadke, Jan Arogya Abhiyan, Maharashtra, India:
Campaign for amendments in Karnataka Private Medical Establishment Act- Dr Akhila Vasan and Vijay Kumar, Karnataka Janaarogya Chaluvali (KJC), India
Campaign to regulate prices of essential medicines and medical equipments- Ms Malini Aisola, All India Drug Action Network (AIDAN)
Campaign to safeguard participant’s rights in clinical trials-Mr Amulya Nidhi, Swasthya Adhikar Manch, Madhya Pradesh, India
Briefing on COPASAH Global Symposium: The day ended with a brief discussion and briefing to the delegates on the idea of the Global Symposium which will be organised by COPASAH in 2019. Abhijit Das briefed the delegates on the idea and the process that is thought about the Symposium so far.
Day 2 (24 January, 2018)
Day 2 of the Learning exchange began with sharing of two experiences – one of which was heartwarming and another one, a heart rending one. Adv. Birendra Sangwan, a young lawyer and activist shared about his experience of series of petitions in the high court of Delhi on cardiac stent price capping, India. Due to his continuous petitioning the prices of stents were reduced from INR 80,000 (about USD 1350) to INR 28,000 (appox. USD 400). The subsequent petitions were also filed to prohibit hospitals from raising the other fees on the cardiac patients. The second sharing was by the grieving father Mr. Jayant Singh, who lost his young daughter due to medical malpractice and negligence in Fortis Hospital in Gurugram (Haryana State) where he was charged INR 1.6 million (USD 25000) for 15 days of hospitalization. He narrated the horrifying experiences of dealing with the hospital, the apathy of the staff and the manipulation of the business team in manipulating the processes without giving adequate opportunity for the patient or guardian to have a say in the process. From the experience of his daughter’s death, Mr. Jayant, an Information Technology expert, has started a campaign against the exploitation of the corporate hospitals. Session 4- Panel discussions lessons from campaigns and initiatives to protect patient’s rights Session 4 was held as two parallel sessions, with the delegates choosing to be in or the other panel. The first panel was moderated by E Premdas, Coordinator of the Global Secretariat of COPASAH. The panel has presentation of experiences and exchange of views on the following themes:
Campaign for safety of dialysis patients in Mumbai- Mr Jitendra Tandel, Rugna Mitra and Citizens Doctors Forum
Campaign against medical negligence- Ms Jayeeta Verma Sarkar, People for Better Treatment (PBT), Kolkata, India
Campaign for alert patients and their rights- Ms Nisreen Ebrahim, Rangoonwala Foundation, Mumbai, India
Experience of implementation of charter of patient’s rights and Chhattisgarh Nursing Home & Health Care Establishment Act- Ms Deepika Joshi, PHRN
The second panel was moderated by Dr Shakeel, Jan Swasthya Abhiyan and CHARM Bihar. The panel had sharing of the following experiences:
Campaign against negligence and super profiteering by Corporate Hospital- Mr Jayant Singh (Campaigner against Fortis Hospital, Gurugram, Haryana, India)
Campaign to avail free healthcare for poor patients in Charitable Trust Hospitals- Representative of Kagad-Kach-Patra-Kashtakari Panchayat, Pune, India
Fight against medical negligence – Ms Shreya Nimonkar, Citizens Doctors Forum and Setu Pratishthan-
Experiences of working for the rights of people with HIV- Mr Shashikant Mane, SANGRAM
Consumer activism in healthcare- Adv Jyoti Bhakare, Pune, India
Campaign to safeguard patient’s rights and implementation of Clinical Establishment Act 2010- Mr Pravesh, Mareez Haq Abhiyan, Uttar Pradesh, India
Both the parallel sessions had rich exchange of experiences and discussions.
Session 5- Alliance building with rational, ethical doctors and health workers Dr Sanjay Nagral, Forum for Medical Ethics Societies moderated the session. The key objective of this session was to understand the processes of alliance building between medical doctors, health workers and other citizen groups. The sharing on the initiatives taken was on the following alliances:
Mumbai Citizens Doctors Forum(MCDF)- Dr. Mirajkar, MCDF
Alliance of Doctors for Ethical Healthcare (ADEH)- Dr Arun Gadre
Alliance building with health workers- Susana Barria
Vishasha Consumer Services - R. P. Ramarao , retired District Medical Health Officer, and secretary VCSs
The discussions highlighted the debate between good doctors – bad doctors, the power relationship between doctors and nurses, where even when a doctor does malpractice, it is the nurse who is involved without having any say, the roles and distinctions between the business entrepreneurs and management, doctors and other medical and other allied professionals.
Session 6- Way forward and networking Discussants- Mr Gauranga Mohapatra, Mr Ameer Khan and Dr. Abhay Shukla
Proposals for strengthening activities on private medical sector by Jan Swasthya Abhiyan and Health movement networks
Charter of Patient’s Rights being adopted by National Human Rights Commission, India
Potential campaign for implementation of national CEA covering various states in India which have adopted this act
Documentation of cases of denial of patients’ rights
South Asia level networking on private medical sector accountability and patients’ rights
Upcoming Global Conference in 2019
Summation of two days: Abhay summarised the key points that emerged from two days:
We are not alone in this struggle. There are many others who are struggling.
Loss can be the beginning of transformation
Significant victories in many struggles
Cause of patient rights is now gaining national attention and visibility
There are multiple strategies – courts, official bodies, legislature, media, citizen’s mobilisation, victim’s activism
Issues: malpractice, overcharging, negligence in private hospitals (exploitation) is becoming a burning popular concern and part of patient rights violation
Pricing of implants and stents is a wedge to penetrate larger space. E.g. a petitioner for stent pricing also has filed a petition for implementation of CEA in Delhi.
Constituencies that patient rights campaign:
Direct victims of medical negligence & malpractice
Mass organisations of working people
Middle class and their discontent
Health NGOs and activists
People oriented doctors & other health workforce
Activist lawyers & legal experts
Suggestions for way forward: The following suggestions were proposed for networking and campaign building:
A common communication and interaction platform including a website
Writing and publishing in the website case studies of violations and medical negligence
E. Premdas Pinto Coordinator COPASAH Global Secretariat