E-Campaign for Patient Right -- Introduction

Ashwin[1] was diagnosed of having acute appendicitis and advised to undergo appendicectomy (surgical procedure to remove appendix) immediately. But for the slight pain in the abdomen in the morning, he felt his health was quite normal and can't understand the need to undergo a surgical procedure at such a short notice. Not wanting to take chances, he felt that he will probably have a second opinion from another surgeon on his condition and whether there is need for an immediate surgery. He requested the hospital authorities to share with him the medical papers, reports so that he will have a second opinion on the suggested course of treatment. He was surprised to find that the hospital now developed an indifferent attitude towards him and their unwillingness to part with information to seek another opinion..

Aditya's [2] 3year old son was prescribed a drug overdose by a pediatrician for the recurring fever. This led to very severe consequences and the child needed ICU care for 3 days and a painful process of recovery due to this excessive medication. Aditya wanted to register his complaint against the pediatrician and the hospital but finds out that there is absolutely no framework for grievance redressal and there is a systemic unwillingness to have one. The prevalent attitude with the people managing the health care set-up's is that such human errors are an inevitable artefact of the Indian landscape and there is not a need to address them and the hospitals do not have a legal or a moral responsibility to address them..

65 yr old widowed Chitra[3] was admitted for a by-pass surgery in a leading multi-specialty hospital. She gathered information about the treatment costs and was given an estimate of the cost involved with the treatment and decided to go ahead with it. But the hospital stated in the middle that due to unexpected complications that came up during the surgery charges have become significantly higher than what she was told in the beginning. Neither she nor the ones who were caring for her were even briefed of such a possibility at any point in time before the start of the treatment. The difference in the rates were so significant that Chitra may not be able to meet that expenditure, which puts her in an un-enviable position of having to choose whether to continue the treatment or not in that hospital.. for not being able to afford it..

Does any of this sound too familiar an experience to relate to what you or your loved ones face while dealing with the health care set-up? Then you have certainly hit upon a web-page, which makes an earnest attempt at addressing one of the fundamental aspects of the complex issue, which has led the health care system to what it is now.

Traditionally Doctor-Patient relationship in our culture has worked on the tenets of basic faith and trust on doctors. In earlier times social accountability (the possibility of earning a bad name due to improper medial advice) and the very dynamics of society which offered scope for a personal relationship with doctors treating or managing the hospitals in towns and cities provided a framework where-in the ability of doctors to self-govern themselves was thought of to be sufficient. However in these times of crass commercialization and corporatization of health care system in our country, the above line of thinking has lost its relevance.

To ensure that the patient’s interests are best served in this system, we need a well defined regulatory mechanism that is defined to the minutest details on its implementation and larger consumer participation towards ensuring its implementation. Fundamental to the realization of any of our aspirations on that front is the articulation of the fundamental rights that a patient is entitled to in this system.

A pertinent point to note here is that a very large percentage of the health care service in India is offered by the private players. The continuing systematic decline of the state run health care institutions is going to further increase this number in the coming years. These private health care players can range from anything like a single person managed OPD clinics, individuals owned 20-30 bed nursing homes to corporate run multi-specialty hospitals. With the broad spectrum of interests that drives the private players in the health care system, without a legal obligation for compliance to set rules for maintaining minimum standards and punitive measures for its dereliction, it is almost impossible to bring in any rational framework to make this wide variety of players comply with the basic rights that the patients are entitled to. The focus of this web-page is to mobilize public support towards a movement aimed at achieving this.

While various organization and bodies in the past have focused on the issue of patient rights in the health care system, the efforts have been quite scattered and invariably targeted at certain specific interest groups (E.g. National Inst of Mental Health and Neurological Sciences (NIMHANS) focusing on the rights of mental health patients, National Aids Control Organization (NACO) guidelines for the rights of the HIV infected). WIth inputs from the Jan Aarogya Abhiyan, the Peoples' Health Movement in Maharastra, CEHAT, the Health NGO based in Mumbai has worked under the auspices of an assignment from the Health Dept. of the Govt. of Maharashtra has worked to evolve a standard charter for the patient rights along with the minimum standards for a small 10 bedded hospital. This Charter outlines a set of the basic human rights of patients and also defines the mechanism for the functioning of health care set-up that would facilitate the establishment of these rights for the patients. This charter was accepted by the health dept. as part of the draft rules prepared by CEHAT as part of the assignment. These draft rules have been waiting from July 2006 for the Health Minister's approval to formulate them as mandatory rules to follow for the hospitals. The charter is focused on the following:

- Right to access health care
· Independent of their caste/creed or economic status, a patient has the right to health care
- Right to non-discrimination
· In the case of HIV-infected or other illness where there is a social stigma attached to it.
- Right to emergency treatment
- Right to Information
· Share information on all aspects of treatment
o Nature of illness
o Complications that can arise out of treatment, cost and expected outcomes
o Alternative treatment options available
o Consequences of not choosing to take the treatment
· Access to his/her medical records at all times
· Discharge/Death summary at the time of leaving the hospital
- Right to privacy and confidentiality
- Right to autonomy and decision making
- Right to seek a second opinion
- Right to have a grievance redressal forum
- Right to have a mechanism to make informed consent
· This is applicable to nursing homes involved in clinical trials

Though the issues and rights based discourse that are outlined above has a pan India relevance, the ground level activities of Jan Aarogya Abhiyan are targeted at getting this charter of rights established at the hospitals in Maharashtra. This requires that this charter gets the approval of the Health Minister of Maharashtra.

The information in the side-bar and the links will take you to pages that will give a better overview on the individual rights. It also includes a chronological summary on the efforts of Jan Aarogya Abhiyan to date on this issue. As stated previously the prime objective of this web-page currently is to mobilize public support for this campaign. As a concerned individual, if you wish to contribute to this cause, it is just a click away. You can sign the E-petition letter outlines the charter and is drafted in the way that the signatories are part of the campaign to demand the Government to make the implementation of this charter a reality.

The long term objectives of this page are also
- Establish a forum to share individual grievances and personal experiences of the people as regards denial of basic rights of patients in the hospitals
- Establish Doctor-Citizen forum, where-in the concerns of the citizens with the hospitals are addressed to a council of doctors representing the private health care system to have a dialogue with the doctors, The activity in this web-page can act as catalyst for the creation of the real one.
- Establish community based participatory regulation in health care system
· Volunteer Activism for monitoring the functioning of the system
· Creation of citizen groups for grievance redressal forums

We welcome any valuable suggestion from the readers of this page to make this campaign a success. We would also very much like to have the readers' thoughts (in the comments space) on any issues that aligns with this current campaign and the long term objectives outlined above.

[1] Names and the incident narrated are imaginary and are done with the sole intent to convey a scenario for reader’s understanding
[2] Same as note 1
[3] Same as note 1