Patient advocacy groups: Need and opportunity in India
With an increasing number of corporate hospitals, healthcare related issues, research trials and undue attention by media in India, there is a need to focus more on patient’s rights and protection. In India, multiple agencies like regulatory bodies, scientific review committees, ethics committees, NGOs, etc. work toward patient rights and protection. However, these agencies are inadequate to cater to the general issues related to patient’s rights. There’s a need to have a separate group of people who provide advocacy to the patient, or simply, a patient advocacy group which will work explicitly in these areas to increase transparency and credibility of healthcare system in India. This group will provide special attention to patient care and protection of rights from the planning stage rather than at the troubleshooting stage.

Advocacy means “set of actions whose main objective is to sensitize with a view to influencing decisions about a cause or policy in a stated direction” and is done by “pleading or arguing in favor of something”. In social advocacy, the people are the objects of the stated good to arise from such actions. In patient advocacy, patients are the objects of the stated good to arise from such actions. Advocate is a person who does the act of pleading or arguing in favor of something.

Patient advocate is a liaison between patients and healthcare providers (HCPs) in order to improve or maintain high quality of healthcare for the patients. The terms “patient advocate” and “patient advocacy” have a broad range of usage and may be applied to the actions of many different individuals and organizations.

Role of Patient Advocacy groups in India
Though we have governmental agencies and NGOs who are performing many activities in healthcare sector, there is no single organization in the country which will truly qualify as a PAG. Such groups can further improve the overall quality of healthcare system in India by supporting the patients in fighting for their rights, welfare and safety with HCPs. PAGs can play an important role in improving the quality of healthcare system in India by the following means.

Barriers to Improving Patient Safety in India
In low- and middle-income countries, adverse events may develop from unsafe care in as many as 18.4% of patients, with 30% of those events leading to the patient's death. This unsafe care often manifests as therapeutic error, misdiagnosis, counterfeit pharmaceuticals, or unsafe injection practices. Given this significant burden, policymakers, public health officials, and researchers interested in improving health outcomes in low- and middle-income countries have increasingly focused on developing interventions to improve patient safety.

While patient safety has been a major area of research in industrialized nations for over a decade, data on the root causes of unsafe care in low-income settings is sparse. For example, attitudes and beliefs of healthcare providers about patient safety are important to the success of safety-improvement interventions in the US and Australia.(7,8,9) Patient safety culture, a term used to refer to the behavior of health care providers relating to mitigating risk of unsafe care, has been used in many industrialized settings to assess a health system's capacity for improving safety.(10,11,12,13) While some have studied providers’ attitudes, beliefs, and behaviors about patient safety in low- and middle-income countries,(14,15,16) most have been limited to the industrialized world.

Patient safety is a fundamental principal of healthcare. Medical care occurs in complex systems. The goal of a Health care organization is to deliver safe, high quality health care to our patients. Despite the
best intentions, however, a high rate of largely preventable adverse events of medical errors occur that cause harm to the patients. Adverse events also increase costs for additional treatment, claims and litigation.

There is a need to have a culture that overtly encourages and supports commitment to patient safety, open communication in a blame free environment. We need to develop safety designs and reporting mechanisms for any situation or circumstance that threatens, or potentially threatens, the safety of patients or caregivers. The system should be able to view the occurrence of errors and adverse events as opportunities to make the health care system better.

Patient safety is a serious global public health issue. In recent years, countries have increasingly recognized the importance of improving patient safety. In 2002, WHO Member States agreed on a World
Health Assembly resolution on patient safety.

Estimates show that in developed countries as many as one in 10 patients is harmed while receiving hospital care. In developing countries, the probability of patients being harmed in hospitals is higher than in industrialized nations. At any given time, 1.4 million people worldwide suffer from infections acquired in hospitals. The risk of health care-associated infection in some developing countries is as much as 20 times higher than in developed countries.

A nationwide comprehensive study (2002-2004) ‘Assessment of Injection Practices in India’–by the India CLEN Program Evaluation Network (IPEN) for Department of Family Welfare, Ministry of Health & Family Welfare indicates that a very large number (3 to 6 billion) of injections are administered in India every
year. Nearly two-thirds of these injections are unsafe (62.9%).

We plan to do einterviews with MBBS doctors to understand 4 things
1) Tests or questions you ask in first few meetings
2) What it means in medical terms
3) What it means in non medical terms
4) What should the patient or care takers do

We might interview Aurvedic doctors, homeopathic doctors, Yoga teachers on this health issue

Video links
Urgent Care and Patient First

Introduction to Patient First Improvement Programme at Western Sussex Hospitals

What I Love About Patient First

Think patient first in everything you do
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