With an aim to promote and facilitate patient engagement with healthcare providers and policy makers, Indian Alliance of Patient Groups (IAPG), an umbrella body of 12 patient groups working in the areas of rare disorders and chronic diseases, was launched in Mumbai.
Some of the prominent members of IAPG include DakshamA Health and Education, New Delhi; Association of Community Pharmacists of India, Mangalore; Multiple Sclerosis Society of India, Mumbai; and Indian Patients Society for Primary Immunodeficiency, Bhubaneswar.
With member groups spread across India, IAPG has drawn up a broad action plan in accordance with their mission to facilitate and ensure a safe, effective, reliable patient-centred health system in India that provides timely access to the best available interventions for prevention, diagnosis, treatment and care.
The action plan included promoting patient engagement in health policy decision making, supporting access to the best available care across the country, promoting health literacy and ensuring the availability of health information, advancing choice and empowerment of patients and their advocates, building a strong voice in support of building a responsive, patient-centred national and state healthcare system.
Talking about the idea behind the launch of IAPG, Dr. Ratna Devi, a public health and management professional and founding member of IAPG, said, “We held a meeting of pateint-centred organisations across diseases in New Delhi in November 2014 to discuss plan to come up with a pan-India platform giving a strong, collective voice of the patient to support both government and private sector efforts to build a stronger, more accessible healthcare system that mutually benefits patients and healthcare providers throughout India.”
Dr. Ratna Devi, who is also CEO and co-founder of Daksham A health and Education, said, “So far patient movement lacks in India due to poor awareness among people about healthcare. In discussions on healthcare in India, the industry, policy makers and medical associations drive the conversations, missing the most important stakeholder-patient. Uninformed about their rights, Indian patients most times do not have a voice or a forum to raise their voice on healthcare issues. IAPG will represent this often ignored group and help channelise the conversations on healthcare to enhance quality of life and dignity for the patient.”
She added “IAPG will work with government bodies to identify specific issues to be addressed, such as patient safety, quality of treatment, universal healthcare and patient rights. IAPG will work toward the development and adoption of guidelines to standardise care and processes across India, uniformity and enforcement of quality teaching standards and they relate to the patient-doctor relationship.”
Talking about financial aspects about IAPG, she stated “The Alliance will generate fund from corporate houses especially life style sector and government agencies to manage its day to day activity.”
Declining conflict of interest with other oganisations working in the healthcare sector, Dr Devi said “We have nothing to do with them. Since we are working for a navel cause, we welcome concerned groups willing to support us. We are not going to raise fund from tobacco and liquor industries. We are working to educate people about emergency health care needs. Planning helps prevent disease.”
Replying to a query related to implementation of National Health Insurance Mission, she said “Health can not be responsibility of one ministry. There are several ministries involved in it, such as rural development ministry, health ministry, agriculture ministry etc. The initiative has been taken to set up a task force to work on it.”
Highlighting the importance of IAPG, founding member of the body and founder and chairperson of Indian Patients Society for Primary Immunodeficiency, Rubby Chawla, said “With 70 million people with rare disease, 2.5 million cancer patients, 30 million diabetics, 60 million sufferers of mental illness, India has a huge disease burden and needs policy interventions to provide accessible healthcare for all with support from the private sector as well as government. IAPG will be a facilitator to ensure that best decisions are made in patients' interest.”
She said “Member groups of IAPG will exchange best practices for addressing patient needs in a particular disease area through crowd sourcing of ideas. The Alliance will also help individual patient/disease advocacy organisations to provide more detail to their patients and their caregivers are able better manage medical conditions.”