Patient Advocacy
The History of Patient Advocacy
Professional Patient Advocates have been around since the early 1970’s in the developed world, however, an idea a facilitator between the patient and those who heal has been practiced for centuries. In the past, nurses, social workers, even missionaries and other clergy have served as non-doctor counselors to those who are ill. But as the healthcare industry grew more and more complex in the latter half of the twentieth century, the primacy of the patient—his or her will and voice in the service of their own care—was often lost. The need for a pro-patient mediator between the patient and their healthcare providers became a necessity.
Today, Patient Advocates are invaluable resources to patients and their families—explaining healthcare-related policies and procedures, facilitating strong relationships between patients and caregivers, and helping people make the best decisions for their health, healing, and overall quality of life. Though Patient Advocates are not practicing physicians, many have healthcare sector backgrounds/education or an experience of working with physicians. which helps them understand the social determinants of care and look beyond healthcare to help their patients. Most also have years of experience working in many different situations with many different kinds of patients. And all are exceptional communicators whose commitment to the best patient outcomes is unwavering.
In India, very few studies have been conducted to determine health literacy of Indians but all of them are unanimous in their findings that majority of the Indian population lack the ability to access, read, interpret & use available information to make informed choices on healthcare issues. With infrastructural obstacles like unstable electricity & internet, the rural hinterland of course never had a chance to begin with. But, the pertinent question remains, is the population to be blamed for this calamitous state of affairs? Independently being able to sign forms related to consent, hospital patient registration, interpreting physician’s language & medicine labels, healthcare messages etc. are way too intricate tasks even for city bred educated professionals, which practically means that Health literacy (let alone e-Health) would remain an enormous challenge that would need to be addressed while circumventing this national crisis. Our Patients Advocates give patients and their families a direct, customized assistance in navigating through the Indian healthcare system. A Patient Advocate’s role entails: Helping patients access health care. Educating patients so they can make well-informed healthcare decisions
Our patient advocacy program includes,
- Educating and walking patients through the management of their disease or chronic illnesses in both public and private healthcare settings. As evident in a large country like India, the social determinants of health can vary significantly from patient to patient. Therefore, the role of our patient advocate becomes profound to cater to a patient’s needs and assist with these factors, that may include, where to find treatment to manage their illness, helping them understand the diagnosis of the disease, assisting with healthcare access to overcome their socioeconomic barriers, or helping find additional health services and assisting with procurement of their health care needs.
- Both chronic non-communicable diseases and communicable diseases (like the ongoing Covid-19 pandemic) can be destabilizing for a patient as well their family’s mental/physical well being, we try & provide that support through our ‘patient advocates’ both an emotional & physical support in dealing with their health concerns, illnesses, chronic conditions & actual treatment plan.
- Our services include, attending appointments with a patient. Patients may find a doctor’s appointments as well as prescriptions pretty intimidating, and also difficult to understand. Irrespective of the education background of the patient or an attendant, issues always crop up with respect to differences in language proficiency/understanding or as mentioned before, not having any background whatsoever in health literacy. Our patient advocate’s presence ensures that the patient’s concerns are highlighted and adequately addressed by attending doctors and would be responsible for assisting with scheduling any future appointments as well.
- Out of pocket, expenses form a large chunk in healthcare spending in India and this particular part of healthcare can both be daunting & may completely change the overall well-being of an affected family. Even after having a health insurance, patients/attendants spend sleepless nights in understanding the actual functioning & meaning of ‘cashless heath insurance settlements’. Our Patient Advocates assist them with the actual process and the related financial aspects of healthcare.
- We also support patients & their guardians through establishment of a network of contacts that can further assist them in connecting them to better public/private healthcare facilities, better understanding & actual implementation of cashless support with both public and private health insurance and for the health literates, a better understanding on how to cope with the disease with sound research & empirical evidences on ground.
Our support entails to better patient outreach & engagement, benefits with respect to navigation through the healthcare system & resources, an effective medico-social support both during diagnosis & treatment (even while at home), emotional and mental support for the entire affected family & most importantly, providing a more holistic understanding & management of their healthcare condition.
Finally, very often, a family member serves as de facto patient advocate for a loved one. But more and more, professional Patient Advocates have become indispensable mediators between the patient and an ever-changing, complex healthcare industry in our country. While they are not a healthcare provider or a family member, a Patient Advocate understands the strength & weaknesses of the healthcare system and use this knowledge to help their patients see better outcomes.