Patient advocacy, a process that helps patients get the information and support they need to make decisions about their healthcare is gaining currency, especially in specialities like oncology, say experts, even though it remains in its infancy in India.
Dr Neil M. Iyengar, a breast medical oncologist at Memorial Sloan Kettering Cancer Center, said, “In the past, cancer treatment was often seen as a decision made exclusively by the oncologist, with the patient having limited involvement. However, we are now recognising the crucial role patients play in their own healthcare journey.”
Iyengar explained that such active involvement empowered patients to consider all available treatment options, the associated risks, and the potential outcomes based on their personal values and preferences. This approach not only improves the quality of care but also nurtures a partnership that enhances the patient’s sense of control and autonomy.
For cancer patients faced with uncertainty and fear, having a voice in their treatment can be a source of comfort and reassurance. It also helps build trust and communication between the physician and the patient.
The model of care that the medical world is moving towards prioritises patient-centred approaches and ensures that every treatment plan is as unique as the individual it serves.
Globally, patient advocacy and support groups have helped advance science and patient care, however, this is an unmet need in India.
In 2017, Rise To Survive, a support group for patients with ALK (anaplastic lymphoma kinase) -positive lung cancer, was created in India. In 2018, a few advocates, patients with lung cancer, caregivers, and survivors came together to form, the “Lung Connect India Foundation”–a support group, aimed at empowering patients with lung cancer and their families, through information, resources, and support.
Also Read | Patient advocacy and support groups in India: focus on lung cancer
Dr Robin Mendelsohn, MD, Gastroenterologist, Memorial Sloan Kettering Cancer Center said that patient advocacy was a pivotal shift in healthcare.
“Patients regularly want to be a part of the decision process. This collaborative approach allows specialists to make a plan that is more personalised, taking into account individual preferences and circumstances”, he said.
When patients actively participate in discussions about their diagnosis and treatment options, they are not only more satisfied with the care they receive but are also more likely to adhere to the plan. Shared decision-making empowers patients to choose what works best for them, based on their lifestyle, values, and personal goals.
The movement towards patient-centered care is also a significant milestone in the advancement of medical practice, ensuring that not just the disease, but the person as a whole is treated.
