Around The Globe

Patient Engagement in India:
Challenging Yet Worthwhile Road Ahead

Veena Jaguste


n 1996, the US Center for Advancing Health elegantly defined patient engagement as “actions individuals must take to obtain greatest benefit from the healthcare services available to them.”

Patient engagement has several dimensions. We commonly consider a patient engaged if he/she meticulously follows the treatment plan, including medications and lifestyle modifications. Such a patient is compliant, but is essentially following their doctor’s advice. True engagement goes beyond compliance. It includes the patient becoming knowledgeable and informed about their illness, voicing their preferences on treatment options, choosing a treatment option, and expressing their expectations on the treatment outcome.

With a fully engaged patient, it is possible to build a synergistic and ongoing relationship in which the healthcare provider offers the best care, but the patient also accepts their share of responsibility for the best possible outcome.

India is a complex subcontinent with diversity of languages, lifestyles, beliefs, and cultures. We struggle with additional challenges such as uneven healthcare access, a focus shifting toward tertiary and/or speciality care, poor affordability (healthcare expenditures are 70 percent out of pocket), and suboptimal meaningful literacy. Healthcare decision making tends to be at the collective rather than the individual level, with family and friends playing a significant role (and many times giving conflicting advice). There is a tendency to quickly trust experience and/or recommendations based on hearsay from a relative or a friend about a treatment (which are not always allopathy-based) instead of considering fact-based evidence offered by modern medicine to make this decision. Social stigma associated with many illnesses also hinders full engagement. Lack of awareness about the “totality principles” of managing illness leads to patients becoming “medicine-centric” – not following their full treatment plan (diet, exercise, and complete medication compliance), resulting in suboptimal outcomes, discontinuation, switch-over to other therapies, and a poor overall experience.

This creates a vicious cycle of distrust and further disengagement, which can lead to suboptimal or negative outcomes, preventable illnesses, complications, avoidable hospitalizations, or even death.

But the benefit of true patient engagement is enormous. It drives value-based patient care and outcomes at lower cost, leading to positive experiences and satisfaction. The engaged patient–doctor partnership leads to a healthcare plan customized to the patient’s specific needs. It enhances the trust between them, leading to continuity of care.

Patient engagement plays a key role in individual as well as population health. While there are many challenges in India, several simple, practical approaches can help ensure better patient engagement.

Change the physician’s approach: Changing the traditional paternalistic approach from “I’ll decide what is best for the patient because I have the required knowledge, experience and skill” to a consistent partnership is the first step in the right direction. It involves enhancing communication skills to explain simply to the patient/family about the illness and the pros/cons of available treatment options. Developing empathetic listening skills for conversations about the patient’s expectations for outcomes and the difficulties they may experience with the proposed treatment will help allay the patient’s anxiety and fear. Two-way communication as a process should continue at every touch point during treatment.

The major difficulty with this approach is the paucity of time Indian healthcare providers have due to the huge gap between demand and supply plus suboptimum availability of healthcare facilities in smaller towns and villages. But these can be overcome by strengthening and scaling up primary healthcare, both public and private. Family physicians can support patient education and follow-up, and answer their queries as they are nearer to, and have stronger relationships with, the patients.

For illnesses requiring speciality care, engaging the services of interns and paramedical staff can help in effective patient connection, follow-up, and communication.

Healthcare providers retired from active practice, such as physicians or paramedical staff, can help upgrade the skills of primary healthcare physicians and rural doctors, lending their valuable hand in patient education and two-way communication.

The Indian government, with the right messaging and education, has successfully created large-scale grassroot-level awareness to reduce maternal and infant mortality. Private healthcare providers (who deliver 70 percent of healthcare in India) should engage more actively in creating an environment that promotes and encourages patient engagement.

Support patients and their families: While more patients and their families in India try to get better informed using tools such as the internet (now widely available), active engagement is still a new concept. Physicians should guide their patients towards impartial, authentic information sources, answer their queries, and not perceive inquisitive patients as difficult or uncooperative. This will help their patients move away from unverified hearsay, experience-driven decision making, and towards a more rational, science-based process. We have observed in clinical trial settings how patient-to-patient communication and experience-sharing in an open forum is very useful.

Map the patient journey: To truly understand and find solutions to patient disengagement, it is important to map the patient journey in a structured manner, including relevant medical details, knowledge of local disease epidemiology, socio-cultural milieu, and economic and/or logistical issues.

Integrate and use and tools and technology: The deep penetration of mobile technology and internet in India can be leveraged to support patients with medication and visit reminders, remote monitoring of data collected through wearables, built-in alerts in response to an adverse event or worsening of illness, personalized motivating messages, and so on. Develop patient portals and apps that provide information in the local language. Encourage sharing experiences through online patient portals.

Develop feedback system: Formal feedback in which the patient assesses their physician on overall quality of care, outcome and responsiveness to their needs and preferences–the total experience–will help identify gaps and fine-tune this holistic approach, and help provide meaningful outcomes that matter the most to the patient.

Moving towards comprehensive patient engagement will not only reduce the enormous burden on the healthcare system in India, but also lead to better, long-lasting positive health outcomes. This will help the people of India people live healthy, active lives and realize their full potential. There may be challenges, but focusing on true patient engagement is a worthwhile road ahead in India!