Modern healthcare system is very complex, and many patients struggle to obtain, process, communicate, and understand even basic health information and services. Many patients lack health literacy, or a true understanding of their medical conditions and find it difficult to follow instructions on how to take care for themselves or to adhere to treatment regimens. Above all, due to paucity of time, many practitioners fail to provide the information that patients need to make the best decisions about their own care and treatment.
‘Patient engagement’ is often used as an umbrella term to cover the multiplicity of interactions that patients have with their healthcare system. Terms such as ‘patient empowerment,’ ‘patient participation’ and ‘patient involvement’ are sometimes substituted for the term ‘patient engagement.
“Patient activation” refers to a patient’s knowledge, skills, ability, and willingness to manage his or her own health and care. On the other hand, “Patient engagement” is a broader concept that combines patient activation with interventions designed to increase active involvement and promote positive patient behavior, such as obtaining preventive care or exercising regularly.
Patients’ participation in decision making process in healthcare industry has become a political necessity in many countries and healthcare systems around the world. Literature reveals that participation of patients in healthcare has been associated with improved treatment outcomes and quality of life. With enhanced patient participation and considering patients as equal partners in healthcare decision making, people are encouraged to actively participate in their own treatment process and follow their treatment plan. Furthermore, a growing body of evidence demonstrates that patients who are more actively involved in their health care experience not only show better health outcomes, but also incur lower costs. As a result, many public and private health care organizations are employing strategies to engage patients, by educating them about their conditions and involving them directly in making decisions about their care.
In India too, there is an increasing awareness about this concept. 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 in 2015. 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-centered health system in India that provides timely access to the best available interventions for prevention, diagnosis, treatment and care. The action plan includes: 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-centered national and state healthcare system.
Although the concept of patient engagement promises to deliver significant value for health care providers, patients and other health care stakeholders, many gaps still exist for patient engagement to make an impact at large. This perspective towards engagement may help policy makers in setting research and funding agendas that can really improve the quality, relevance, ethical dimensions and implementation of the research and ensure that research resources address the issues which are most important to patients affected by health care problems.
Furthermore, this approach can help in drafting guidelines for planning interventions to foster patient engagement in a way, that is really fine-tuned with the specific phase of the patient’s experience. It may also contribute to understanding the real value of patients being involved in the care process according to a patient-centered approach.
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