Ian's blog: Patient engagement - power to the people

Patient engagement has been a feature of healthcare for some time, particularly in specialist areas such as diabetes, cancer, mental health, and HIV. There’s clear evidence of benefits, and according to the British Medical Association (BMA), “engaged and involved patients are key to achieving a healthcare system that is responsive to their needs and values.” But what exactly is patient engagement? And how can patients make a significant contribution to healthcare? 

An important part of patient engagement is patient empowerment. This involves several key elements, such as a clear understanding of a specific condition (e.g., a disease), awareness of the patient’s role (e.g., how individuals can participate in planning healthcare and promoting better care delivery), and mechanisms for their voice to be heard (e.g., patient participation groups in medical practices, or active forums of affected people). Many patients underestimate the power of their voice, yet it’s important to note that as people we are all experts in our own experience of health and disease. As ‘expert patients’, our lived experience is essential to share and can have a positive impact.

Patient engagement and participation are important components of patient empowerment. One example of this in practice is in the context of people living with HIV and their treatment. In this case, access to available treatments and adherence to sometimes complex prescription regimes were made possible through regular and detailed feedback to practitioners from the patients themselves. This was often through advocacy groups (such as the European AIDS Treatment Group) or other organisations focusing on care quality, such as the UK’s National AIDS Trust, which also worked with patient groups to track patient experiences of stigma and discrimination. 

Other groups, for example in mental health, have also played a vital role in addressing how services are delivered and ways that treatment and care can be improved. What’s common to all these groups is that patients feel confident about sharing their experiences, and they have access to mechanisms that amplify their voices. 

Meaningful patient engagement enables staff to better understand, and value patient lived experiences, allowing patients to be partners in certain areas of decision-making. Without this engagement, there is limited awareness of the lives of patients, reinforcing a top-down approach to care delivery, contrary to notions of effective self-care and public health.

Finally, patient engagement must never be tokenistic. Simply informing patients of what’s going on isn’t enough. There must be meaningful participation by patients in the planning of care delivery and in partnership with care providers. This is vital for any health system. As a recent paper on patient inclusion in HIV care planning notes, “there is increasing recognition of the need for health system delivery of people-centred services to support consistent, high levels of engagement as a route to maintaining treatment success.” 

This of course applies to all healthcare. For the World Health Organisation, “patient engagement is critical to shaping the way forward. It has the potential to save lives through safety and quality improvements informed by patient experience.”

During Patient Participation Awareness Week 2025, let’s seek ways to ensure the patient voice is clearly heard amid the busyness of healthcare delivery, especially in primary care – it’s the only way healthcare professionals will ever know what we think!