Why Patient Engagement is a goal, not a starting point


For nearly a decade now, patient engagement has been the hero of better health outcomes. Why? Because a body of evidence has shown that patients that are more actively involved in their healthcare experience enjoy better health outcomes as a result, and incur lower costs at the same time. Everybody wins. So - how do you create patient engagement? And just how much 'engagement' is required to make a difference? One suggestion is to create a Patient Activation Measure (PAM) which seeks to score the knowledge, willingness, skills and ability of a patient to manage their own health care.

Yet, in my 15 years of running patient-centred Lifelines research, I've come to the conclusion that this approach has a flaw, which is limiting its success. The premise of patient engagement depends upon first achieving a certain degree of health literacy - that the patient needs to understand the facts and risks before being able to make an informed choice.

Instead, I believe that the starting point of creating patient engagement is for healthcare professionals to ascertain a degree of 'life literacy'  - that is, to understand what motivates and inspires that individual patient...to live, to achieve, to belong. It is not a complicated process, but it does require that, before expecting a patient to engage with their health, clinicians need to listen to what their patient cares about. In their own words.

Does that sound too vague? Too soft and fluffy? Then invest 5 minutes in watching this video - of a cancer survivor, now living with multiple sclerosis and a complex history of abuse and losing 9 of her 12 children. By the end of the 5 minutes, it becomes clear not just what she has gone through in the past, but what inspires her in the future. It provides the essence of how to 'connect' with her.


Since 2009, the English National Health Service (NHS) began collecting patient-reported outcome measures (PROMs) for health procedures. The idea was to ask patients about their health from their point of view, and in so doing, help doctors 'tune-in' to what patients value. This in turn would encourage patients to be more actively involved and committed to their healthcare.

PROMs is undoubtedly a positive move, and yet it lacks the open-ended invitation for patients to describe their passion, their motivation - what drives them.

By starting with patient inspiration, perhaps not as a measure, but simply as a recognition of their dignity, the healthcare industry would have a better foundation for achieving the engagement with patients that serves us all well.

Video Credit: Nic Askew, Soul Biographies