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The human challenge behind patient engagement

Paul Hutchings, Associate Director in our Pharma & Life Sciences team, considers the pitfalls and the opportunities that lie in patient engagement.

Mid-way through PM Society’s Patient Engagement seminar last Thursday, it became clear there was difference in opinion around what ‘patient engagement’ is and how to say you have achieved it. Being such a “hot topic” – how can it be that this is not more set in stone?

Having a diverse range of people at the seminar – pharma and agencies through to patient groups and patients themselves – was actually quite informative on this matter.

We are all “patients” at some point in our lives – that is a given. But whether we are temporarily unwell or have a mid- to long-term illness, we are still human underneath it all. And as humans we have different traits, views and feelings about how to manage or improve our own health as well as the health of others.

The term patient covers a huge variety of individuals across different situations. Knowing how to focus in on such a broad spectrum is a challenge in itself.

However, when you couple this challenge with the fact that ‘engagement’ can mean a multitude of things from being a one-off email to being life-long 1-2-1 support or anywhere in the middle, it’s hardly surprising that patient engagement can be played out in so many different ways.

During the seminar, we heard about a campaign that engaged patients from start to finish. Patients were brought in to help create a new health data tracking system. Once launched, patients inputted to it and their healthcare professional could check against progress and provide appropriate support.

This example is one of co-creation that engaged with the patient throughout the programme. The results were impressive! But they came with a lot of invested time and assumingly budget.

We then heard a point raised by a patient, a man in his late forties or early fifties with Parkinson’s disease who sat in the audience a few seats from me. He spoke openly about his experiences with patient support and his take was that it is a little ‘hit and miss’ when it comes to the NHS and pharma engaging with him. The support he receives was unreliable and inconsistent with it sometimes stopping abruptly.

While only n=1, his views are not a new concept. And with my professional hat on, his views are understandable. Priorities (within NHS and pharma) will change, budgets will be refocused, and so maintaining a level of patient engagement certainly in the longer term isn’t without some sizable ethical and functional challenges. But that doesn’t mean we can’t plan ahead.

With regards to health, we’ll never fully know what all people/patients want, nor will we necessarily be in a position to tailor all health services to their specific needs (even with emerging AI!). So setting realistic goals, that are based on insight from a range of patients that we’d like to reach, is sound and ethical.

One practical thing we should all be doing is ensuring that a clear campaign or programme exit strategy is in place from the get-go. This will lessen the impact that a campaign or support programme ending may have on those they aim to help. Like the man at the seminar.