Mind the gap – by Andy Broomhead

Patient activation is a concept that interests me a great deal, particularly as it’s something that has made a huge impression on my own management of diabetes over the years.

If you’re not familiar with the concept, patient activation basically refers to the knowledge, skills and confidence that someone has when it comes to managing their own health care.  As people with diabetes, we can probably agree that these things are important, but that the levels of knowledge, confidence and skill can differ wildly from person to person.  Patient activation is crucial for people with long term conditions as they spend a lot of their time managing their own care, and so their outcomes are dependent on their ability to do so.

There are four broad levels of patient activation – at one end there are those who are completely passive in managing their own health and rely solely on receiving care from healthcare professions.  At the other end, there are those who actively seek out information about their health, seek to form a partnership with their team and take full charge of their healthcare.  In the middle you have those transitioning from one end of the spectrum to the other.  Patient activation is at the core of things like Diabetes UK’s 15 Healthcare Essentials – helping to give people with diabetes the knowledge of what care they should receive, and the confidence to ask for it.

Patient Activation Levels
Patient Activation Levels

Whilst the term ‘patient activation’ may not suit everyone (and that’s a discussion for another time), the sentiment itself should be of a lot of interest.  Studies show that the more active or engaged with their healthcare a person is, the more likely they are to have improved outcomes and involved in fewer emergency healthcare episodes.  And surely we’d all like to have more knowledge and confidence when it comes to managing diabetes on a daily basis?

‘Someone like me…’

I think the digital age has made a huge difference to some people with regards their own activation/engagement, and developing the confidence to manage their diabetes more effectively.  From my own experience, wandering on to Twitter at the end of my DAFNE course made a huge difference.  I was trying to fill the void that’d been left after having spent a week in a room full of other people with Type 1 diabetes – the first time in a decade I’d met someone else ‘like me’.   Being able to talk to other people with diabetes, share in their frustrations and successes was hugely important for me and looking at my own outcomes, I can see it’s made a big difference.

Our need (and desire) to become more engaged with our own care will differ from person to person (as do our needs for managing our diabetes) – some people may just be embarking on their journey with diabetes, and need information about how to manage the condition on their own, whilst others may be building on their knowledge with a DAFNE or DESMOND course.  Some people (who would already define themselves as an ‘active’ patient), may be helping to improve the healthcare system that they interact with, or building their own technology to make life easier for themselves.

Is there a big divide between people on the patient activation spectrum?  Are those already engaged, getting more engaged, whilst those who passively receive healthcare get left further behind?  I don’t know, and I suspect few could say with any certainty.  Chances are if you’re even reading this, you’re probably quite active in your healthcare – I suspect you’re in a significant minority if you read diabetes blogs without any vested interest in the subject – but how do we reach people that aren’t engaged?

Reaching people who can’t be reached

I see more and more healthcare organisations (e.g. Clinical Commissioning Groups, Local Health Boards etc.) opening up and trying to understand how patients  want to be involved in care, which is wonderful.  But who does it help?  Do meetings and workshops help re-energise a group already heavily invested in their own care, or do they reach those on the left hand side of the spectrum who need support in getting the confidence to take charge of their own care?  Hopefully it’s both.  Being an active patient isn’t a finite state – it’s something you have to keep working at, and so energising those who are already engaged is important.  But equally, we should ensure that we do our best to bring others along with us.

It’s a complex problem to consider – how do we help those who don’t want to be helped (or don’t know they can be helped)?  And while I don’t have the answers, I think it’s important to remember that our assumptions about diabetes care may be distorted by our experiences and those we interact with.  Things like the artificial pancreas, blanket provision for continuous glucose monitoring on the NHS and insulin pumps for everyone with Type 1 diabetes might be what those at one end of the patient activation scale clamour for (because that’s the natural next step in their journey), but at the other end, there are people who test their glucose maybe twice a day, those who don’t have the knowledge, confidence or desire to wear any kind of technology and those who don’t realise how serious diabetes is.  My more recent experiences of diabetes involve insulin pump therapy and an average of seven glucose tests a day.  The next steps for me are wildly different to someone who doesn’t see the benefit of testing at all.

Decisions are made by those who show up – so goes the saying.  How do we make sure that those who show up represent everyone?  Patient activation on an individual level is about equipping ourselves to manage our own care as best we can.  As a wider community (people with diabetes, campaigners, healthcare professionals, charities…) who understand the benefits of being active in care, I think we have a responsibility to mind the gap between the two ends of the spectrum.  We need to do better at reaching those people it can be more challenging to talk to.  We don’t have to shower them with technology or put them in an auditorium to tell their story to make them an activate patient.  Everyone’s journey has to start somewhere – maybe we can start bridging that gap by remembering where it began for us.

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