Patient Engagement – by Andy Broomhead
What I’ve noticed more and more over the past few years of living with diabetes is that the more people engage (with their own diabetes, with their healthcare team and with each other), the more they seem able to manage their diabetes. I also think that you see the more healthcare professionals engage with people with diabetes, the more they understand what goes on outside a clinic room.
A two-way conversation
So what does patient engagement mean? Well to me (and, as ever, this is just what I think), it’s about an open and honest two-way conversation about how diabetes care should work. Whether that’s at an individual level between me and my team, on a wider scale (considering how care should apply within a local Clinical Commissioning Group (CCG) area), or even at a national level, looking at how treatment guidelines should be changed. It seems obvious to us as people with diabetes, but putting the patient at the centre of decisions relating to our care is incredibly important.
For my day job, I do a lot of work that involves changing processes that will be used by thousands of customers. It’s (relatively) easy to understand how to make them more efficient for a business, but the real impact won’t be felt by people in an office, but by customers day in day out. To make sure that what we’re doing isn’t going to be to a customer’s detriment, we have a Voice of the Customer role where someone specifically looks at direct customer impact and helps us shape what we do to make sure it’s the best it can be for those people most central to the change.
I think we’re starting to see that more in diabetes care. Healthcare professionals are using different language to provoke different, more meaningful conversations with us as patients which can only be a good thing. I think local bodies such as CCGs are listening more and more to patient feedback and looking to understand what’s important to us as people with diabetes. National bodies like NICE have patient representatives when looking at guidelines for managing diabetes too.
I suppose the downside is, like with most things, the degree to which this is all happening varies wildly depending on where you live. Not every clinician is ready to move with the times (though I think they’re now in the minority), and not every local body has specialist diabetes working groups that involve patients, though I know some do exist. This is where the importance of a two-way conversation comes in. Whilst we should rightly expect that the patient voice should be heard loud and clear by default, if it isn’t, I think we have a duty to push for it. By contacting our hospital trusts, CCGs and health boards, we can start the ball rolling on patient engagement, and get the things that matter to us out in the open for discussion. It’s not always an easy task, but it’s a worthwhile one.
There may not be quick fixes and easy solutions, and there might be reasons why changes can’t be made. If we expect our healthcare professionals to be engaged with our views as patients, we should also be prepared to engage with them and understand the constraints and challenges they face when delivering care.
Local diabetes care
I started out by mentioning a little bit of vested interest in this subject so I’ll finish by explaining what I mean. At the end of May, we’re running a Patient Engagement Event in Sheffield to give people with diabetes the opportunity to meet others in the same position. It also gives them an opportunity to mix with local healthcare specialists, hear about how local care works and to put questions to that specialist panel. We’re expecting over 100 people and I hope everyone comes away feeling more connected to their local diabetes care, and more connected to other people who live with diabetes.
We have to remember that it’s a two-way street when it comes to engagement and understanding and hopefully, with everyone involved committed to working together, we have the opportunity to make changes to diabetes care across the country.