Getting involved in a PSP workshop: from both sides of the window

At Diabetes UK we’re currently working with the James Lind Alliance to find the Top 10 priorities for Type 2 diabetes research. It’s been an exciting and sometimes exhausting process, and as the final list has drawn closer we’ve begun to think about the big day: the final workshop.

When planning an event like this, you can talk through aspects as much as possible and hope you’ve got all the right boxes ticked, but nothing beats experience itself. This is why we jumped at the chance to take part in the JLA Contraception PSP workshop, coordinated by the Faculty of Sexual and Reproductive Health, to find the Top 10 priorities for contraceptive care research. Seeing a PSP workshop in action would have been a great opportunity, but actually taking part in one (as a user of contraception) wasn’t something I’d thought possible.

Taking part in something like this is incredibly special and personal: you’re there to share your story and ensure that the ‘patient view’ is heard. I was surrounded by service users, people from organisations that support people using contraception, and healthcare professionals involved in contraceptive care. But the contraception PSP was particularly special, because so many healthcare professionals also use contraception. While there are instances where healthcare professionals are also living with the condition that a PSP is focusing on, it’s rare for quite so many to cross over!

There was a really special feeling in the room; an anticipation to get hold of the priorities we were there to discuss and find out each other’s motivations for taking part. What do you think is important when it comes to contraception research? Are you surprised by what has come through the process – what will be the impact of today?

As the day went on, it was clear that there were many different and passionate views in the room. Importantly, they were all respected and given consideration. Clearly all of the priorities in front of us – 29 in total – were important, but we were there to put them in order from 1 to 29.

We also needed to consider the prioritisation that had come before us: everyone who took part in the interim survey ranked their priorities and we didn’t want to lose their views. What was really interesting was the difference between the three groups. While some difference between the ‘service user’ and healthcare professional views is expected, the healthcare professionals who also use contraception had a different priority order as well. Having that experience of both receiving and providing contraceptive care appeared to give respondents a different insight.

I felt really privileged to be taking part in the discussions, given my involvement in carrying out a separate PSP and seeing it all from the other side. I knew the processes they’d gone through to reach this day, the hard decisions they will have had to make along the way and the process JLA use to determine how priorities are ranked and how to decide if a research question has enough evidence behind it to be considered answered.

The morning was spent in smaller groups, discussing the 29 priorities and putting them into an order we felt was appropriate. We did this twice, stopping halfway through to bring together the views of all groups and then look again at an ‘average’ prioritisation order. Then in the afternoon, it was time to come together and collectively decide if the order was right. Having collective agreement at the end of that session was really exciting – it felt like we’d all been part of something special.

Of course the real task now is getting those priorities answered, but seeing how involved healthcare professionals and people affected by research are in the process gave me a lot of hope. Those priorities represent the views of many people with a whole host of experiences, which means that the results of research addressing them has a real opportunity to make a difference to people’s lives.

Overall, being a part of this day left me feeling really uplifted by the JLA process for identifying research priorities – and even more excited about the outcomes of our Type 2 diabetes PSP workshop in July.

Emily Burns is Research Communications Manager at Diabetes UK, where the organisation is currently working to identify the Top 10 research priorities for Type 2 diabetes.

You can see the Contraception PSP's Top 10 here.