As part of a new series to help the patient engagement community get to know one another, we asked Kate Sonpal, Senior Public Involvement Manager at INVOLVE in the UK, to discuss how she is working to move patients centre-stage in healthcare
INVOLVE has been active for more than two decades: how has the patient engagement/involvement landscape changed in that time?
INVOLVE (which first existed as People in Research) was originally the only organisation that was pushing for public involvement in health and social care research and a lot has been achieved since it was established in 1996.
What are some of the highlights?
In 2006, INVOLVE became aligned with NIHR which was the first integrated health system to make public involvement a requirement of funding. The publication of Going the Extra Mile in 2015 changed the landscape of public involvement considerably and put an increased focus on diversity and inclusion, regional networking and co-production.
What are the biggest challenges to widespread adoption of PE? How can these be addressed?
Lack of knowledge! Alongside this is underestimation of what the public can contribute to research. INVOLVE have just launched their learning and development website which contains public involvement induction booklets and Top Tips. I also think that some researchers perceive that involving the public takes up too much time – they need to be made more aware of how this investment pays off!
What are INVOLVE’s key PE initiatives?
We currently have three national leadership areas: learning and development, diversity and inclusion and co-production.
I’m delighted to say that the co-production guidance has recently been launched. We have co-led the PPI Standards Development partnership and the six standards that have been developed are to be piloted by different patient groups and parts of the research system this year. INVOLVE have also developed an international network which launched last year. Additionally, we are now starting work on involving children and young people, and co-applicants.
How has working with PFMD helped reach your PE goals?
It has been a pleasure to work with PFMD on our pledge campaign. Chi Pakarinen came to the INVOLVE Conference “INVOLVE at 21” in November 2017 where we launched the campaign, and she was able to capture numerous people’s pledges on the day. PFMD helped coordinate and execute the pledge campaign and this was crucial in achieving so may pledges.
In addition to the pledge campaign, working in partnership with PFMD has ensured that both our work programme and PFMD’s are aligned, the learning is shared and networks have grown.
The national standards for public involvement in research that we have developed in partnership across the UK have been incorporated into the development of the Public Engagement Quality Guidance Tool. The tool also has the potential to enable individuals and groups to evidence how they are meeting the standards, it has been also suggested that the tool would provide the basis around which a training provision could be built.
How many pledges did you receive as part of your Pledge to Patients campaign?
We received 276 pledges! These came from around the world and were from researchers, patients, the public and public involvement leads. We were delighted with this large and varied response which demonstrates how important public involvement is to people.
Tell us how you used social media to encourage your members to commit to making a pledge?
INVOLVE and PFMD ran a Twitter campaign to encourage people to pledge. This included videoing Caroline Barker (PPI Officer at Southampton NIHR Clinical Research Facility and Biomedical Research Centre) about what her pledges are and why she made them. I also wrote my first blog about the pledge campaign!
Did any recurring themes emerge from these hundreds of pledges? Were there any pledges that stood out for you?
One pledge that stood out in particular was this one:
“I commit to ensuring I communicate appropriately and as an equal with patients and members of the public, and I am always open for others to communicate with me in ways that are most comfortable for them.”
This seems to capture the essence of good communication.
What are your priorities for the year ahead?
INVOLVE is about to launch its new strategy this year, and as well as our National Leadership Areas we will be focusing on continuing to develop frameworks to support involvement, building partnerships and investing in our people and systems to improve and advance public involvement. We will also be starting to plan for our next conference in 2019!
P.S. Do you believe patient engagement can change the face of the healthcare system? If the answer is yes, than you can also contribute to this cultural change. Click here to show your commitment and become part of the movement.