Karen Williams is an integral member of the NIHR ARC North Thames, lending her professional and personal expertise to help develop our patient and public involvement (PPI) strategy and inform our mental health research. We talk to Karen about her career to date working with vulnerable communities, the journey that led to her role as an ARC public contributor, and her advice for anyone who wants to get involved in research.
What have you been up to in your role so far as an ARC public contributor?
I was initially invited to provide feedback for a project looking at cancer care pathways. People were helpful, and I was well informed about what was required of me and by when. This was the first time I’ve been involved in research as a member of the public, and this clarity was vital in helping me to better understand the ARC and how my role fitted within it. I found the whole process very constructive and enjoyable. So that was the starting point for me.
Then I became involved in the development of the ARC’s patient and public involvement and engagement strategy. A number of different people with different perspectives were sitting round the (Zoom) table, and everyone was so respectful of others’ opinion, of my opinion, and it felt truly inclusive. We ended up making a significant contribution to what the strategy should looks like and what it should include. It was a great experience – everyone wanted to get it right and people felt heard.
The latest piece of work I’ve been involved in is a PhD project, which focuses on digital exclusion, particularly within vulnerable communities. This caught my attention as my own career has focused on working with vulnerable people. I’m looking forward to continuing to work with the ARC and exploring other opportunities to get involved.
What motivated you to become involved in research?
My MSc was in methods of research and evaluation so I’ve always found value in evidence-based research. I started as a researcher many years ago with the probation service, looking at domestic violence. It was a pilot project for the Home Office, working with male offenders. We brought together a group of men who were genuinely ready and willing to change and aimed to challenge their thinking and behaviour in a supportive setting. It’s quite general practice now, but it was quite ground-breaking at the time. I felt very privileged to be involved in that.
I got my first taste of how research can really make a positive impact on people’s lives. From there, I moved into working with people who were misusing drugs as the drug strategy lead for the City of Manchester. I then worked for the Northwest, making sure that there were appropriate services for young people who were misusing substances, and then London working for a central government department on serious violent crime.
My thinking across my whole career has always focused on ‘what is the evidence telling me?’. I had to work with lots of different people - commissioners, frontline services, members of the community – to build a collective picture that influences what happens in a local area, and this has major implications for communities. My research training proved invaluable for this work.
So that’s what brought me to the ARC. I saw there was an opportunity to be involved and I put my name down, and I was fortunate to become involved. I am a member of the community and I have lived experience, and I think, alongside my professional background, I can really help. The other thing to mention is that a few years ago a close family member developed dementia so I took a step back from my career to be their carer. That understanding of being a carer, and of dementia and its impact, that’s something I think I can bring to the table whenever we talk about research for mental health or vulnerable people.
What have you found most valuable in being a public contributor?
My masters degree was tailored for research in an applied setting which taught me that there is a place for academic research, but also for a place for other perspectives that ensure research benefits people in real-life settings. The work of the ARC reflects that in bringing people like me into the discussion. What we’re collectively doing can influence policy, practice and people’s lives, and it’s hugely valuable to be a part of it.
What have been the main challenges?
I haven’t experienced any particular challenges with my involvement yet, but there are definitely challenges in PPI more broadly.
I think digital exclusion is a concern. Quality and inclusion are, from what I’ve seen, key to the ARC’s way of working so we must be careful to not inadvertently exclude people. The problem with digital methods is that not everyone has access to, or is comfortable with, using it. I’ve certainly lost the participation of a colleague in mental health because he can’t do Zoom, and I miss his contributions. Digital exclusion has become even more prevalent in the pandemic. Going forward we need to ensure that we consider people’s access needs and ways of interacting, so that all voices are heard.
That said, I think the opportunities far outweigh the challenges. In my experience, when there are challenges, they have been met constructively because people are having honest conversations. In our ARC PPI meetings, people are willing to say ‘I’m not particularly happy with that way of doing things’ and that’s a good sign. It also helps the work to evolve so I think we should embrace challenge to get the most value from our work.
What are your future plans for being involved in research?
It’s early days for me in this role so we’ll see what happens, but I feel mental health is where I would fit most comfortably. All of my work to date, as well as my role as a dementia carer, all of this impacts on a person’s mental health. I’m a governor for an NHS Mental Health Foundation Trust and it’s where my expertise lies.
I’m also concerned about how the pandemic and being in lockdown for so long has affected people. We’re not sure yet of what the long-term impacts on mental health will be. That said, there is a lot of overlap with my interests and other areas of health research, but that’s something to be explored.
What would your advice be for someone who wants to get involved in research?
I would say just do it! I am yet to ask to participate in a piece of research and someone say to me, no you can’t. There is a genuine openness and receptivity to what the public think and feel, and that informs the work.
If you’re interested in getting involved in research, look at the ARC and the NIHR websites and check if there are opportunities. If there’s something you don’t understand, just call them and have a chat. I wouldn’t want people to look at the ARC website and think I don’t know anything about research, I don’t have a research background, I can’t offer anything. Remember that your experience and expertise is important and valued. It’s a really rich, rewarding journey and you meet some fantastic people apart from anything else.
What would you say to a researcher who wants to work with the public?
Listen to understand, not listen to respond is one of the things that I learnt very early on in my career. If you ask people, they will tell you and it’s much more productive to engage with people when you really listen.
That equal seat around the table is so important. Whether you bring expertise from academic research or lived experience, you have something to contribute and it makes the research and its impact so much richer. The subject matter, the influence it has over people’s health and lives, is far too important to approach it any other way.
If you are a member of the public, patient or service-user and would like to learn more about how you can get involved in ARC North Thames research please visit our patient and public involvement (PPI) page. You can also find a range of opportunities to be part of NIHR research by visiting their Be Part of Research website.