Dr Sagar Jilka on patient and public involvement in research, number crunching and picnics

Dr Sagar Jilka is an academic researcher and Patient and Public Involvement (PPI) coordinator for the NIHR Maudsley BRC. He manages the patient advisory groups and facilitates involvement in activities for researchers and the public.

Can you give a brief overview of your career?

My undergraduate degree was in Music Technology and Psychology at Keele University. From there I focused more on Neuroscience. I did an MRes in Neuroscience at the University of Birmingham and PhD in Neuroscience at Imperial. I then did a postdoc with Lord Darzi in health policy and then had a bit of change and worked as a data scientist in a start-up betting before coming to the IoPPN in May 2017.

What are you most proud of?

I’m most proud of growing our patient involvement activities and our advisory groups and seeing the buzz we create from it. Every time I engage with patients about the research we're doing at the BRC, and I see their excitement and intrigue, it’s a really good feeling. I'm also proud of how much our researchers value user involvement - from senior academics to pre-doctoral academics -  it’s very much central to their research.

How did you get interested in patient involvement?

A lot of the research I had done previously purely came from ‘an academic brain,’ and I always felt that perhaps a lot of my research participants didn't really benefit from it.

My research centres around anything where patient and carer views and perceptions are needed in mental health, and those voices are embedded in our research. This can range from views on say a novel treatment, such as ketamine for depression, or on research participation, such as Consent 4 Contact, or even on clinical data sharing.

Why should patients, carers, and the public work with us at the BRC?

Participation won’t magically cure mental health, but it will really provide the building blocks. It's a piece of a puzzle that will really help us better our research.

While there might not a real tangible, direct benefit for patients themselves in terms of a novel treatment or anything like that, there are lots of other benefits of getting involved in research.

For example, advisory groups provide a really warm, open space for people in a similar position to them to talk about their experiences. A lot of our members feel it's a bit of a social for them, they're in a room with likeminded people who have lived experiences who they can connect with on experiences, perspective, and emotionally. They get all the research training and then they apply all their experiences to a research study. That’s when the research becomes really meaningful.

Unfortunately often the carer voice is overlooked, but carers are as valuable to our research. Right now we're doing a study with the Dementia research group and the MALADY group, to identify dementia misconceptions on social media, and the participants are all carers. 

The insight they give is significantly shaping our research because people caring for somebody with dementia will often have to answer questions from friends, family or their local community. And the questions can range from things like what's the difference between Alzheimer's disease and dementia?

We're very conscious of the importance in the carers voice and we try to work hard to make sure we include them.

What would you say to a patient or a carer looking to get involved in research?

Please get involved!

There's different ways to get involved. You can join advisory groups, not necessarily ours but there are plenty of others, the SLaM involvement register, study steering groups and of course directly being a participant in research. This could be either in person through interviews, online via surveys or puzzles or tests, in hospitals in clinical trials.

We need a very diverse sample that's representative of the local community. And the only way we're going to get that is by having people from the local community.

Any advice for researchers in working with patients and public in shaping research?

Speak to as many different people with lived experience as you can and take their opinions as you would your academic supervisor.

In my two and a half years working here, when you take the advice of carers and patients, everything else becomes a lot easier and the quality of your study gets better.

I believe fundamentally the quality of your research will be better. You've got the opinions of those people that would potentially take part in your study from the start.

It means you’ve got your dos and don'ts sorted right from the start rather than learning on the project. They've already said do this and don't do that. So you won’t use the wrong terminology, or have a patient complain about it halfway through your study.

What do you enjoy most about working with patients and the public?

I get a lot of insight about a variety of research from a patient's perspective - hearing what patients have to say about the work that I'm doing and also the work that's going on here. 

It really helps me plan my own research agenda and plans going forward, because I know that there are certain things I should say or shouldn't say, or dos and don'ts, because I've had them when patients talk about it.

I really love research. I love crunching numbers.

Where did your love of crunching numbers come from?

I've always been a very curious boy and over the years, I realize that the fundamental truth comes from numbers. I feel with numbers you get a truth or you get a definitive understanding of a concept.

What does an average working day look like for you?

It's very varied, and what I mean by that is, I'll be doing research, for example, in the morning, and that might include data analysis, managing research staff or writing an ethics application, and then in the afternoon I might be facilitating an advisory group, then I'll have to switch back into research mode.

Quickfire questions 

Aside from colleagues, anything you miss from working in Denmark Hill?

I miss Fish and Chip Fridays in the IoPPN canteen.

Who is your science hero?

Alan Turing.

What has been your favourite book, film or TV series in lockdown?

The Explained series on Netflix. The ‘All or Nothing’ documentaries on Amazon Prime - I'm currently watching the Tottenham Hotspur series!

What's your best new discovery of lockdown?

I've discovered loads of local parks and how to picnic. I’ve bought a picnic basket and a picnic blanket and there's so many green spaces in London. We’ve been pitching up and enjoying having a picnic.

For more information about our Patients and Public engagement Cluster

Visit our webpages: www.maudsleybrc.nihr.ac.uk/patients-public/