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Anwar’s perspective: What is it like to be involved in research?

At the Agora Digital Centre, we always shout about the importance and value of involving patients and the public in health and social care research. But how do patients and the public view their involvement experiences? How have they been involved in research? What have they gained from being involved? This led us to asking Alison and Anwar, two of the public contributors involved in the development of Agora Digital Centre’s services, about their experiences of getting and being involved in research.   

In this blog we focus on Anwar and his experiences. Anwar Gariban is a lay reviewer at the Research Design Service South East (National Institute for Health and Care Research), a patient and public member at the British Heart Foundation-Data Science Centre and is involved in other health research projects as a patient and public member.

Why did you get involved in health and social care research?

After retiring and enjoying some rest and leisure, I wanted to do something more meaningful. I saw a flyer at my local library that invited people to share their views and experiences of health and social care services for research purposes. I had no idea that lay people could be involved in research studies. I was curious about how researchers could collaborate with patients and the public to support them to plan their studies. I enquired into the role and discovered that research could benefit from the input and perspectives of patients and the public. I also learned that the involvement of patients and the public is crucial for ensuring that research are more patient focussed and the outcomes are more relevant to their needs. I also have lived experience and understand the medical needs of friends and family so I felt I could get involved and make a difference.

What types of role or roles have you had in research?

I have been involved in various roles and projects as a patient and public contributor. In my role as a lay reviewer, I evaluate research proposals and give independent and objectives advice based on my experience. I also participate in a pre-funding panel that consists of a multidisciplinary team. The panel’s function is to assess research proposals before they are submitted for formal funding and to advise researchers on how to improve them. I’m also involved as a patient and public member at the British Heart Foundation-Data Science Centre. I am currently contributing to a research study that is exploring whether wearable devices can help detect and prevent heart disease.

As a patient and public member, I have participated in other aspects of research. This includes giving feedback on patient information leaflets, reviewing research questionnaires, contributing to, and co-authoring research publications as well as chairing meetings and presenting research to audiences. I have also made videos about patient and public involvement in research. These roles are entirely voluntary and there is no pressure to do them. It is up to each individual whether they want to take on an extended role or not.

What have you gained from being involved?

Being a patient and public involvement member has been rewarding and enriching for me. I have learned new skills and knowledge by working with various teams of highly skilled people from different backgrounds and disciplines. People, I probably, would not have interacted with normally. I also feel that researchers value and respect my contributions and that I have positively influenced the research process and outcomes.

“It is satisfying to know that I am helping to improve health and wellbeing for myself and others.” 

How do you think your involvement has had an affect or impact on research?

As a patient and public member, I can contribute to any aspects of the research process, I can share my lived experience and my knowledge of social care to help in the design of studies. Traditionally, research has been done with little or no input from patients. This approach is seen as research being done to and for patients and the public rather than with and by them. Being involved offers me an opportunity to ensure that the patients’ needs are met, and their voices are heard.  This supports researchers and the wider health and care system to deliver interventions and care that reflects the needs of patients.

As a patient and public member, I can raise issues and concerns that the researchers may have overlooked. This can alter the whole direction of the study. For instance, in one study proposal, a researcher planned to perform a procedure at home that normally requires an overnight hospital stay. The researcher had not considered providing training to patients or family members on how to administer the procedure or offering a helpline. The patient and public involvement team found this unacceptable, and the researcher revised the proposal.

What would you say to others who are thinking about getting involved in research?

I would encourage others who are considering getting involved in research to give it a try. It is a worthwhile, meaningful, and rewarding activity. You can use your personal experiences and insights to influence and improve research that matters to you and those close to you. You can also learn new things, meet new people, and develop new skills. You don’t need any special qualifications or background to be a patient and public involvement member, just a willingness to share your experience of health and social services with researchers. You will also receive support and training from the researchers and other patient and public involvement members.

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It was great finding out more from Anwar about his involvement experiences, what led him to get involved and hear his opinion on the value of patient and public involvement in research. What really came across was the importance of the public voice in research, as well as Anwar’s positivity towards patient and public involvement and research. A massive thank you to Anwar for his time. Next week’s blog will feature another public contributor to our work – Alison. 

Do you want to find out more about patient and public involvement and engagement? 

In our new online course ‘Nothing about us without us,’ you can learn about what makes good patient and public involvement and engagement in health and social care research. Register your place on the course today!