In this article Pooja Saini talks about her experiences of involving patient and public groups in research, and outlines a number of top tips for researchers looking to include this type of work into their future studies.
Ever since working in health as a health care assistant or community support worker when training to be a psychologist, I have been extremely passionate about people being involved in making changes for themselves and their communities. Over the years, I have learned the skills of engaging with communities, particularly hard to reach communities or vulnerable patient groups and involving them in research or health initiatives taking place across the North West of England.
When did I start involving the public in my research?
Within Liverpool (UK) in 2007 there was a great initiative ‘Women Get Active’ launched by Liverpool City Council that was aimed at increasing physical activity for women within community settings. It became apparent that South Asian women were not engaging even though the activities on offer were free. Some of the reasons for this was that the exercise groups were all held in community centres far from where they lived. With funding from the Big Lottery Fund, I co-designed a health intervention that would meet the cultural needs ofSouth Asian women who were not engaging or accessing the ‘Women Get Active’ classes. Preliminary research was undertaken involving local Bangladeshi and Pakistani women. We asked whether they engaged in physical activity, where they would like to attend weekly sessions, what they hoped to gain from attending and what would encourage them to attend. Following their input, two 12-week physical activity and health information sessions were organised in their local community centres – one in school hours and the other in the early evening to meet their needs.
The intervention was very successful, more women attended than expected. The key element for the success of the intervention was gathering information from women on what they needed first in order to engage with the programme. Furthermore, other research ideas emerged from discussions within the health information sessions such as the stigma and lack of knowledge around screening for breast and cervical cancer. These discussions led to my research group at University of Liverpool to undertake a systematic reviewon the cultural and social factors in relation to cancer screening amongSouth Asian women. Subsequently, two women from the local community joined the collaborative research team to conduct the review alongside the research team. Both women have disseminated the research at public engagement events and national conferences. This work led to interviews for the BBC2 Victoria Derbyshire, citation in the national newspapers http://www.bbc.co.uk/news/health-40802527, and recently to me winning a national Asian Women’s Award for Public Service(https://www2.ljmu.ac.uk/staff-briefing/indexBulletin.aspx?utm_source=Staff_Bulletin&utm_medium=Email&articleID=681&issue=May%2014%202018).
Why should we encourage more people to become involved in research?
As well as providing a broad oversight to research projects, members of the groups build capacity within organisations as they bring individual views which then shape the recommendations for a service or future research. Through facilitating community events focussed on reducing health inequalities, increasing uptake of cancer screening and suicide prevention we have seen the value added to subsequent projects. Many public members within each area have since been involved in designing, training, participating and disseminating project work that impacts and creates change within their own communities.
Exciting ways to engage the public in research
- With third sector organisations, for example the implementation of a community non-clinical crisis service for suicidal men http://jwsmf.org/who-we-fund/
- Through a Black, Asian and Minority Ethnic (BAME) community advisory panel who inform on what ‘does’ and ‘does not’ work within their communities for Bowel Cancer Screening. http://www.clahrc-nwc.nihr.ac.uk/media/Info%20Hub/Improvingbowelcancerposter.pdf
- With the NIHR Collaboration for Leadership in Applied Health Research and Care North West Coast (CLAHRC NWC).https://www.clahrcprojects.co.uk/impact/bites/examining-role-multiple-clinical-and-non-clinical-factors-decisions-admit-patients
What were the benefits of involving the public in research?
I have worked on 35 projects involving at least one public adviseras an active contributor in the research. This way of working has begun to embed public engagement when exploring and designing new models of care. Public advisers have become an active contributor to the projects’ conceptualisation, design, delivery, and dissemination and many now work on multiple projects. Multi-stakeholder involvement has given The Universities across the North West of England a route to impact as it involves communicating with community-based groups, clinical commissioning groups and NHS (National Health Service) professionals who provide the health awareness literature or sessions within communities. All teams have welcomed public involvement, although it has proved challenging at times. We have needed to ensure that everyone in the group is heard and that there are opportunities to attend training on how to conduct research. An unexpected outcome, was the personal benefits for public members. Some public members have now become involved in multiple projects across the region, and others have gone on to study as interns. Many have informed us of the positive changes in their lives such as feeling useful, gaining respect from family members, increased confidence speaking about health issues to colleagues, professionals and community members, and personal changes in their own awareness of research and health.
Top tips for engaging public members in your research:
- Be motivated, engaging and passionate about the topic/work/project
- Be prepared for the unexpected as you may get more professional support than you thought or sometimes less
- Have the time for the public members and remember they are not experts but that most are willing to learn
- Encourage wider stakeholder groups to help as this can create support for you and build bridges between them and patient/public groups