Dr Susanna Rance, a Senior Research Fellow with the Institute of Health and Human Development, University of East London (UEL), draws on experience from her team’s latest work in Newham and shares her five top tips to ensure effective patient and public involvement in research.
Dr Susanna Rance is a specialist in women’s health with 14 years’ experience leading and supporting research which has patient and public involvement at its heart.
In her current role, Susanna works with UCLPartners and Newham Clinical Commissioning Group leading the “Low Birth-Weight in Newham: Definitions, Antecedents and Consequences” project which aims to understand the factors influencing low birth-weight in the borough of Newham. This is a health priority for the borough where 9.7% of babies are born with a low birth-weight, significantly higher than the national average. The project is piloting initiatives to address the issue.
Targeted prevention and management activities currently being tested include women’s pre-pregnancy ‘Healthy Conversations’ with volunteer health buddies, a bank of case studies sharing existing local initiatives that promote healthy infant feeding, and the production of a short film showcasing some of the support services locally available. Involving parents and expectant parents from the area has been an essential part of designing these activities.
“Our research project looking at low birth-weight in Newham began in 2015. Newham is an ethnically diverse area with a relatively young population. From the outset, our team knew that involving parents and expectant parents from the area in our study was going to be invaluable to ensuring that our work was relevant.
“People who took part in our community engagement events brought their personal experiences of parenting and caring for babies born small, and helped us identify what was working and the support and information that was missing. Our community involvement model was truly inclusive and has allowed us to design activities directly related to feedback that was given. Here, I’ve compiled my top tips for engagement, sharing our approach.”
Five top tips
- Don’t reinvent the wheel
There is no need to start from scratch when developing your model for community involvement. Evidence-based research suggesting effective approaches is already out there, so take advantage of that. We used elements of the CEAD (Community, Engagement, Assessment, Design) model for stakeholder engagement. This model has been developed as part of the ‘Well Communities’ work led by UEL’s Institute for Health and Human Development and uses methods such as community asset mapping, World Cafes, appreciative enquiry, co-design and co-production.
- Allocate adequate funds
Funding is an important enabler for involving patients and the public in research. A comfortable environment with adequate space is essential for effective involvement work, so consider what this will cost and budget for it. Items such as venues, lunch, travel, crèche, flowers, payment vouchers, staff time, training, ready funds for ad hoc needs and on-the-spot reimbursement were all factored into our project budget right from the start.
- Get a wide range of views
Different community groups will bring a range of viewpoints and experiences to the table. It’s essential to spend time reaching out to the community to engage people with varied backgrounds and living situations. We visited various community groups when we were setting up our involvement activities. We wanted a diverse group representative of different ages, ethnicities and genders. During our engagement events we used plain language and allowed time for interpreting.
- Remove the labels
Creating a safe and supportive space where everyone in the room feels their voice is of equal value is essential, so remove ‘title’ labels. Make it clear that no matter what your role is, be it professor, doctor or patient/public representative, your view is equally important. This is one of the first things we outlined when our patient and public involvement group started meeting. We set out some ground rules and reinforced the importance of listening to each other, speaking up clearly and confidently, and recognising the value of each other’s contribution.
- Provide training and support
Some people who participate in involvement and engagement activities may benefit from additional training to increase their confidence in certain areas such as presenting in public. Offering training according to group needs can help you get the most from those you are working with, and give back to them in recognition of their contributions. Further involvement opportunities can also be beneficial, such as buddying, advocacy and representation in an advisory group. Some of the group asked for one-to-one meetings with members of the research team to explore further volunteering and training activities and career advice.
The Low Birth-Weight in Newham project is ongoing and will draw to a close later this year.