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- Case study #19: Involving women in the design of maternal cardiovascular research
- Case study #20: Public involvement in prematurity research at Imperial Women’s Health Research Centre
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In conversation with: Olive Adams, Research Midwife
Working within: Centre for Fetal Care (NIHR Imperial BRC Theme: Maternity Cardiovascular)
What did you do?
Our research department, the Centre for Fetal Care, undertakes studies on maternal cardiovascular health and other conditions in pregnancy at Imperial and with European collaborators.
We formed a group of women who were either affected by conditions addressed in our research or who were in the pre-conception period (the weeks or months when a woman or couple decides to have a child). We wanted the group to meet quarterly and to give us their views on the research taking place in our department.
At one workshop we held for 9 members of the group, we asked the group to comment on an upcoming research project and invited them to share their experiences of their condition. We also provided a questionnaire to determine the priorities of the group in regard to the research project’s outcomes and main themes. We used their answers, comments and feedback to strengthen the design of the research and the funding application.
What were you trying to achieve?
As the main aim of our research is to benefit patients at the Centre for Fetal Care, we wanted to involve them by enabling them to have a say in whether research we were undertaking (or planning to undertake) was relevant and acceptable to them.
Who did you involve and how did you find the right people?
We displayed posters in maternity areas and approached patients who we thought might be interested. We also invited the women’s partners.
Were the people you involved given any training?
We sent each person a detailed email explaining what to expect from involvement in research and our sessions. Before the workshop, channels of communication were kept open over email so that any questions could be answered ahead of time. We encouraged those who attended the workshop to attend free training sessions run by the Patient Experience Research Centre.
Did you achieve what you set out to do?
Yes. The workshop resulted in changes to the design of one of our projects. Patients suggested the following for improving the design and conduct of the project:
- Reducing what we were asking from participants: we reduced the number of interventions measuring diet and exercise and excluded weight loss.
- Ideas of where to publicise the study for recruitment; and
- What they would expect from the researchers (in terms of engagement during the study) if they were a participant.
Including the insights gained from our workshop in grant applications also positively influenced our ability to successfully obtain grants. A reviewer of one grant application submitted by the team commented that the public involvement activity was “well thought out and significant”. Now, we ensure that patient involvement is a key component of our work and funding applications.
What impact did the Public Involvement and/or Engagement have on the people?
People who attended our workshop gave positive feedback about their involvement. A number of attendees have committed to projects in the long term and will be kept updated. We have found this aspect of our research so rewarding and fulfilling that we now incorporate this activity into any new research studies within our research department.
Public involvement has shown us how research participants can directly influence our research projects to offer improvements and new ideas to researchers. It has contributed to fine tuning our projects and we will continue to actively seek contributions from the public for their insights into research.
What was the most challenging part of doing Public Involvement and/or Engagement and how did you overcome it?
It was difficult to secure a full group of nine people that will attend/commit to attending events on a long-term basis. For some (but not all) meetings, we had last minute dropouts. We were maybe a bit ambitious to think that people would commit to two-hour long meetings. However, it was still beneficial to run meetings with a smaller turnout: people still contributed, and we gained a lot of valuable insights.
What advice would you give others interested in doing something like this?
Approach your research participants and patient groups and ask them how they would like to get involved. The Patient Experience Research Centre has tonnes of resources to help you. They also offer training to get you started with patient involvement.
So, what’s next?
- Kept in touch by email with those who attended the workshop to update them on the stages of the project and to seek further input, such as reviewing the patient information sheet.
- Asked two women who contributed to this workshop if they would like to be involved in the longer-term as research partners where they could contribute at research management meetings throughout the project.
- Continued to embed patient involvement in upcoming projects and intend to keep developing our involvement activities with the many enthusiastic peoples who have been informing our research.
- Shared the positive impact of public involvement across the research department and at conferences attended by many international and European researchers.