Patient Experience Research Centre

In conversation with: Aime Boakye, Junior Study Coordinator and PPI/E Lead
Working within: HPRU in Respiratory Infections

---

What did you do?

It was a primary aim of our NIHR Health Protection Research Unit (HPRU) in Respiratory Infections to seek meaningful patient and public input in our three research areas: Influenza, Tuberculosis and Other Acute Respiratory Infections. Therefore, we appointed two patient representatives (for Flu and Tuberculosis) who were invited to our key strategic and public meetings.

Additional to that, in January 2017, we set up a panel of patients and members of the public who either had experience of respiratory conditions or were interested in our three research areas. We meet between two and three times a year for two hours where they helped us to identify, plan and design our research within the themes listed above.

What were you trying to achieve?

Our HPRU wants to make sure that the patient and public voice impacts our research strategies, projects and functions so that our research is accountable, transparent and relevant to the public. Therefore, we hoped that setting up this panel would make it easier and quicker for researchers within the HPRU to integrate public involvement into their work.

We also work with the dedicated Imperial NIHR Biomedical Research Centre (BRC) Patient Experience Research Centre (PERC) to improve our HPRU researchers’ and public representatives’ awareness and understanding of patient/public involvement (PPI) and public engagement (PE), and their access to training and other resources.

 

Who did you involve and how did you find the right people?

We recruited members of the Panel using INVOLVE’s “People in Research” platform, which tends to attract people with an interest in getting involved in research. This proved to be very important as in hindsight we are grateful that our panel are passionate about trying to improve the quality and translatability of research and demonstrate the commitment researchers need to see their involvement project through from start to finish.

To ensure that the panel was as diverse as possible and benefited from different skills, expertise and experience, members were selected based on: 1) demographics; 2) level of PPI (patient and public involvement) experience; and 3) connection to respiratory infections those who came forward were asked to complete a background form. Membership of the panel was open to those who were directly or indirectly affected by, or interested in, our three research areas: influenza, tuberculosis and other acute respiratory infections.

 

Were the people you involved given any training?

We hosted an introductory meeting for the prospective panel members where we presented background information about the HPRU and gave examples of two of our current projects so they understood what kind of work we did. This helped to set the context of their involvement and provide some motivation for their continued contribution. We then asked them to fill in a training and support questionnaire so we could identify whether any further training on public involvement or research was needed. Where necessary, we try to build these into future panel meetings or link them with opportunities to separate public involvement training sessions.

 

Did you achieve what you set out to do?

Within just seven months of the panel being launched, we’d already managed to involve them, and other collaborators, in a number of research projects within the HPRU that covered almost every stage of the research cycle: (Prioritising) interviewing Multi Drug Resistant (MDR) TB-treated volunteers to help prioritise research topics, reviewing information leaflets for MDR patient interviews; (Commissioning) reviewing the lay summary of  our MDR TB grant application; (Designing and Managing) supporting protocol development and co-creating participant recruitment materials, participant information sheets and consent forms for a TB study; and (Evaluating) evaluating an animation film and the impact of public involvement on its development (see Case Study 6: Involving the public in TB awareness).

 

Overall this has led to a successful ethical approval for the TB study, and being awarded with the Imperial Societal Engagement SEED fund grant for the latent TB animation. We believe these successes were due in part to the material having been reviewed by the panel.

 

What impact did it have on the people involved?

We’ve had really positive feedback from both researchers and members of the public who’ve been involved:

 

What was the most challenging part of doing PPI and how did you overcome it?

Public involvement is bound to have some challenges, especially to start with, but they can normally always be overcome.

Our first challenge was recruiting people to the panel. We first tried promoting the opportunity by putting simple posters in patient clinics and third sector organisations, but we didn’t get much interest. We realised that we needed to try something different, which is why we used the People in Research platform. This approach was much more effective – 18 people responded – but it also brought with it a new challenge: selecting a panel that met the needs and resources of the unit. Some people who came forward were located too far away for our budget to be able to cover their travel expenses if continually involved. Peoples’ level of involvement experience was also important – we wanted a mix of people who had experience of public involvement and those who had never done it before. It’s always awkward having to turn down people interested in being involved for these reasons, but it taught us to think harder about the inclusion criteria in the future, and make sure this is clear in the advert.

As the panel has become more established, finding appropriate meeting times and communication methods that work for as many people as possible continues to be a challenge. But we just do our best to embrace everyone’s differences and ensure we’re offering equal and fair opportunities to those involved. We are aware that while the panel we selected are diverse based on those who came forward, we are still missing the voice of quite a few demographics. This will be harder to overcome though unless we continue to progress the wider publics’ perception, awareness of and interest in science research through our public engagement work.

 

What advice would you give others interested in doing something like this?

Make sure you are very clear about who (number of people, age, ethnicity, involvement experience) you want to involve before you start recruiting as this will guide how and where you find them. It is also important to understand and accommodate for the skills and needs of your panel, and to embrace all aspects of their personalities.

 

So, what’s next?

We would like to recruit additional members to the panel who have personal experience with TB (or through family members) in order to assist us with our TB research. We would also like to find a simple way to measure the impact of our public involvement. In the context of specific projects, we are hoping that with the help of the panel, we will develop innovative ways to disseminate the developed TB animation film. We are also planning to get our panel involved in as many grants as possible in the coming months.

 

Who should people contact if they want to learn more?

If anyone wants to find out more about our PPI panel, or our areas of research, they can contact me (Aime) on afua.boakye12@imperial.ac.uk.

 

---

If you’ve got a public involvement story you’d like to share, please get it touch.

---