By Emma Dorris
Last year, we initiated a Public Patient Involvement (PPI) scheme for researchers from all disciplines studying arthritis & rheumatic disease in University College Dublin. PPI encompasses a variety of ways researchers engage with the people for whom their research holds relevance. It helps ensure that patients and carers are informed about research that is relevant to them. Done correctly, active and formal PPI can result in increased public support for research and enhance the likelihood of patient involvement & retention in clinical studies.
In the UK, the research charity sectors have largely taken charge of PPI & developing PPI resources that researchers can access. In Ireland, the population and funding base is too small for charities to follow the same model. Therefore, it is falls to the individual universities, institutions & research groups.
I work in patient-centred research. However, there is no reason why the barriers and benefits outlined below would not translate to other disciplines and research areas.
Working hand in hand with patients
My first step was to recruit engaged patients to help build the scheme together. Through social media, direct contact with patient advocacy groups and local community engagement I currently have a panel of 40 patients who are helping me to build this scheme.
When starting out I got a lot of help. I just asked & approached anyone I knew or was told had experience. It was a strange exercise because everyone, without exception, was supportive & helpful- not something you often find in standard research endeavors!
I reached out to patient advocacy charities (Arthritis Ireland & iCAN in my case) & the medical research charities group. I also reached out the the UK groups with experience, ARUK were brilliant & allowed me attend their workshop. I went to every meeting regardless of discipline that had a PPI focus & just spoke with people. Once I had contact from patients they suggested other avenues and were very helpful in advertising within their own networks.
I purposefully took a community based approach to seeking patient and public involvement. I could have solely attended rheumatology clinics and sought patient insight. The reasons I didn’t were as follows:
- Representation. Arthritis and rheumatic disease is the largest cause of disability in Ireland. Not all people living with these diseases attend consultant clinics on a regular basis. Although I did have leaflets about our scheme in the clinic waiting areas, I felt a combined community approach may catch a wider sphere of people.
- Distinction between involvement and study participation. I wanted to avoid the implication that we were recruiting for a clinical trial or to obtain research samples. For most people hospital clinics are not associated with research, even university hospitals. They are also stressful environments for many. Therefore, I wanted to avoid any, even potential, misconceptions about the scheme being an enrollment into a clinical study. Trust is a central tenant of any public involvement and I didn’t want to cloud that in any way.
- Reach. We actively collaborate across the country. We wanted anyone with experience of the disease to become involved. Therefore, the community approach allowed people from all areas to engage with us.
- Establishing the tone of the scheme. We wanted our PPI scheme to be a peer-to-peer dialogue. In a clinical setting, there are pre-formed relationships, which tend not to reflect this. We want our public and patient insight partners to feel comfortable enough to share their views and experience of disease. Therefore, to reinforce the reciprocal nature of PPI and terms of reference (with peer-to-peer dialogue and respect being central tenets) we actively removed it from the clinical setting.
Challenges to implementing PPI
1) Accessing people living with arthritis from the community without funding. Ideally I would have loved to printed lots of material & a little mobile stall & attended community events all across the country. However we had no budget to do so (also, I’m also a full-time wet lab scientist!). Now we have established some evidence of benefits for PPI, we are applying for funding to do this & grow our patient panels.
2) Clinical researchers in particular (only some of them) initially considered it a box ticking exercise & support/commitment was lacking. Again, now we have positive evidence, this is being overcome.
3) Resources. PPI was not built directly into our budget (although it will be in future) so was difficult to get resources in place. We were lucky enough to receive support from our Institution (The UCD Conway Institute of Biomolecular and Biomedical Research) to fund our initial discussion forum between patients and researchers to design the PPI initiatives.
4) Ingrained thinking. We needed to think outside the university sphere. We are developing various different communication platforms. The standard online platforms assumes everyone is tech literate, everyone has broadband and everyone has access. Accessibility is really important when dealing with the public. I work with the National Adult Literacy Agency (NALA) when producing our documents & also produce audio versions of our reports. Again, funding will be important to be able to travel, post and develop multiple engagement platforms.
5) Time and Communication. Developing this initiative took an enormous amount of effort and time. The administration, logistics and learning to use a completely different structure of language took effort. The last point about language may sound odd. I am also a member of the public, so why should communicating take so much work? We are trained so much in scientific language, even sentence construction and syntax, that when I am dealing with my work and thinking about aspects of my work, it is actually really difficult to break out of it. Most of my working day I am speaking with people who are also scientists and researchers who use the same language. They don’t view it as alien. Many of the public, even the engaged public, do find it alien. The whole point of PPI is to stop alienating people. If you take one thing away from this blog let it be the power of language. Whether the public will pursue engaging with you will largely depend on the language you use when communicating with them. Take the time to do it correctly.
Setting up a PPI took enormous effort but has been extraordinarily fulfilling. Within six months we have already seen benefits.
- We have become more multidisciplinary as a group, we have a new sociologist Postdoc studying patient experiences. We are collaborating with the School of Applied Psychology to take a more holistic approach to disease research.
- Opportunities. I personally have been asked into 3 different funding applications due to my involvement work. My work has been highlighted within my institution and I have been asked to speak at seminars.
- Patient insight. Our patient insight partners have been hugely active and engaged. They have extraordinarily informed insight into so many areas. I have been sent journal articles from patients where they have pointed out issues in the methods that would easily have been overcome with patient involvement. We have received patient input into lay abstracts, and I have a patient as a co-supervisor on a funding application for a summer project.
- Engagement and communications: Feedback, Feedback, Feedback! A recurring theme from our public and patient partners. In response, we have initiated a research newsletters together. Our editorial board consists of patients and researchers, ensuring relevance to both. It also greatly helps with out communication as our patient editors pull us up on our use of jargon and inaccessible language.
- Research advocacy. I have very quickly learned from this experience that the engaged public have a reach and authenticity within the general population that we, as researchers, are unlikely to ever be able to achieve. There is an inherent trust of the experiences of people living with the disease, that is, unfortunately, often lacking from researchers who are still very much “other” or “ivory-tower”. We are of course working on breaking down these barriers. However, working closely with people living with disease gives you a unique opportunity to take a grassroots approach to public support for research. Engaged people tend to be very active within their communities. If you can develop trust, respect and good relationships with your public partners and really inform them and involve them in your research, they will spread the word about your research. They will become your research advocates and they will push policy makers on funding research.
Patients really want to help & engage in our research. My advice to you: let them!
[The image featured at the top of the blog was sourced from the Government of Alberta]