Bath Institute for Rheumatic Diseases on PsA Research and Education

In an interview with the Rheumatology and Arthritis Learning Network's sister brand, The Dermatologist, Celia Mead, Executive Director of Bath Institute for Rheumatic Diseases (BIRD), England, United Kingdom, spoke about BIRD’s initiatives and how the registered charity is supporting psoriatic arthritis research, education, and patient engagement during the COVID-19 pandemic. Ms Mead also discusses what it means for BIRD to have won the UPLIFT Innovation Challenge grant.

Could you briefly describe some of the research and efforts that BIRD is doing right now to improve the lives of people with psoriatic disease?

BIRD is a small medical research charity. Our work falls into 3 main areas. We fund pump-priming research in all rheumatic diseases but have a good track record of funding psoriatic arthritis (PsA) research in particular. We educate health care professionals (HCPs) (eg, consultants, doctors, and other allied HCPs) in rheumatic diseases, but we also run a growing patient and public engagement program. Within that program, we are looking to deepen patients' understanding of their rheumatic conditions, and we look for a number of other outcomes, which I'll discuss more later.

We have traditionally done this program by running live patient information events because we are colocated with the Royal National Hospital for Rheumatic Diseases, which has been going strong for 200 years. We have quite a big community of patients. During the pandemic, nobody wanted to do live events, quite naturally as these patients may be vulnerable. We started to look at digital offerings for patient information. We already did some work in that space—we have newsletters and provide access to information via email—but this was about allowing us to experiment with what methods would best suit and fit in with patients' lives.

Recently, we have moved more heavily into circulating patient surveys on behalf of academic researchers, and in general, with the desire to try and get patients more involved in research and to share their own case studies, too.

As you noted, BIRD expanded during to the pandemic. How else have you found successes in engaging and empowering patients during this challenging time?

We were flying a bit blind at the beginning of the pandemic. We canceled all of our live events overnight, but we wanted to provide something to patients who were otherwise isolated from their HCPs. We wanted to use information to fill a gap in patient outcomes, not just in terms of patient knowledge, but in terms of feeling isolated, needing to self-manage, needing to change expectations around treatments and outcomes, and increasing confidence.

Podcasts were initially an experiment. We knew that they would flexibly fit into patients' lives; you can listen to them whilst doing other things, pause halfway through, and go back to them later. We looked very carefully at the number of people listening to our podcasts, and right from the beginning we could see that the dropout figure of listening was really low. People were listening through to the end of a 30-minute podcast. I was also interested to find that one of our earlier podcasts, which was a patient case study in PsA, had high listening rates.

I thought that it would be the magic of talking to consultants and specialists, when in actuality patients welcomed hearing about other patients' journeys just as much. It was interesting to see what their time frame for listening was and the appetite they had for the variety of podcasts we offered.

Another innovation that we made—and that the UPLIFT Innovation Challenge grant allows us to amplify—is that we took out a heavyweight advertising campaign on Facebook that has just been brilliant. Instead of having hundreds of patients attending, we now reach thousands, and it's really because of the grant providing the added “oomph” of informational advertising on social media.

Things such as access to regular appointments and HCPs are going to only get harder in the immediate future. If we can give patients what we can to raise awareness and deepen their knowledge, we're filling a useful gap there.                                                          

Mel Brooke, patient and public engagement program director for BIRD, is a patient-expert herself and has PsA. Before this interview, she was talking to me about how we are able to raise the awareness of the risk for developing a link-to-arthritis condition in patients with psoriasis. She said that the access to information helps them to be prepared, to recognize symptoms, to plan their self-care, and can lead to early diagnosis and treatment.

I was particularly impacted by her saying, "It can be a shock, but it shouldn't be for [patients with] psoriasis that they have PsA developing." That's quite an interesting perspective—what she’s saying is that these patients are in shock when they shouldn’t be, and we can help them alleviate that shock or prevent it from happening by closing those gaps.

Mel talked about how we're helping patients get involved in research and about how important it is to involve patients right from the very outset to ensure that projects are inclusive, informed from a patient perspective and that the aims align with their needs. As academic researchers or clinicians contact us, her advice is always to involve patients from the very beginning. For example, our hospital, the Royal National Hospital for Rheumatic Diseases, is looking to develop an application to help HCPs identify who is high risk for developing PsA, including considering their lifestyle, behavior, and choices. Because we work with a community of patients with PsA, we have somebody within that group helping us develop our steering committee for that app. We have quite a strong community, which helps in the development of this information and how it's shaped.

What impact has receiving the UPLIFT Innovation Challenge grant provided your organization?

Quantitatively, advertising the podcast gets us out there by expanding the reach 10-fold. If we have thousands of patients listening to this podcast, listening through to the end, then those patients are all deepening their knowledge of the disease. We will also be surveying their outcomes as well, to make sure we see where we are making the difference.

In terms of quality, we're looking at the prospect of conducting webinars, which would be new for us. The point I was making earlier about, and what I wanted to come back to, is that we're developing these products with patients right from the outset. We can use the community that we're developing and building through the podcasts to figure out how to get the most out of a webinar.

I've been attending loads of webinars myself during the pandemic, and they vary hugely—some of them are very passive in terms of learning with very little interaction. What we're trying to do is quite different from that. We have a panel of patients feeding into how to develop our webinars. When patients sign up, Mel works to group and develop their questions and work formatively on what the lead consultants might be presenting, so that they are building the patient perspective into the questions right from the start.

The sessions are going to be more interactively facilitated and mediated to encourage the patients to get involved. The best measure of that is going to be how many of the patients attending speak up and ask questions, in whatever method that might be. We're aiming for all of them to do so.

Now, when we talk about an interactive webinar, I wouldn't go so far as to say we've failed if somebody just sits there and listens, because that's not the only idea behind this newer educational opportunity - we recognize that sometimes simply watching and listening suits the health status of the patient but still informs them and helps them feel engaged. We want patients to be involved formatively in the process of deepening their understanding of their disease so we’ll be evaluating as we go and looking for ongoing improvements in terms of evolving patient outcomes.

What outcomes is BIRD hoping to observe with these patient education initiatives?

Anxiety is certainly an aspect of being a patient that we hear over and over again, and patients often feel isolated. Patients like talking to other patients, even though their journeys will be completely different and individual. So, we look to reduce isolation or anxiety within our programs. The peer-to-peer aspect also helps us to change their expectations around treatments and outcomes and learn from each other’s lived experience.

As coronavirus surges, Patients are simply not getting to see their consultants and wait times to see their physicians are increasing. Patient to HCP facing time is short whether in person or virtually, so we also look to help patients become more confident, not just in their own self-management, but also in their interactions with HCPs. We want to help with filling gaps, particularly between treatment appointments.

Importantly, we want to help raise awareness so that family and friends can learn to understand the disease and its impact. In the past, we've encouraged them to attend our in-person events and to listen to podcasts. It is something that we do to help the wraparound environment of the patient, so that their family, caregivers, and friends understand their condition.

In what ways does multidisciplinary care help BIRD’s initiatives?

Although we're a rheumatic disease-focused organization, we do try to bring together information for patients from all of the experts involved in their care. In the past, we have had dermatologists present to talk about psoriasis at our information days, but having won the UPLIFT Innovation Challenge grant from Amgen, we can now afford to refresh and build our podcast series with some dermatologists involved. It makes a big difference.

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