Psoriasis is an autoimmune disease that primarily affects the skin. However, 20-30 % of people with psoriasis also develop a condition called psoriatic arthritis, which can cause pain, joint stiffness and fatigue. Right now it isn’t possible to predict which psoriasis patients will develop psoriatic arthritis.
One of the goals of Innovative Medicines Initiative (IMI) project HIPPOCRATES is to deliver knowledge and tools that will make it easier to spot the psoriasis patients who are at greatest risk of developing psoriatic arthritis, and diagnose them faster. The project is also investigating factors that predict how fast a patient’s condition is likely to worsen, and paving the way towards personalised treatments for psoriatic arthritis.
Patient research partners (i.e. representatives of organisations for people with psoriasis / psoriatic arthritis) have been involved in HIPPOCRATES since its inception, as they helped to write the project proposal submitted in response to an IMI call for proposals on the subject. It was also agreed during the proposal stage that the project should follow the EULAR (European League Against Rheumatism) recommendations for the inclusion of patient representatives in scientific projects. The proposal was successful, with the reviewers praising the integration of patient organisations in the proposal.
‘Having experienced psoriatic arthritis for more than 40 years, I know how the disease impacts daily life in all its facets, so I immediately felt motivated to support the HIPPOCRATES initiative right from the start,’ said Maarten de Wit of EULAR, one of the HIPPOCRATES patient research partners who helped to write the proposal. ‘It is important to learn which people with psoriasis are at risk to develop arthritis so we can develop preventive treatments that are acceptable and that really work, without serious adverse events. Such research can only be done in partnership, by experts that bring all their unique knowledge, experience and laboratory opportunities together.’
When the project started in 2021, the group of patient research partners involved in the project expanded to 13. Together, they form the HIPPOCRATES Patient Advisory Council. Each patient research partner has clearly-defined roles and responsibilities. Between them, they provide the patient perspective on all aspects of the project, as they are involved in all project work packages as well as the project’s management team and external advisory board. Furthermore, patient organisation EULAR co-leads the work package on communication, dissemination, exploitation and sustainability.
The patient research partners have already contributed significantly to the design of the HIPPOCRATES prospective observational study (HPOS), which aims to identify the clinical and molecular risk factors for developing psoriatic arthritis. The project aims to recruit 25 000 people with psoriasis for the online study, which will run until 2024.
‘The patient research partners have been incredible helping to shape and design the HPOS study so that it really suits people living with psoriatic arthritis;’ explains Laura Coates of the University of Oxford, UK. ‘The patient partners have led on the choice of questionnaires to be included and provided the patient’s perspective to all stages of the HPOS study. They have provided a massive contribution to the quality of our research.’
Project coordinators Stephen Pennington and Oliver FitzGerald of University College Dublin in Ireland also recognise the added value of working with patients in this way. Professor FitzGerald notes that: ‘Involving people with psoriatic disease in HIPPOCRATES is a key component of our efforts to address unmet needs in psoriatic disease as of course they have first-hand knowledge of the diverse ways this potentially debilitating disease may affect them. Having experienced patient research partners with psoriatic disease keeps us focused and provides context for the detailed molecular and machine learning analysis.’
Six months into the project, the patient research partners ran a survey and workshop to review their experience of participating in the project. Overall the results were positive, with most patient research partners reporting that they were invited to work package meetings and included in e-mail exchanges, and all saying that they felt well-included in their assigned groups and roles. The survey results were presented at the EULAR congress in June 2022.
However, the project isn’t resting on its laurels; the Patient Advisory Council is planning a mid-term evaluation of patient research partner involvement in the project. They are also working on a special workshop or course for researchers who want to improve their knowledge of collaborative research. This is important as patient input will also be key for other activities planned by the project, including a study into the willingness of people with psoriasis to take preventive medicines if they are at risk of developing psoriatic arthritis.
Meanwhile Dr de Wit is clear about the benefits for patients of getting involved in research. ‘As patients it is a great and rewarding experience to feel part of an endeavour that might really influence the lives of other people with psoriasis and psoriatic arthritis. I have been very fortunate to receive excellent care and treatment that enable me to contribute to different work packages. For me it is an opportunity to learn more about my own disease, and also to give something back to society. In addition, I enjoy the contact with other patients and researchers, feeling you can contribute something meaningful to the project, although we are still at the beginning and we all have to learn how to collaborate most effectively.’
HIPPOCRATES is supported by the Innovative Medicines Initiative, a partnership between the European Union and the European pharmaceutical industry.