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Patient and public involvement (PPI) support
As a patient organisation, we believe that research has the most impact when people with psoriasis are involved in the project. As such, we are pleased to support researchers with patient and public involvement (PPI).
PPI is defined by NIHR INVOLVE as research that is ‘being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them’. PPI can include:
- reviewing a research proposal,
- attending a focus group,
- sitting on the steering committee,
- consulting on research materials,
- consulting on the research ethics,
- reviewing dissemination plans, presentations and engagement activities,
- being a co-applicant and co-researcher
How can the Psoriasis Association help?
The Psoriasis Association can support researchers to find individuals with psoriasis to help with their research project via:
- Our Research Network. This is a group of people with psoriasis who are specifically interested in research. Opportunities to be involved in research are sent directly to members of the Network, allowing interested individuals to then get in contact with the researcher or take part.
- The Psoriasis Association website. Our website has a ‘Taking part in research’ page, where current involvement opportunities are listed. Opportunities can be advertised for as long as needed and allow anyone to take part or contact the lead researcher.
- The Psoriasis Association social media channels. These allow us to communicate with a wide range of people affected by psoriasis. Depending on the suitability and the current posting schedule, our Communications team can post about PPI opportunities that we are promoting and direct people to the Psoriasis Association website or to the study itself.
Who can we support?
The Psoriasis Association is pleased to support researchers based in a UK university or hospital whose work is focussed on researching the causes, nature, or care of psoriasis.
Case study - Gaining feedback on a research proposal
"I contacted the Psoriasis Association asking for help from their patient network to gain feedback on my proposed PhD research project, studying the influence of obesity on psoriasis. Through an online advertisement on the Psoriasis Association’s social media streams, I was able to recruit a group of 7 members who have feedback on my proposed project.
This generated very useful discussion about terminology and core concepts behind my study proposal. Members of this discussion forum clearly had a vast knowledge of what is already known in this area and ongoing studies. It was also interesting to hear how the potential outcomes of my study may benefit people with psoriasis in the future. Members of the focus group also completed a questionnaire, which gave insightful feedback on the psychological challenges associated with potential weight reduction strategies that may prove beneficial in improving the psoriasis in certain people.
have found this experience incredibly useful and it gives me additional inspiration
to know that there are others out there who are as excited about my research as
I am. Many members have offered to help me design information leaflets and give
presentations at Psoriasis Association meetings to help inform the community
about the impact of results from my research. As a junior researcher, I am so
pleased to learn about the existence of an organisation that helps facilitate
bidirectional communication between researchers who study psoriasis and people
who suffer from the condition. I would like to thank the Psoriasis Association
for using their reach to make this experience possible and would love to work
with them again in the future."
Dr Ravi Ramessur, St John’s Institute of Dermatology, King’s College London
If you would like to learn more about working with the Psoriasis Association on involving people with psoriasis in your research then please get in touch!