Patient Research Partners - collaborating with researchers to ensure the right questions are being asked
Being a participant in a research study isn’t the only way to contribute to research and the health of the nation. An equally important role is that of Patient Research Partner - someone who lives with the condition related to the research who can shape the study from the very beginning.
At the inception of the study this includes helping to generate research questions, ensuring that the questions the study is asking are clear and important to patients living with the condition of concern.
The ASSESS study, led by Chief Investigator Dr William Tillett, is a study currently underway at the Royal National Hospital For Rheumatic Diseases (RNHND) and has advocated for the inclusion of a Patient Research Partner from the outset.
The study is aiming to improve the assessment measures in psoriatic arthritis in ways that are important to patients living with the condition. From the outset, patient participation has been essential for the design and development of the trial.
The study is aiming to improve the assessment measures in psoriatic arthritis in ways that are important to patients living with the condition. From the outset, patient participation has been essential for the design and development of the trial.
Dr William Tillett said: “The ASSESS study aims to improve the assessment of psoriatic arthritis. The burden of disease is often greater than clinicians realise because people with psoriatic arthritis don’t just have arthritis, they can have skin psoriasis, tendonitis and spinal problems.
We are developing a better way of assessing psoriatic arthritis that captures all of the ways in which patients affected. Existing measurement tools did not have meaningful patient involvement during the development phases and we have shown they miss important aspects of disease activity including pain and fatigue.
By incorporating the patient perspective throughout the ASSESS study we are capturing the ‘lived experience’ of the disease in this new tool thereby giving a new measurement tool greater face validity. The new measurement tool can then be used to better assess new drugs and treatment strategies”
Psoriatic Arthritis is an inflammatory arthritis occurring in up to 30% of patients with skin psoriasis. Patients can develop swelling in joints, tendons, spine, skin, nails and eyes causing stiffness, pain and fatigue. Left untreated the inflammation results in damage causing further pain and restricted movement.
Mrs Mel Brooke is a Patient Research Partner who has worked alongside the rheumatology consultants at RNHND and researchers from Bath University. As a patient with Psoriatic Arthritis who leads a peer support group, she has valuable insight into, experience and understanding of living with the condition.
She said: “As a Patient Research Partner, you are there to help ensure that information is clear, there is minimal use of technical jargon and that any information for patients is easy to understand from a non-clinical, non-expert perspective. You are also there to advocate for the patient voice – saying if you believe patients would or would not be happy with elements of the study, how participation may be made easier and/or as minimally invasive as possible for them should there be procedures and clinic visits.”
“I have always been welcomed and treated with respect – no question is unanswered or ignored. Having patient partners on hand can help to identify and answer study questions quickly and more accurately reflect patient needs. Researchers also learn much about the reality of life with disease, its impact on daily life and what really matters to the patient – leading to better designed, more targeted and (hopefully) effective treatments and support.”
Speaking about the future of Patient Research Partners Dr Tillett said: “Academics and clinicians are increasingly realising the important of Patient Research Partners. The real challenge that we face is in reaching and supporting more people who can participate and contribute to the wide variety of exciting research being made at the moment and taking the experience we have in rheumatology to other disease areas.”
