Why patient involvement in research matters
Jane Dunnage was forced to give up work due to the rare autoimmune condition systemic lupus erythematosus, also known as SLE or lupus. After 10 years of being a Trustee for the charity LUPUS UK she now leads patient involvement for the MRC-funded MASTERPLANS* study. She explains why research needs the patient voice.
I had to give up my job in communications about 20 years ago because of the symptoms of lupus. It was affecting my eyes and my joints, and the fatigue was extremely disabling. I found it impossible to carry on working.
But it was another four or five years before I was actually diagnosed. I became a ‘pass the parcel’ around different consultants and departments for a year. Then somebody at long last recognised the link between the wide-ranging symptoms and said, “I think you have lupus”.
Lupus is a complex autoimmune condition where cells in any part of the body can be attacked by the body’s own defences. That means it is complex to live with and causes a multiplicity of symptoms.
There is no cure. Therapy is complicated and sometimes based on a ‘trial and error’ approach. The main aim of any medication is to try and keep the immune system from seriously affecting the major organs. Current medications carry side effects and some patients must take lots of immunosuppressant medication.
Finding the right treatment
Research is focused on finding the right treatment for the right patient. There are four or five treatments that are used regularly, but there is no simple way of knowing which will be effective for which person.
The MASTERPLANS study aims to change this. It will group people who respond well to specific therapies, then analyse their shared characteristics with the aim of guiding effective treatment for other patients. The study will look for genes, as well as chemicals and cells in the blood, urine and tissues, that may help predict how well patients will respond to lupus treatment.
It was quite revolutionary, and a great honour, to be asked to get involved in the study at an early stage. Being a rare disease, lupus affects a small population. As a LUPUS UK Trustee I got to know the clinicians and scientists involved in lupus research. Then three years ago, Ian Bruce from the University of Manchester, the Chief Investigator of the study, asked me if I would work alongside him.
We now have 18 different patient collaborators (14 patients and four carers) who reflect the diverse population affected by lupus – it can affect people of all ages, races and genders. Two patient collaborators sit on each of the five project committees and a working group. This means that we can support each other and ensure a patient voice if somebody’s not well enough to participate.
We’ve put together a range of opportunities for patients and carers. For example, patient representatives reviewed the study’s communication strategy for patients and the public.
Several collaborators are working on the public and patient pages of the MASTERPLANS website and we’ve produced a glossary to help us understand some of the complex terminology.
We’ve also reviewed patient information leaflets and questionnaires, made suggestions to help successful recruitment to the study, and spread the word among lupus patients at hospital open days.
Hearing patients’ voices
Patient involvement in research is vital because we can present patients’ views directly to the scientists.
We can act as ambassadors to patients and try to get them interested in participating in future trials. Enrolment for the PLANS clinical study (a key part of MASTERPLANS) is underway. This study aims to understand patient responses to two treatments.
It’s still early days. But if we can make this model of patient involvement work, there could be opportunities to replicate it for other illnesses.
We know that as individuals we may not benefit personally from the research. However we hope that the knowledge gleaned will clarify appropriate and effective treatments for patients in the future.
Anything we can do for future patients is important. Just to make some of those huge hurdles a bit flatter – so that lupus is not as devastating an experience, particularly for young people.
*Maximising SLE Therapeutic Potential by Application of Novel and Systemic Approaches
Find out more on the MASTERPLANS study website.
Photo of Jane Dunnage (credit: Derya Boyraz)
Also published on Medium.