Creating conversations: Connecting life science companies and patients to improve research
Kamil Sterniczuk tells how he was inspired to take part in a patient focus group advising on the proposed design of two new commercial studies, which will help improve the lives of people diagnosed with ulcerative colitis. He urges other patients to get involved in research too.
Under control, but not cured
For much of my life I’ve battled with the effects of ulcerative colitis.
This long-term chronic autoimmune condition - which causes the large intestine to become inflamed - can have such a huge impact on your life. I recall in secondary school, I almost flunked a grade from overwhelming fatigue due to the - then raging - disease. Thankfully my condition has been under control since I started taking the drug mesalazine. Doctors call my condition ‘quiescent’ meaning it lies dormant. The consequence of this positive status is that it excludes me from enrolling as a trial participant in virtually all interventional research studies into the condition.
So in theory, I should not care about getting involved in a patient focus group for a prospective study on ulcerative colitis, which I came across on NIHR’s People in Research website, as I know I will not be able to enroll in it. Yet I do care. Why? Because I am not completely free from the condition, and, as with most autoimmune diseases, this one follows a cycle of flare-ups and remission. So although it lies dormant now, it could make me miserable at any moment. My biggest worry is that my teenage son or younger brother may develop it. As a result, I care a lot that a cause and cure for the disease are found.
The NIHR as a facilitator
In the UK we are very fortunate to have the NIHR. As well as funding research, and training, and supporting researchers, the NIHR also accommodates patients’ and the public’s needs by involving them in every stage of the research cycle. As the patient focus group was facilitated by the NIHR, I knew I was in good hands because they set high standards for themselves and others. It also took place on a weekend so patients keen to be involved didn’t have to take time off work.
At the meeting were patients, representatives from the pharmaceutical company Pfizer and an NIHR facilitator. In addition, Pfizer clinicians and authors of the proposed studies joined us via a web conference from the USA to explain more about the design of the proposed research and to hear our feedback.
Myself and the other patients shared our experiences of living with the condition: how it affected our lives and how we managed it. Meetings like these remind me how fortunate I am that my condition is well under control. I really sympathise with patients who have the refractory form of the disease who do not even respond to novel treatments such as biologicals. We also discussed our experiences of being participants in clinical trials. While mine was mostly positive, other patients in the room pointed out some inconveniences they experienced.
Next, we gave our views on the two draft study protocols by answering very specific questions. These ranged from: 'Whose advice would we seek about joining a clinical trial?' To our thoughts on the medication packaging and whether it should be environmentally friendly. We also discussed how we’d prefer the drug to be administered, and how soon would we expect it to work.
I think the Pfizer team learned a lot from us. That’s the great thing about having a conversation as opposed to filling out a form.
Everyone is a winner
This is just one example of a collaboration between patients and a pharmaceutical company that is a win-win for everyone. Patients want new, effective treatments and medication which brings benefits that outweigh the possible side effects. Pharmaceutical companies want this too, but also need to recoup resources they invest into developing those new treatments.They need to be profitable so that they can re-invest more money in developing future treatments. Involving patients and the public in the trial design can help to eliminate some risk of failure, and increase the chances of successfully getting that treatment or drug to patients.
I strongly believe pharmaceutical companies are doing the right thing by consulting patients, and focus groups are a way forward. There are a few considerations for companies to bear in mind from my own experience:
- Although paying travel and food expenses is standard, offering an honorarium (payment for participants’ time) is more likely to boost participation. Patients are experts in their conditions, this level of insight and expertise cannot be acquired anywhere else.
- Always provide adequate briefing notes and explanation before the meetings so people can feel prepared
- Some groups of patients, for instance parents with young children, may not be able to attend in person. For them, teleconferencing is a viable option.
- Always provide feedback to those patients and members of the public who choose to get involved. It will encourage us to get involved again in the future.
Help if you can
Whether you are lucky enough to have found a cure for your condition, or if your symptoms are simply being managed, you can choose to share your lived experience of a disease with others to help drive research, help develop treatments and improve care. I like to think that my suffering has not been in vain: researchers can learn from it, and other patients can benefit. There are many ways to be involved and now technological advances mean you can even do it from the confines of your bedroom.
Help if you can.
Find out more about the NIHR Patient Engagement in Clinical Development Service.
The views and opinions expressed in this blog are those of the authors and do not necessarily reflect those of the NIHR or the Department of Health and Social Care.