Our experience of working with a company to improve research
Gillian and Neil, research volunteers at Parkinson’s UK, share their experience of taking part in a workshop to help shape research being carried out by UCB — a global biopharmaceutical company who are developing new treatments for Parkinson’s.
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In 2019, Parkinson’s UK and UCB hosted a workshop with 14 people affected by Parkinson’s to discuss the form of a medication to be used in a planned new trial, and how it should be packaged. In this blog Gillian and Neil, who attended the workshop, reflect on their experience of being involved and working with researchers from a pharmaceutical company.
How does taking medication for Parkinson’s impact your daily life?
Gillian: It is a reminder of having an illness which needs constant medication. I have to remember to carry the tablets and water with me when I am out and about. I also thought about it recently, when people have been stranded abroad because of the current coronavirus situation, and the need to have enough medication with you if an unexpected situation arises.
Neil: Taking my medication is a constant reminder that I have Parkinson’s but it has also made my life so much better by reducing the symptoms. It impacts the structure of my day and I need to be aware of how activities will impact my medication. I always have to ensure I have medication with me so that I can take it when I need to.
What made you want to get involved in the workshop?
Gillian: I have always been interested in the way that pharmaceutical companies develop drugs, and to be honest I was rather sceptical of their motivations in relation to what would give the most profits. The workshop was an opportunity for me to learn more about pharma and the process of making new drugs.
Neil: I want to do as much as possible to fight this horrible condition and this was an opportunity to do a little to help. Also I was interested to learn the processes that companies go through in trying to optimise their medication.
Did you do anything to prepare for the workshop?
Gillian: We had useful information sent about the background to the project, what stage it was at and clear guidelines on what was expected of us on the day. I found this all helped to prepare me for the workshop and I felt confident about my involvement. There was also an insight into the ‘culture’ of pharma through the compliance procedures, confidentiality, competition etc.
Neil: As well as going through the materials we were sent, I also discussed my attendance with other members of our local Parkinson’s group. As the membership is made up of people who are at different stages of their Parkinson’s journey they were able to give me ideas that I could contribute. However, I could only talk about the workshop in general terms as the details of the workshop were covered by confidentiality. I also discussed it with my wife Jennifer who is visually handicapped, and she gave me insights on how taking medication can be problematic for people with sight problems.
How did you find the day?
Gillian: I found the day well structured and enjoyable. I particularly found the discussions on how to encourage people to take their medication interesting because it was something I had never thought about. It was news to me that some people with Parkinson’s are not compliant with their drugs and I learnt from other attendees why this sometimes happens and the challenges it presents for trialling new drugs.
Neil: I enjoyed meeting up with other people with Parkinson’s. The thing I found most interesting was seeing a “light bulb” moment when one of the UCB members realised that taking medication in the middle of the day is problematic for some people particularly when they’re in work and have to fit medication round work and food. This highlighted how important it is for researchers to work with people affected by Parkinson’s as they often do not understand the practicalities.
Was there anything that surprised you about working with the pharmaceutical company?
Gillian: I found them much more open to suggestions than I expected. They seemed genuinely interested in our experiences of taking medication and willing to take it on board — within the limitations of drug development
Neil: I also found that they were open to our experiences and ideas. I felt that nothing was off the table for discussion. The workshop was held early on in the long process of drug development so that the insights from patient and public involvement contributors could be fed into the long and complicated process at an appropriate point. The contributions will then form part of the decision making process. However not all our thoughts will be acted on as ultimately the efficacy of the drug is the most important consideration.
What impact did the workshop have on you?
Gillian: I felt really valued for my contribution and that my experience was really listened to by the people there . It showed me how it was possible for pharma to work with people with Parkinson’s and incorporate suggestions, where practical, into the design of new drugs.
Neil: I also felt valued and felt I had helped contribute to giving the company a better understanding of what people with Parkinson’s experience. It was also interesting to meet with other people with Parkinson’s and in some cases their partners and this highlighted once again how everyone’s journey with Parkinson’s is different.
How did the workshop compare to other opportunities you’ve been involved with?
Gillian: I enjoyed the opportunity to take part in a different PPI activity, a workshop, which demonstrated to me the breadth of the role at Parkinson’s UK.
Neil: I found it more rewarding because interacting with the people involved face to face personalised the experience. Working through documents, while being rewarding, can be a bit dry and impersonal. The role of a PPI volunteer often involves opportunities to review proposals in the form of electronically transmitted documents. These are then reviewed by the volunteers who send their feedback back to the researcher.
How do you think companies and people affected by Parkinson’s can best work together?
Gillian: I would like to see more companies seeking input from people with Parkinson’s so new developments are relevant to people’s everyday lives and people will be more likely to comply with the medication. I think one of the barriers with working with pharma is their compliance/ copyright/ confidential needs that mean the process of involvement is quite complicated and time consuming. This may be something the industry needs to address if it genuinely wants to involve people in their developments.
Neil: I think the model of meeting with people with Parkinson’s at early stages in the clinical trial process is good, as it provides an opportunity for new ideas to develop during discussions. I felt the barriers of compliance/copyright/confidentiality for the workshop were not too difficult and were understandable.
How can patient organisations like Parkinson’s UK support this collaborative working?
Gillian: I think it is essential to have Parkinson’s UK facilitate the involvement process and act as a bridge between the needs of pharma and people with Parkinson’s, otherwise I don’t see it really happening in a meaningful way. It felt important to be guided through the involvement by an organisation that I trusted to have my best interests at heart.
Neil: I think for the consultation to work between patients and companies there needs to be a good relationship between the two. I think Parkinson’s UK and other organisations are uniquely placed to do this. Parkinson’s UK acts as an honest broker, bringing together people from across the UK, ensuring a representative sample of people with Parkinson’s at different stages are included in the process.
Final thoughts
Gillian: I can really recommend people with Parkinson’s getting involved with pharma in this way and I hope that researchers can see the benefits themselves in doing this. Certainly the feedback we had was that it had been really useful and gave the company ideas on improving their product — and therefore benefit us!
Neil: It was very enjoyable to help a company make, hopefully, the right decisions to deliver the proposed medication. The UCB staff were open to all our thoughts and ideas and were genuinely looking to get the most from the day. It certainly was not a box ticking exercise for them but an important part of the process. Some people came with their partners, who also contributed to the process. This highlighted that people were not under pressure to travel on their own.
About the authors
Gillian is a research involvement volunteer with Parkinson’s UK and was diagnosed with Parkinson’s 18 months ago.
Neil was diagnosed with Parkinson’s in February 2018. “My home is on the North coast of Scotland near John O’Groats. I am enjoying retirement and have a wee part time job walking dogs which helps keep my exercise levels up. I enjoy my role as a research volunteer with Parkinson’s UK.”
