People-powered research: partnering with pharma to accelerate treatments

How we’re supporting pharmaceutical companies to work with people affected by Parkinson’s to improve research.

Research is changing. The expertise of people living with health conditions is increasingly being recognised as crucial to the development of new medicines. And Parkinson’s UK is at the forefront of this shift towards patient-centred research — bringing companies together with people affected by Parkinson’s to find better treatments and a cure.

The pharmaceutical industry plays a vital role in the development of new treatments for Parkinson’s. They are uniquely positioned with the expertise and financial resources to be able to conduct large scale clinical trials that are needed to bring new treatments to the clinic. They also have a key role to play in early stage drug development. But these highly specialised global companies can struggle to connect with the people they are working for — people with conditions like Parkinson’s.

That’s where we come in — to bridge the gap between companies and people affected by Parkinson’s, and help them work in partnership to develop new medicines that meet the needs of people living with the condition.

Why work with industry?

In 2017, we asked members of our Research Support Network for their views on the pharmaceutical industry. Over 500 people responded to the survey.

Over 90% of people said they wanted Parkinson’s UK to work with pharma to help them develop new treatments for Parkinson’s. They felt like Parkinson’s UK have the expertise to be able to work with pharma and ensure the needs of people affected by Parkinson’s are represented.

Importantly, people also told us that they wanted the opportunity to work with industry to help them develop new treatments for Parkinson’s. Many felt pharma didn’t really understand the needs of people affected by Parkinson’s.

So we began thinking about how we could support industry with involvement. One of the first things we did was joining Patient Focused Medicines Development (PFMD) in January 2017. This global coalition is spearheading the way people affected by health conditions are involved in research. Being involved has helped us learn more about how to work with industry. We’ve also shared our expertise, enabling people affected by Parkinson’s to play a role in shaping global standards for patient involvement.

Just two years on and we have already worked with three different pharmaceutical companies to involve people affected by Parkinson’s in their research programmes. We share two examples of our work below.

A pioneering partnership to improve clinical trials

In January 2018 we began our first partnership with pharma — working with UCB, a global biopharmaceutical company with a focus on neurology and immunology.

The purpose of the partnership

UCB wanted to explore how they could involve people affected by Parkinson’s in their research programme. Their neurology research team wanted to better understand the needs and wants of people affected by Parkinson’s, so that they could develop better treatments for the condition. They also recognised the importance of working with people affected by Parkinson’s to design better clinical trials to test these new treatments. Together we identified several projects we could collaborate on, and a partnership was formed.

How we are working together

We are supporting UCB on several different projects, which together are helping to ensure that the voices of people affected by Parkinson’s are included at each stage of UCB’s clinical trials programme. Our projects so far include:

• A workshop with people affected by Parkinson’s to discuss the design of a potential phase 2 clinical trial
• An ongoing project, in collaboration with Parkinson’s Foundation, with six ‘patient advisors’ who are helping develop better ways to measure the benefits of new treatments tested in clinical trials
• A second workshop with people affected by Parkinson’s to better understand people’s experiences of taking medication
• A consultation with a small group of people affected by Parkinson’s to get their thoughts on the design of a potential phase 1 clinical trial

Impact of working together so far

The collaboration has already had wide ranging impact, not only for UCB’s research, but also for the organisation themselves and, importantly, for people affected by Parkinson’s who have been involved.

UCB has gained a better understanding into what it is like to live with Parkinson’s, and the challenges of taking part in research. They have received detailed feedback on specific aspects of their clinical trials programme which is helping them improve the design of their research.

Over the course of the partnership, UCB have learned more about how they can involve people affected by Parkinson’s in their research, and have gained valuable insight into the processes involved when working with patients and patient organisations.

People affected by Parkinson’s have said they found it empowering to work with a pharmaceutical company and to share their thoughts and experiences with the scientists and research teams who are developing new treatments. People have enjoyed the opportunity to learn about UCB, and to work in partnership to help shape the future of Parkinson’s research.

The research teams at UCB are incorporating the insights from people affected by Parkinson’s into their Parkinson’s research and development programme, ensuring that the knowledge gained through the different activities is shared across the organisation.

We continue to work closely with UCB to explore further opportunities for people affected by Parkinson’s to help shape their research and improve the outcomes of clinical trials.

Uniting to bring forward a vaccine for Parkinson’s

In June 2018, we started a partnership with biotech company United Neuroscience. The company is developing a vaccine for the treatment of Parkinson’s. The vaccine has been tested in the lab, and when we started working together the research team were in the process of planning clinical trials to test the vaccine in people with Parkinson’s.

The purpose of the partnership

United Neuroscience wanted to better understand the needs of people affected by Parkinson’s to improve their research programme. The company wanted to work with people affected by Parkinson’s to design research that is accessible and useful for people with the condition.

How we are working together

To support United Neuroscience to work with people affected by Parkinson’s, we set-up a patient and public involvement (PPI) advisory group.

Three people affected by Parkinson’s sit on the group as PPI advisors. The advisory group meets every few months to discuss various topics related to Parkinson’s and the United Neuroscience research programme. Meetings are facilitated by the Parkinson’s UK research involvement team.

Impact of working together so far

The PPI advisors have provided important insights on a number of topics related to United Neuroscience’s work, including:

• Reviewing documents for study participants (including study information sheets and consent forms) and providing feedback for future trials
• Advising on the assessments to be included in a clinical study and the most relevant outcome measures to focus on
• Giving feedback on the United Neuroscience website to help ensure it is easily accessible and provides enough information for people affected by Parkinson’s

The PPI advisory group has also had a significant impact on the way that United Neuroscience are approaching their Parkinson’s research programme. It has helped the team to better understand the needs of people affected by Parkinson’s, and has prompted them to amend the language they use in their protocols — they changed references to research ‘subjects’ to research ‘participants’, in recognition of the value that people taking part in research bring.

Driving forward global standards for patient involvement

We’re really proud of what we have achieved so far in bringing together the pharmaceutical industry and people affected by Parkinson’s to work together. It’s also fair to say that it has been challenging — and we’ve learned a lot along the way. Working with industry has meant getting to grips with new ways of working and understanding the strict regulations that govern how companies work with patients and the public. We’ve also had to adapt — for instance by developing new training materials to support people affected by Parkinson’s to get involved.

Collaborating to support people affected by health conditions to be involved in research is still pretty new territory for charities and companies. As one of the first charities to embrace this challenge, we’ve worked with other organisations in the UK and beyond to share experiences and develop best practice. Some of the things our team and people affected by Parkinson’s have contributed to the development of so far include:

• the Patient Engagement Quality Guidance, a tool to help organisations plan and evaluate involvement activities
• a sourcebook to support pharmaceutical companies in working with patients and patient organisations
• guidance for charities on how to support patient and public involvement in industry-led research
• a toolkit to help researchers write plain language summaries for journal articles

As we look forward to our work over the next few years, we are keen to expand on this area of our patient and public involvement programme and continue to develop partnerships with companies. By working together, with people affected by Parkinson’s, we will improve Parkinson’s research, ensuring it is more efficient, more successful, and focused on the needs of those affected by the condition.

Want more information?

For researchers
To find advice and guidance on how you can involve people affected by Parkinson’s in your research visit our website — parkinsons.org.uk/research/patient-and-public-involvement-ppi

For people affected by Parkinson’s
If you would like to share your views and experiences to help shape research, visit our website to find out how you can get involved — parkinsons.org.uk/research/volunteer-help-shape-research

Read more blog posts in this series

• People with Parkinson’s can help shape research through patient and public involvement (PPI) — read the blog post to find out more.
• We’re helping researchers and people affected by Parkinson’s to work in partnership — find out how we provide hands on support.
• Matthew reflects, as a person with Parkinson’s, about the role of involvement in research — read the blog post.