Towards better treatments: working with pharma

How a new type of partnership is bringing the voice of those affected by Parkinson’s into pharmaceutical research.

Times are changing. Today we understand more than ever that to bring us closer to a cure and better treatments for Parkinson’s there needs to be collaborative working across the whole research community.

“We all want a drug that will slow, stop or even reverse Parkinson’s, but progress seems so slow. Clinical trials need to be speeded up; more money needs to be invested in drug development… co-ordination of developments worldwide must be improved… If this is already happening, tell us about it… we all need the reassurance that a major co-ordination effort is in place…”

— David, Research Support Network member

Since 1969, Parkinson’s UK has been working with academic researchers and institutions. But the community is much broader and we can speed up research by partnering with other Parkinson’s charities both here and internationally, and by supporting a new type of collaboration with pharmaceutical companies.

Your views on pharma

Recently we asked over 500 people affected by Parkinson’s for their views on pharmaceutical companies and what words they would use to describe these companies.

While there were words that have become synonymous with industry such as ‘profit’, ‘money’ and ‘secrecy’, people also shared an overwhelming number of positive words:

The pharmaceutical industry is uniquely equipped with the expertise, infrastructure and resources to develop new treatments. They are indeed ‘necessary’ and ‘important’ as they are in a position to finance expensive late stage clinical trials that are out of the reach of charities and most other organisations, and it is through their work that we have ‘hope’ of better treatments and a cure for Parkinson’s.

What these companies are lacking is a deep understanding of what it’s like to live with Parkinson’s or many other health conditions. Indeed, in our survey only 13% of people said they thought pharmaceutical companies understood the needs of people affected by Parkinson’s. But by working in partnership with those affected by Parkinson’s we are starting to see a change.

Better research, better outcomes

For over two years, Parkinson’s UK has supported academic researchers to work in partnership with people affected by Parkinson’s in the planning, designing, managing and dissemination of health research. This is known as Patient and Public Involvement (PPI) in research and it aims to make research more relevant, effective and accessible — this ultimately means it will deliver better outcomes like new treatments faster.

We have supported involvement in over 120 research studies so far and 95% of the researchers have told us that working with people affected by Parkinson’s in this way had a positive impact on their research. And it’s not just academic research that is starting to benefit from the expert insight of what it is like to live with a condition — now pharma is getting involved.

Part of a global movement

Over the last few years, a growing community of pharmaceutical companies has formed to partner with people affected by health conditions in a new way to ensure that medicines are more relevant, effective and more likely to benefit patients. This community are working together as part of a growing number of consortia and public/private partnerships that bring the voice of those with conditions like Parkinson’s to the forefront.

Patient Focused Medicines Development (PFMD) is one such example, and is a collection of pharmaceutical companies, health organisations and patient organisations. PFMD was established three years ago and aims to transform the way patients are involved in the design and development of research and medicines globally.

In January 2017, Parkinson’s UK became the first UK patient organisation to join PFMD and has since worked with PFMD to share experience, best practice and resources to ensure that industry has the know-how and the tools to work in partnership with patients at each stage of the medicines development process.

And people affected by Parkinson’s are keen to engage with industry too. When asked if they would like the opportunity to share their views and experiences with pharmaceutical companies to help them develop new treatments for Parkinson’s, 60% said yes and another 27%, maybe.

Help us deliver new treatments faster

With the cost of developing a single new treatment for Parkinson’s likely to exceed £1billion, it’s more important than ever for all stakeholders to co-operate, share experience and ideas and combine resources to ensure investments are used wisely and address the needs of those with the condition.

So, in 2018 and beyond, we are aiming to support more pharmaceutical companies to work in partnership with people affected by Parkinson’s to deliver new and better treatments faster. But to do this we need your help — whoever you are and whatever your connection to Parkinson’s, we need you to get involved in research:

• to give researchers the best chance to understand the lives, challenges and hopes of people affected by Parkinson’s.
• to help those developing and managing Parkinson’s clinical trials to understand how they can design their trials sensitively to enable more people with Parkinson’s to take part.
• to ensure that industry outcomes and success measures to be based on the everyday life of people with Parkinson’s.

· TO DELIVER BETTER TREATMENTS FASTER