Progress made in partnership between pharma and people with Parkinson's

The initiative, called the Patient Engagement Council for Parkinson’s Research, was set up in 2021. It has recently identified a priority area where the involvement of people with Parkinson's could ensure the delivery of medications that better meet the needs of people with the condition.

From drug effectiveness to drug value

When it comes to developing new drug treatments, pharmaceutical companies are now, more than ever, recognising the expertise that people living with a condition can bring to the table. 

Clinical trials help develop our understanding of how a new drug works. All the medical, technical and scientific information is used to build a profile of that drug.

Traditionally, companies would look to develop a “target product profile” for a new drug, demonstrating its value by features such as the drug’s safety and effectiveness. Today, there is also an increasing focus on the value of that drug to the people who might one day take it, something known as the target patient value profile (TPVP).

But even though a TPVP is designed with the patient in mind, they have largely been developed in partnership with clinical and lab-based researchers and expert healthcare professionals, with little or no participation of people living with the condition. This has meant a vital piece of the picture has been missing. 

Now, the Patient Engagement Council for Parkinson's Research aims to address this by setting out where and how patients should be involved to inform and co-create the development of TPVPs in the future.

Marc van Grieken is a patient advocate from the UK. He was diagnosed with Parkinson’s in 2006 and currently sits on the council. 

Mark says: 

"Research with proactive, continuous and equitable involvement of people with Parkinson’s will get to the solution much sooner than research without such involvement. 

"Through participating in initiatives such as the Patient Engagement Council for Parkinson’s Research, I may ultimately be able to express an opinion about success, limitation or even failures of patient engagement."  

Nikul Bakshi, Research Involvement Manager at Parkinson’s UK, says:

"We believe that people with Parkinson’s should be involved in shaping all stages of research. In our partnership with UCB, we are focusing on enabling people with Parkinson’s to co-create a framework that is of vital importance in how new medicines are profiled and developed."