Patient Engagement Council for Parkinson’s Research

Reflections on winning the Made with Patients Award: our journey in Parkinson's disease

Vandenbruaene Nathalie — Wed, 29 May 2024 11:27:45 +0000

Reflections on winning the Made with Patients Award: our journey in Parkinson's disease

Kate Trenam, Patient Engagement - Early Research

Vandenbruaene … Wed 29/05/2024 - 13:27

With immense pride and humility, ��ֳ�’s Patient Engagement Council for Parkinson’s Research (PECPR) initiative has been selected as a winner of the second edition of the Made with Patients Awards. “Made with Patients” is the first global award celebrating innovators in patient engagement. Hosted by Patient Engagement for Medicine Development (PFMD), the award recognizes outstanding contributions across medicine development, MedTech, digital health sectors, and more. It recognizes over two years of dedicated work in Parkinson’s by ��ֳ� and our partners, Parkinson’s Foundation and Parkinson’s UK.

For ��ֳ�, this also serves as a moment to reflect on our ongoing mission to transform care for those living with Parkinson’s.

The Challenges for Patients
The journey for patients with Parkinson’s is fraught with challenges, beginning with the often prolonged and complex diagnostic process. The odyssey from first symptoms to diagnosis can be a harrowing experience for patients and their families, marked by uncertainty and frustration.

Once a diagnosis is made, the road doesn’t get much easier. Current treatments primarily focus on managing symptoms1 without truly altering the disease's relentless progression. While these treatments provide necessary relief, they represent a compromise, not a victory, in the battle against Parkinson’s.

“The experience with the PECPR demonstrates that patients can make an impactful contribution to prioritization, planning, and programming of research. The Council created an open and constructive atmosphere attributing equal weight to the views of everyone participating. PECPR being awarded the Made with Patients award further encourages industry and patient organizations to see us for who we are,” said Marc van Grieken, Parkinson’s patient advocate.

The Path Less Trodden
At ��ֳ�, we have dared to challenge the status quo, driven by a belief that patients deserve more than symptomatic relief. This paradigm shift demands innovation, courage, and an unwavering commitment to scientific excellence. Our vision extends beyond the current landscape of treatment, aiming to pioneer therapies that can slow down or even halt the progression of these debilitating conditions.

The Importance of Partnership
Central to our approach is the principle of partnership, particularly the involvement of patients at every stage of drug development. This collaborative ethos is reflected in our alliances with industry leaders and research institutions, which amplify our capabilities and accelerate our progress towards transformative treatments.

Our partnership philosophy extends to include the most critical stakeholders of all—the patients themselves. From the early stages of research through to clinical trials and beyond, we integrate the patient voice into every facet of our work. We aim to work as true trusted partners with patients. This patient-centric approach not only enriches our understanding but ensures that our innovations truly meet the needs of those we serve.

“It is critical to the Parkinson’s Foundation to engage people with Parkinson’s as partners in everything we do. We are proud to be part of this council which puts the voice of people living with the disease at the forefront,” said John Lehr, President and Chief Executive Officer, Parkinson’s Foundation.

“Parkinson's UK is immensely proud of its longstanding partnership with ��ֳ�, Parkinson's Foundation, and the Parkinson's patient community. Our collaboration via the PECPR, showcases how industry, patient organisations and the patient community can work together towards positively impacting research for the benefit of the Parkinson's community,” said Nikul Bakshi, Research Involvement Manager, Parkinson’s UK.

Looking Forward
The path to a new treatment paradigm is long and fraught with challenges, but the Made with Patients Award serves as a beacon of encouragement, illuminating our way forward. It is a testament to the dedication of our teams and more importantly, the patients who have been involved in PECPR, including those who are no longer with us. This award serves as a reminder of the lives we strive to improve, and a spur to continue our pursuit of excellence.

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Capturing meaningful patient experiences in Parkinson’s research

Vanco Vlastimil (��ֳ� S.A.) — Tue, 19 Jul 2022 11:51:37 +0000

Capturing meaningful patient experiences in Parkinson’s research

Nick Francis, Global Communications & Company Reputation

Vanco Vlastimi… Tue 19/07/2022 - 13:51

Parkinson’s disease (PD) is an incurable neurodegenerative disorder that causes a range of motor and non-motor symptoms that begin gradually and worsen over time. Motor symptoms include unintended or uncontrollable movements, such as shaking, stiffness, and difficulty with balance and coordination. People may also have mental and behavioral changes, sleep problems, depression, memory difficulties, and fatigue.

Capturing the true problems associated with living with PD from the early stages of the disease is critical, as substantial research efforts are ongoing to develop disease modifying therapies, and associated important and meaningful outcome measures for those clinical trials.

Research specifically focused on the experience of people living with early-stage PD is limited and, to date, there is no consensus regarding the definition of early-stage PD among the scientific and regulatory communities. In addition, the clinical outcome assessments, used in clinical trials investigating early-stage PD, do not fully capture the subtle concepts meaningful to people with this disease.

��ֳ� partnered with Parkinson’s UK and the Parkinson’s Foundation to coinvestigate the patient experience in early stages of the disease. Six people living with PD were part of the research team and involved from developing the study design through to analyzing the data.

Interviews with people with the disease and their relatives, were used to identify, those primary symptoms and impacts, which might be more useful to measure in clinical trials.

“Involving patients in research is a symbiotic partnership; this is very much the case in my experience in working with ��ֳ�. Right at the onset, this partnership had been a two-way process,” said Carroll Siu, PD patient expert. “The nurturing and guidance from ��ֳ� in the last 5 years had allowed me to gain knowledge, skills and confidence, which I could now transpose to my engagement in future research projects. ��ֳ� gained from our patient involvement to such an extent that they have formed a Patient Engagement Council for Parkinson’s research by working closely with Parkinson’s charities to involve patients at the heart of future Parkinson’s research.”

We learned that the concepts that were most meaningful to people living with early-stage PD were:

bradykinesia/slowness (notably in the form of ‘functional’ slowness, with being slower at completing tasks reportedly more important than the difficulty of completing tasks)
tremor
rigidity/stiffness
effects on mobility (particularly fine motor/dexterity and subtle gait abnormalities)
fatigue
depression
sleep/dreams
pain

“Incorporating the lived expertise of six people living with Parkinson's added rich insights and key knowledge to this project,” said Karlin Schroeder, Associate Vice President of Community Engagement at the Parkinson's Foundation. “The Parkinson's Foundation is honored to be collaborators in this work, helping to guide patient engagement in research. We look forward to our ongoing work with ��ֳ�, Parkinson's UK and the community to advance science and improve the lives of people with Parkinson's.”

Our study adds to the low amount of qualitative research on early-stage PD. It showed that patient experiences in early-stage PD are complex and wide-ranging, and that currently available patient-reported outcome measures do not evaluate many early-stage PD concepts such as functional slowness, fine motor skills and subtle gait abnormalities. The inclusion of patients in the research team provided a unique perspective based on first-hand experience of how PD affects all aspects of patients’ lives, and how they feel about living with and managing their condition.

Going forward, we need new measures, created in conjunction with people with PD, that fully assesses symptoms and the experience of living with early-stage PD. For more information on the study, you can visit https://link.springer.com/article/10.1007/s40120-022-00375-3.

A plain language summary of the research is now available in Future Medicine. See below to find out more:

Plain language summary: what symptoms should be measured in clinical studies for early-stage Parkinson's? (futuremedicine.com)

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Parkinson's disease Patients research Patient Engagement Council for Parkinson’s Research

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World Parkinson’s Day 2022 - A patient centred model for Parkinson's research

Vanco Vlastimil (��ֳ� S.A.) — Mon, 11 Apr 2022 07:39:15 +0000

World Parkinson’s Day 2022 - A patient centred model for Parkinson's research

Nick Francis, Global Communications & Company Reputation

Vanco Vlastimi… Mon 11/04/2022 - 09:39

Last November ��ֳ�, Parkinson’s UK, and the Parkinson's Foundation in the U.S., announced that they had joined forces to establish a Patient Engagement Council for Parkinson’s Research (PECPR), building upon existing work they had been doing together for many years.

The aim of the council is to ensure that patient insights are central to the overall strategy and activities across ��ֳ�’s Parkinson’s disease research and early clinical development program. Through this collaborative partnership, the council aims to embed patient involvement in the earliest stages and throughout each step of ��ֳ�’s Parkinson’s drug development program to improve outcomes for people living with Parkinson’s.

In the last few months, the group has made great strides in focusing in on what areas they consider will have the greatest impact and value for people living with Parkinson’s. Topics discussed included decentralised research, the optimization of clinical trial design and experience, an understanding disease modification therapy, and patient informed Target Patient Value Profiles (TPVPs).

The PECPR adopted the Clinical Trials Transformation Initiative (CTTI) prioritisation tool, to help identify which of the focus areas presented high-value opportunities. These topics were then ranked further leading to a consensus on the top priorities. The group overwhelmingly agreed to concentrate initially on TPVPs, to embed early patient involvement and co-creation in the drug development process.

The purpose of a TPVP is to ensure that the drug development process is efficient and provides all the required relevant medical, technical, and scientific information for evaluating the viable outcome of a potential new medicine. Historically the early design of TPVP’s was largely driven by joint insights from clinical scientists, desk research and conversations with expert healthcare professionals, with little or no participation of people living with the condition.

To help address these issues the PECPR will look to build a transparent and robust process clearly setting out where and how patients should be involved to inform and co-create the development of TPVP’s in the future.

In order to bolster representation from the Parkinson’s community the PECPR has welcomed three people who live with Parkinson’s. Each of them has a very personal Parkinson’s story, and they described why they wanted to be involved with the group:

Carol Schulte, a patient advocate from the United States, living with Parkinson’s for over 20 years: “My primary motivator for joining the PECPR is to ensure that the development of TPVP’s are inclusive of all groups, taking into account the concerns and considerations of all people living with Parkinson’s. When I was diagnosed in 1998, so little was understood about Parkinson's, even by the medical profession, and I have been fascinated by the development of the Movement Disorders specialty.”
Harold de Wit, a patient advocate from the Netherlands, diagnosed with Parkinson’s in 2018: “When I first learned I had Parkinson’s my world collapsed, but along the way I managed to accept this fact. But acceptance is not resignation. I will fight this disease until the better end. By joining PECPR I can extend this fight and make it a collective battle of many against this terrible disease. Finding new therapies or even a cure against Parkinson’s is all about co-creation of the Parkinson’s community. Patients, healthcare professionals, pharmaceutical companies and foundations have to come together to make a stand. PECPR is a beautiful example of co-creation to join forces!”
Marc van Grieken, a patient advocate from the United Kingdom, diagnosed with Parkinson’s in 2006: “I firmly believe that research will in the end lead to finding a cure. Without research: nothing will happen. Research with proactive, continuous and equitable involvement of people with Parkinson’s will get to the solution much sooner than research without such involvement. Patient Engagement Councils can play a meaningful role in this but how do we know what is meaningful? Only through participating in initiatives such as the Patient Engagement Council of ��ֳ�, the Parkinson’s Foundation and Parkinson’s UK, may I ultimately be able to express an opinion about success, limitation or even failures of ‘patient engagement.’”

We look forward to providing more updates on the work of the group as we progress our ambitious agenda.

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Parkinson's disease World Parkinson's Day PECPR Patient Engagement Council for Parkinson’s Research Patients

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Patient Engagement Council for Parkinson’s Research

Reflections on winning the Made with Patients Award: our journey in Parkinson's disease

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Capturing meaningful patient experiences in Parkinson’s research

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World Parkinson’s Day 2022 - A patient centred model for Parkinson's research

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