It is intolerable that a sea of ignorance continues to shroud Parkinson’s disease research and care. Progress remains stagnant and current approaches fail to deliver outcomes that truly matter to patients. At the heart of this problem is the lack of meaningful inclusion of the patient voice in research design and healthcare decision-making. The lived experience of patients must shape the path to better treatment and a cure.
The Status Quo: Patients as Passive Participants
Parkinson’s research and care systems are often misaligned with the real needs of individuals living with the disease. When we look at the work of other Parkinson’s non-profit organizations, we see one consistent message to patients: “Help find the cure! Participate in clinical trials!” While clinical trials encourage patient participation, they typically view patients merely as test subjects — “white mice in the lab.” This approach fails to harness the valuable insights that only people with firsthand, lived experience of Parkinson’s can provide.
Efforts by some organizations to involve beneficiaries in program design are a step in the right direction. Initiatives like the Patient-Centered Outcomes Research Institute (PCORI) have demonstrated that prioritizing outcomes meaningful to patients can reshape healthcare and research landscapes. However, such models are not yet widely adopted in Parkinson’s research. The lived experiences of patients remain largely untapped in forming hypotheses, prioritizing research topics, and designing clinical studies.
A Reservoir of Untapped Frustration
Through outreach, we’ve discovered an extraordinary level of frustration among patients, families, and even clinicians. This collective energy remains unorganized and underutilized. Patients feel unheard, and their unique insights into the disease go ignored in favor of traditional, often ineffective approaches. This must change.
Patients feel unheard, and their unique insights into the disease go ignored in favor of traditional, often ineffective approaches. This must change.
Steps Towards a Solution: Elevating the Patient Voice
Resolve Parkinson’s is committed to disrupting the stagnation in Parkinson’s research by ensuring that patient voices are central to the process. We aim to create a movement that prioritizes the lived experience of Parkinson’s patients in research and system design.
Our strategies include:
- Advocacy for Inclusion: Lobbying to make the inclusion of patient lived experience mandatory in publicly funded research and a best practice for private research initiatives.
- Creating Collaborative Learning Communities: Bringing together patients with lived experience, clinicians, and researchers across specialties to collaborate and share insights.
By driving these changes, we aim to align research priorities with what truly matters to patients, fostering breakthroughs that reflect the real-world patient challenges and needs of those living with Parkinson’s.
