As health care systems continue to evolve and establish patients as the primary stakeholder in their health care decision making, the pharmaceutical industry will need to be innovative to demonstrate the value of their products relative to the outcomes experienced by patients. Pharmaceutical companies should recognize the value of involving patients across the entire product life cycle and work to transform present perceptions and practices throughout their organizations.
The wide application of patient engagement and its associated benefits has increased across government, academic and pharmaceutical research. However, neither an identified standard practice for the process of engagement, nor utilization of common metrics to assess associated outcomes, exists. Parkinson's Foundation developed a patient engagement framework and metrics to assess engagement within the academic research and drug development sectors. This approach was developed over the course of several years through assessing the literature, acquiring feedback from researchers and people with Parkinson's disease and adapting practices to be relevant and generalizable across patient engagement projects. This framework includes the: 1) creation of a scope of work, 2) establishment of guiding principles, 3) selection and training of participants, 4) co‐determination of project metrics, 5) execution of the project and 6) dissemination of project findings. Parkinson's Foundation has also worked with academic, government and pharmaceutical stakeholders to identify metrics that assess both the quality of patient engagement and outcomes associated with patient engagement on projects. By improving patient engagement project methodologies and metrics, global clinical trials can have access to evidence‐based patient engagement practices to more efficiently capture the needs of, and potentially benefit, the patient community.
| 975 LETTER TO THE EDITOR patient engagement projects. The patient advocates involved successfully changed study protocol, resulting in a complete restart of the study months after it originally launched. This project was so successful that we had many other patient engagement partnerships with the same company, including one that I engaged in. I took this example, along with others, and shared it with a couple hundred people in another division of the company to educate them about how best to collaborate with people in their disease communities. I have worked with multiple patient-focused organizations and with dozens of advocates of all backgrounds and perspectives. Most of these advocates and organizations welcome collegial fact-based dialogue as we try to solve the same problems. We do too. We encourage all readers to read our paper. Ask questions. Give feedback. And we encourage you to consider: just as people living with a condition are first and foremost people (never 'just patients'), with all the richness of life experiences and knowledge that we all have, similarly, 'academics' and 'charity officers' are more than just people doing a job. Many of them are driven to this field by firsthand experience with health conditions and motivated to stay in these fields and advocate alongside the community out of deep emotional connections. This work is important to all of us. We all have too much on the line.
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