ArticleHealth expectations : an international journal of public participation in health care and health policy2020
Utilizing patient advocates in Parkinson's disease: A proposed framework for patient engagement and the modern metrics that can determine its success.
Article in Health expectations : an international journal of public participation in health care and health policy, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. Cited by 20 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
20 citing papers in PubMed, 1 synthesis or guideline pooled it, 28 citations in OpenAlex.
- Disparities in Access to Deep Brain Stimulation for Parkinson's Disease and Proposed Interventions: A Literature Review.Stereotactic and functional neurosurgery · 2024Pooled it
- Lessons Learned from a Parkinson's Research Patient Advisory Board Model with Academic Centers.Progress in community health partnerships : research, education, and action · 2025Article
- A model to address healthcare gaps and poor research participation in Hispanic patients with Parkinson's disease.Frontiers in aging neuroscience · 2025Article
- Involving People With Lived Experience in Electronic Health Record Database Studies Reflections and Learning From the CHOOSE Study.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- Co-designing a participatory evaluation of older adult partner engagement in the mcmaster collaborative for health and aging.Research involvement and engagement · 2024Article
- Article
- Article
- A rocky road but worth the drive: A longitudinal qualitative study of patient innovators and researchers cocreating research.Health expectations : an international journal of public participation in health care and health policy · 2023Article
- Development and early qualitative evidence of two novel patient-reported outcome instruments to assess daily functioning in people with early-stage Parkinson's.Journal of patient-reported outcomes · 2023Article
- Moving the Dial Toward Equity in Parkinson's Disease Clinical Research: a Review of Current Literature and Future Directions in Diversifying PD Clinical Trial Participation.Current neurology and neuroscience reports · 2022Review
- Monitoring and Evaluation of Patient Engagement in Health Product Research and Development: Co-Creating a Framework for Community Advisory Boards.Journal of patient-centered research and reviews · 2022Article
- Co-creation of practical "how-to guides" for patient engagement in key phases of medicines development-from theory to implementation.Research involvement and engagement · 2021Article
- Shortening and validation of the Patient Engagement In Research Scale (PEIRS) for measuring meaningful patient and family caregiver engagement.Health expectations : an international journal of public participation in health care and health policy · 2021Article
- Evaluation of patient engagement in medicine development: A multi-stakeholder framework with metrics.Health expectations : an international journal of public participation in health care and health policy · 2021Article
- Knowledge, Responsibilities, and Peer Advice From Care Partners of Patients With Parkinson Disease Psychosis.Frontiers in neurology · 2021Article
- Utilizing patient advocates in Parkinson's disease: A proposed framework for patient engagement and the modern metrics that can determine its success.Health expectations : an international journal of public participation in health care and health policy · 2020Article
- Patient advocates respond to 'Utilizing Patient Advocates…' by Feeney et al.Health expectations : an international journal of public participation in health care and health policy · 2020Article
- 23.4 Briefing.Health expectations : an international journal of public participation in health care and health policy · 2020Article
- Partnering to power progress towards a paradigm shift: Response to Riggare et al.Health expectations : an international journal of public participation in health care and health policy · 2020Article
- Erratum.Health expectations : an international journal of public participation in health care and health policy · 2020Article
Corrections and comments
- Commented on by
- Erratum issuedErratum.2020
Authors and funding
6 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
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.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.