ArticleHealth expectations : an international journal of public participation in health care and health policy2018
What do stakeholders expect from patient engagement: Are these expectations being met?
Article in Health expectations : an international journal of public participation in health care and health policy, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 16 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
16 citing papers in PubMed, 1 synthesis or guideline pooled it.
- The immaturity of patient engagement in value-based healthcare-A systematic review.Frontiers in public health · 2023Pooled it
- Bridging the gap: empowering patients as research partners through a structured training program.Research involvement and engagement · 2025Article
- Patient engagement in clinical trial design for rare neuromuscular disorders: impact on the DELIVER and ACHIEVE clinical trials.Research involvement and engagement · 2024Article
- Exploring patient and caregiver perceptions of the meaning of the patient partner role: a qualitative study.Research involvement and engagement · 2023Article
- Stakeholders' expectations of precision medicine: A qualitative study to identify areas of (mis)alignment.Health science reports · 2023Article
- Using Patient Perspectives to Inform Better Clinical Trial Design and Conduct: Current Trends and Future Directions.Pharmaceutical medicine · 2023Review
- Adopting recommendations for implementing patient involvement in cancer research: a funder's approach.Research involvement and engagement · 2023Article
- Health technology assessment 2025 and beyond: lifecycle approaches to promote engagement and efficiency in health technology assessment.International journal of technology assessment in health care · 2023Article
- NCI's publication affiliation conundrum: Reframing innovation to incentivize an equitable path for advocate representation.Translational oncology · 2022Article
- Potential Barriers of Patient Involvement in Health Technology Assessment in Central and Eastern European Countries.Frontiers in public health · 2022Article
- A Systematic Review of Patient Engagement Experiences in Brain Disorders.Patient related outcome measures · 2022Review
- Sustaining Meaningful Patient Engagement Across the Lifecycle of Medicines: A Roadmap for Action.Therapeutic innovation & regulatory science · 2021Article
- 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
- Understanding multi-stakeholder needs, preferences and expectations to define effective practices and processes of patient engagement in medicine development: A mixed-methods study.Health expectations : an international journal of public participation in health care and health policy · 2021Article
- Patient Preference Studies During Early Drug Development: Aligning Stakeholders to Ensure Development Plans Meet Patient Needs.Frontiers in medicine · 2019Article
- What do stakeholders expect from patient engagement: Are these expectations being met?Health expectations : an international journal of public participation in health care and health policy · 2018Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
8 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundMeaningful patient engagement (PE) in medicines development and during the life cycle of a product requires all stakeholders have a clear understanding of respective expectations.
objectiveA qualitative survey was undertaken to understand stakeholder expectations.
designThe survey explored 4 themes from the perspective of each stakeholder group: meaning, views, expectations and priorities for PE. Participants were grouped into 7 categories: policymakers/regulators; health-care professionals (HCPs); research funders; payers/purchasers/HTA; patients/patient representatives; pharmaceutical/life sciences industry; and academic researchers.
resultsFifty-nine interviews were conducted across a range of geographies, PE experience and job seniority/role. There was consensus across stakeholders on meaning of PE; importance of promoting PE to a higher level than currently; need for a more structured process and guidance. There was little consensus on stakeholder expectations and roles. Policymakers/regulators were expected by others to drive PE, create a framework and facilitate PE, provide guidelines of good practice and connect stakeholders, but this expectation was not shared by the policymakers/regulators group. HCPs were seen as the link between patients and other stakeholders, but HCPs did not necessarily share this view. DISCUSSION AND
conclusionsDespite broad stakeholder categories, clear themes emerged: there is no "leader"; no stakeholder has a clear view on how to meaningfully engage with patients; there are educational gaps; and a structure and guidance for PE is urgently required. Given the diversity of stakeholders, there needs to be multistakeholder collaborative leadership. Effective collaboration requires consensus on roles, responsibilities and expectations to synergize efforts to deliver meaningful PE in medicines life cycle.
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.