Patient Participation in Health Research
Research With and for People With Spinal Cord Injuries
Bibliographic Data
| ID | 5454808 |
|---|---|
| Authors | Tineke Abma (0000-0002-8902-322X, Maastricht University, corresponding author), Tineke A Abma (Department of Healthcare Ethics and Philosophy, University of Maastricht, the Netherlands) |
| Year | 2005 |
| Volume | 15 |
| Issue | 10 |
| Pages | 1310-1328 |
| Publication date | 2005-12-01 |
| Peer Reviewed | Yes |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | Qualitative Health Research (JOURNAL) |
| Journal identifiers | ISSN: 1049-7323 • E-ISSN: 1552-7557 |
| Publisher | SAGE Publications Inc (PUBLISHER) |
| DOI | 10.1177/1049732305282382 |
| PMID | 16263914 |
| OpenAlex | W2145976877 |
| Language | EN |
| Citations received | 24 |
| References cited | 26 |
Traditionally, patients are rarely seen as partners in health research; their influence on priority setting, research design, the undertaking of research, and interpretation and dissemination of findings was marginal. Nowadays, health researchers, funding agencies, governments, and patient organizations are beginning to acknowledge that the passive role of patients in health research is no longer satisfactory. The emerging commitment and consensus concerning the aims and features of patient participation in research have created a need for an appropriate method to engage patients as partners in health research. In this article, the author argues that a responsive-constructivist approach to evaluation fits with the aims and features of patient participation. She illustrates its potential with a case example that concerns a dialogue among patients and (clinical) researchers in the field of spinal cord injuries. She reflects on learning experiences and the (un)expected difficulties and potentials in creating social conditions for patient participation in health research
Constructivist grounded theory · Grounded theory · Medical education · Political science · Public relations · Qualitative research · Social science · Sociology · Health Policy Implementation Science · Interprofessional Education and Collaboration · Medicine · Mental Health and Patient Involvement · Nursing · Psychology
The Burwood Academy
A Systematic Review of the Impact of Patient and Public Involvement on Service Users, Researchers and Communities
A user‐led consultation model
The power of difference in inclusive research
Epistemic in/justice in patient participation. A discourse analysis of the Dutch ME/CFS Health Council advisory process
Patient-expert partnerships in research
Mapping the impact of patient and public involvement on health and social care research
The impact of patient and public involvement in the work of the Dementias & Neurodegenerative Diseases Research Network (DeNDRoN)
Do not forget the professional – the value of the FIRST model for guiding the structural involvement of patients in rheumatology research
Patient participation in fundamental psychiatric genomics research
Patient participation as dialogue
Collaboration and co‐ownership in research
Patient issues in health research and quality of care
Coming from two different worlds—A qualitative, exploratory study of the collaboration between patient representatives and researchers
Perspectives of researchers and clinicians on patient and public involvement (PPI) in preclinical spinal cord research
Patient involvement in research programming and implementation
Is Co-production Just a Pipe Dream for Applied Health Research Commissioning? An Exploratory Literature Review
Clients’ Initiatives and Caregivers’ Responses in the Organizational Dynamics of Care Delivery
Patients as Partners in Responsive Research
From Subject to Participant
Examining the Co-impact of Participatory Action-Oriented Research. Bringing Hidden effects to the Surface. A Case Study
Walking the Talk
Accepting Disability
What Does It Mean to Be a Patient Research Partner? An Ethnodrama
Standards-Based & Responsive Evaluation
Science's new social contract with society
The Wounded Storyteller
Transdisciplinarity
Fourth-Generation Evaluation
Dialogue on Dialogue
Rhetorical Spaces
Dialogue in Evaluation
Dialogue in Evaluation
A Postscript on Thinking about Dialogue
Assessment of Health Technologies
The Implications of Diversity and Disability for Evaluation Practice
Focus Group Design and Group Dynamics
Invisible Ubiquity
Writing at the Margin
Storytelling as Inquiry in a Mental Hospital
The struggle against neuromuscular diseases in France and the emergence of the "partnership model" of patient organisation
| Unique citing works | 24 |
|---|---|
| Citations per year | 1,26 |
| Citation span | 2007 - 2024 (18) |
| Citation velocity | recent |
| Highly cited | No |
| Citation types | Neutral: 23 |