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Evaluation of the Establishment of a Public and Patient Involvement and Engagement Group to Support Clinical Trials in Pakistan: Protocol for a Mixed-Methods Study [version 2; peer review: 2 approved] [PDF]

Wellcome Open Research
Background Patient and public involvement and engagement (PPIE) in research is a collaboration between researchers, patients, and the public, enhancing research acceptability, relevance, and impact.
Monaza Khan, Shehla Farooq, Srinivas Murthy, Nikhat Ahmed, Saima Saleem, Adnan Masood, Shahnaz Zaman, Zahyd Shuja, Arishay Hussaini, Timo Tolppa, Arjen M Dondorp, Madiha Hashmi   +11 more
doaj   +2 more sources

How to engage patient partners in health service research: a scoping review protocol

Research Involvement and Engagement, 2021
Background The patients’ and the carers’ roles in health service research has changed from being solely participants in studies to also being active partners and co-designers in the research process. Research carried out with or by patient partners is an
Sarah Cecilie Tscherning, Hilary Louise Bekker, Tina Wang Vedelø, Jeanette Finderup, Lotte Ørneborg Rodkjær   +4 more
doaj   +1 more source

Developing and testing guidance to support researchers engaging patient partners in health-related research

Research Involvement and Engagement, 2022
Plain English summary More and more patients are taking part in research as patient partners. However, researchers have little guidance on how to bring patient partners into research studies and at what levels. There are many ways to do this.
Jeanette Finderup, Louise Engelbrecht Buur, Sarah Cecilie Tscherning, Annesofie Lunde Jensen, Anne Wilhøft Kristensen, Anne Poder Petersen, Bente Skovsby Toft, Gitte Susanne Rasmussen, Pernille Skovlund, Tina Wang Vedelø, Lotte Ørneborg Rodkjær   +10 more
doaj   +1 more source

Conceptualising, operationalising, and measuring trust in participatory health research networks: a scoping review

Systematic Reviews, 2022
Background There are many described benefits of community-based participatory research (CBPR), such as increased relevance of research for those who must act on its findings.
Meghan Gilfoyle, Anne MacFarlane, Jon Salsberg   +2 more
doaj   +1 more source

Public and Patient Involvement in Doctoral Research During the COVID-19 Pandemic: Reflections on the Process, Challenges, Impact and Experiences From the Perspectives of Adults With Cerebral Palsy and the Doctoral Researcher

Frontiers in Rehabilitation Sciences, 2022
IntroductionCerebral palsy (CP) is a lifelong condition, where people may experience complications as they age. Including the views of people with CP through Public and Patient Involvement (PPI) ensures that research into the condition is relevant and ...
Manjula Manikandan, Kevin Foley, Jessica Gough, Sarah Harrington, Éabha Wall, Fiona Weldon, Jennifer M. Ryan, Jennifer M. Ryan, Claire Kerr, Aisling Walsh, Jennifer Fortune   +10 more
doaj   +1 more source

The development of PROmunication: a training-tool for clinicians using patient-reported outcomes to promote patient-centred communication in clinical cancer settings

Journal of Patient-Reported Outcomes, 2020
Background The value of using real-time patient-reported outcome (PRO) measures in cancer communication has gained attention both in the clinic and in research.
Pernille C. Skovlund, Sissel Ravn, Lene Seibaek, Henriette Vind Thaysen, Kirsten Lomborg, Berit Kjærside Nielsen   +5 more
doaj   +1 more source

Maternal mental health: a key area for future research among women with congenital heart disease

Open Heart, 2023
In this viewpoint, we respond to the recently published national priorities for research in congenital heart disease (CHD) among adults, established through the James Lind Alliance Priority Setting Partnership, with specific attention to priority 3 ...
Paul F Clift, Nigel E Drury, Karin Eli, Caroline E Fox, Lucy E Hudsmith, Anna Lavis, James S Castleman, Donna Giles, Laura Grocott, Kirsty Harrison, Katharina Kaplan, Heather McDougall, Charlene Powell   +12 more
doaj   +1 more source

Co-designing new tools for collecting, analysing and presenting patient experience data in NHS services: working in partnership with patients and carers

Research Involvement and Engagement, 2021
Plain English summary The way we collect and use patient experience data is important because of concern that patients and carers may be excluded by the limited ways it is currently done in NHS services.
Nicola Small, Bie Nio Ong, Annmarie Lewis, Dawn Allen, Nigel Bagshaw, Papreen Nahar, Caroline Sanders, the DEPEND team   +7 more
doaj   +1 more source

Incorporating usability evaluation into iterative development of an online platform to support research participation in Parkinson’s disease: a mixed methods protocol

BMJ Open, 2023
Introduction Many people with Parkinson’s (PwP) are not given the opportunity or do not have adequate access to participate in clinical research. To address this, we have codeveloped with users an online platform that connects PwP to clinical studies in ...
Stephen Mullin, Edward Meinert, Camille B Carroll, John Whipps, Sue Whipps, Rebecca Chapman, Marie-Louise Zeissler, Kate Hockey, Philip Hockey   +8 more
doaj   +1 more source

Personal assistants in England and the factors associated with absenteeism

Frontiers in Public Health, 2022
Personal assistants (PAs) have become an increasingly important element of long-term care (LTC) in England since the introduction of Direct Payments in 1996 and the Care Act 2014 legislation.
Daniel Roland, Stephen Allan, Eleni Chambers, Eleni Chambers, Debs Smith, Debs Smith, Katerina Gousia   +6 more
doaj   +1 more source