Improving Kidney Disease Research in the Black Community: The Essential Role of Black Voices in the APOLLO Study
Year: 2022 Authors: Ana S. Iltis et al. See Resource
Article/Paper
“He Who Owns the Data, Owns the Patient,” Black Participants and Clinical Trials
Year: 2022 Authors: Breanna Reeves See Resource
“He Who Owns the Data, Owns the Patient,” Black Participants and Clinical Trials Read More »
Sharing space at the research table: exploring public and patient involvement in a methodology priority setting partnership
Year: 2023 Authors: Nikita N. Burke et al. See Resource
Public involvement could usefully inform ethical review, but rarely does: what are the implications?
Year: 2017 Authors: Kristina Staley and Jim Elliott See Resource
Who should I involve in my research and why? Patients, carers or the public?
Year: 2021 Authors: Kristina Staley, Jim Elliott, Derek Stewart and Roger Wilson See Resource
Who should I involve in my research and why? Patients, carers or the public? Read More »
Developing consensus on core outcome sets of domains for acute, the transition from acute to chronic, recurrent/episodic, and chronic pain: results of the INTEGRATE-pain Delphi process
Year: 2023 Authors: Giulia Bova et al. See Resource
Recommendations for the development, implementation, and reporting of control interventions in efficacy and mechanistic trials of physical, psychological, and self-management therapies: the CoPPS Statement
Year: 2023 Authors: David Hohenschurz-Schmidt et al. See Resource
Impact of sickle cell disease on patientsʼ daily lives, symptoms reported, and disease management strategies: Results from the international Sickle Cell World Assessment Survey (SWAY)
Year: 2020 Authors: Ifeyinwa Osunkwo et al. See Resource
Recognizing patient partner contributions to health research: a systematic review of reported practices
Year: 2023 Authors: Grace Fox, Manoj M. Lalu, Tara Sabloff, Stuart G. Nicholls, Maureen Smith, Dawn Stacey, Faris Almoli &
Personal science in Parkinson’s disease. A patient-led research study.
Year: 2022 Authors: Sara Riggare See Resource
Personal science in Parkinson’s disease. A patient-led research study. Read More »
Developing a toolkit for increasing the participation of black, Asian and minority ethnic communities in health and social care research
Year: 2022 Authors: Azhar Farooqi, Karan Jutlla, Raghu Raghavan, Andrew Wilson, Mohammud Shams Uddin, Carol Akroyd, Naina Patel, Pamela Peggy
“He Who Owns the Data, Owns the Patient,” Black Participants and Clinical Trials
Year: 2022 Authors: Breanna Reeves See Resource
“He Who Owns the Data, Owns the Patient,” Black Participants and Clinical Trials Read More »
Patient involvement in preparing health research peer-reviewed publications or results summaries: a systematic review and evidence-based recommendations
Year: 2020 Authors: Lauri Arnstein, Anne Clare Wadsworth, Beverley Anne Yamamoto, Richard Stephens, Kawaldip Sehmi, Rachel Jones, Arabella Sargent, Thomas
Hidden in plain sight? Identifying patient-authored publications
Year: 2022 Authors: Jacqui Oliver, Dawn Lobban, Laura Dormer, Joanne Walker, Richard Stephens & Karen Woolley See Resource
Hidden in plain sight? Identifying patient-authored publications Read More »
Patient-Generated Hypotheses Journal Issue 1
Year: 2023 Authors: Patient-Led Research Collaborative See Resource
Patient-Generated Hypotheses Journal Issue 1 Read More »
Personalizing Research: Involving, Inviting, and Engaging Patient Researchers
Year: 2022 Authors: Dana Lewis See Resource
Personalizing Research: Involving, Inviting, and Engaging Patient Researchers Read More »
Patients as Partners in Research: There Is Plenty of Help for Researchers
Year: 2020 Authors: Alison M. Hoens, MSc, BScPT, Joletta Belton, MSc, Alex Scott, PT, PhD, Clare L. Ardern, PT, PhD
Patients as Partners in Research: There Is Plenty of Help for Researchers Read More »
A rocky road but worth the drive: A longitudinal qualitative study of patient innovators and researchers cocreating research
Year: 2023 Authors: Wannheden, C., Riggare, S., Luckhaus, J.L., et al. See Resource
My 5 top learnings from tracking my Parkinson for over a decade
Year: 2022 Authors: Sara Riggare See Resource
My 5 top learnings from tracking my Parkinson for over a decade Read More »
Reflections on patient engagement by patient partners: how it can go wrong
Year: 2023 Authors: Dawn P. Richards, Sabrina Poirier, Vina Mohabir, Laurie Proulx, Sue Robins & Jeffery Smith See Resource
Reflections on patient engagement by patient partners: how it can go wrong Read More »
Patient and public involvement in an international rheumatology translational research project: an evaluation
Year: 2022 Authors: Savia de Souza, Eva C. Johansson, Susanne Karlfeldt, Karim Raza & Ruth Williams See Resource
Patient-centered consultations for persons with musculoskeletal conditions
Year: 2022 Authors: Joletta Belton, Hollie Birkinshaw & Tamar Pincus See Resource
Patient-centered consultations for persons with musculoskeletal conditions Read More »
Culturally responsive health research: A collaborative design model for equitable and sustainable community impact
Year: 2021 Authors: Janice Elizabeth Tufte, Rachel E Dungan, Sharon Attipoe-Dorcoo See Resource
The sick-person rejects their disappearance
Year: 2021 Authors: Alex Haagaard See Resource
The sick-person rejects their disappearance Read More »
Being-in-the-Room Privilege: Elite Capture and Epistemic Deference
Year: 2021 Authors: Olúfẹ́mi Táíwò See Resource
Being-in-the-Room Privilege: Elite Capture and Epistemic Deference Read More »
A Healing Journey with Chronic Pain: A Meta-Ethnography Synthesizing 195 Qualitative Studies
Year: 2021 Authors: Francine Toye, PhD, Joletta Belton, MSc, Erin Hannink, DPT, Kate Seers, DSc, Karen Barker, PhD See Resource
Protocol for the development of guidance for stakeholder engagement in health and healthcare guideline development and implementation
Year: 2020 Authors: Petkovic, J., Riddle, A., Akl, E.A. et al. See Resource
Patients as Partners in Research: It’s the Right Thing to Do
Year: 2019 Authors: Joletta Belton, MSc, Alison Hoens, MSc, BScPT, Alex Scott, PT, PhD, Clare L. Ardern, PT, PhD See
Patients as Partners in Research: It’s the Right Thing to Do Read More »
Reciprocal relationships and the importance of feedback in patient and public involvement: A mixed methods study
Authors: Elspeth Mathie MA, PhD, Helena Wythe PhD, Diane Munday, Paul Millac MA, BChir. MD. FRCP, Graham Rhodes BA, A.C.I.I, Nick Roberts, Nigel Smeeton Msc
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