Article/Paper

Patients as Partners in Research: There Is Plenty of Help for Researchers

Article/Paper / Deandra Taufik

Year: 2024 Authors: Alison M. Hoens, Joletta Belton, Alex Scott, Clare L. Ardern See Resource

Patients as Partners in Research: There Is Plenty of Help for Researchers Read More »

Stemming the tide: Investing early in the mental health of Ontario’s 7- to 12-year-olds

Article/Paper, Website / Deandra Taufik

Year: 2023 Authors: Various See Resource

Stemming the tide: Investing early in the mental health of Ontario’s 7- to 12-year-olds Read More »

Engaging youth and parents in clinical pediatric research: A case-based example

Article/Paper / Deandra Taufik

Year: 2023 Authors: Elise G Martin et al. See Resource

Engaging youth and parents in clinical pediatric research: A case-based example Read More »

Co-designing clinical trials alongside youth with chronic pain

Article/Paper / Deandra Taufik

Year: 2023 Authors: Zina Zaslawski et al. See Resource

Co-designing clinical trials alongside youth with chronic pain Read More »

Patient-driven research priorities for patient-centered measurement

Article/Paper / Deandra Taufik

Year: 2024 Authors: Howard, A.F., Warner, L., Cuthbertson, L. et al. See Resource

Patient-driven research priorities for patient-centered measurement Read More »

Conferences led by patients facilitate democratic decision making in healthcare

Article/Paper / Deandra Taufik

Year: 2024 Authors: Ajayi O, Gee P, Mulhall H, Richards D P, Riggare S. See Resource

Conferences led by patients facilitate democratic decision making in healthcare Read More »

Co-creating and hosting PxP: a conference about patient engagement in research for and by patient partners

Article/Paper / Deandra Taufik

Year: 2024 Authors: Dr. Dawn P Richards et al. See Resource

Co-creating and hosting PxP: a conference about patient engagement in research for and by patient partners Read More »

Patient engagement in a Canadian health research funding institute: implementation and impact

Article/Paper / Deandra Taufik

Year: 2024 Authors: Dr. Dawn P Richards et al. See Resource

Patient engagement in a Canadian health research funding institute: implementation and impact Read More »

Patient partner compensation in research and health care: the patient perspective on why and how

Article/Paper / Deandra Taufik

Year: 2018 Authors: Dawn P. Richards, Isabel Jordan, Kimberly Strain and Zal Press See Resource

Patient partner compensation in research and health care: the patient perspective on why and how Read More »

Reflections on patient engagement by patient partners: how it can go wrong

Article/Paper / Deandra Taufik

Year: 2023 Authors: Dawn P Richards et al. See Resource

Reflections on patient engagement by patient partners: how it can go wrong Read More »

Improving Kidney Disease Research in the Black Community: The Essential Role of Black Voices in the APOLLO Study

Article/Paper / Deandra Taufik

Year: 2022 Authors: Ana S. Iltis et al. See Resource

Improving Kidney Disease Research in the Black Community: The Essential Role of Black Voices in the APOLLO Study Read More »

“He Who Owns the Data, Owns the Patient,” Black Participants and Clinical Trials

Article/Paper / Deandra Taufik

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

Article/Paper / Deandra Taufik

Year: 2023 Authors: Nikita N. Burke et al. See Resource

Sharing space at the research table: exploring public and patient involvement in a methodology priority setting partnership Read More »

Public involvement could usefully inform ethical review, but rarely does: what are the implications?

Article/Paper / Deandra Taufik

Year: 2017 Authors: Kristina Staley and Jim Elliott See Resource

Public involvement could usefully inform ethical review, but rarely does: what are the implications? Read More »

Who should I involve in my research and why? Patients, carers or the public?

Article/Paper / Deandra Taufik

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

Article/Paper / Deandra Taufik

Year: 2023 Authors: Giulia Bova et al. See Resource

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 Read More »

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

Article/Paper / Deandra Taufik

Year: 2023 Authors: David Hohenschurz-Schmidt 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 Read More »

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)

Article/Paper / Deandra Taufik

Year: 2020 Authors: Ifeyinwa Osunkwo 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) Read More »

Recognizing patient partner contributions to health research: a systematic review of reported practices

Article/Paper / Hetty Mulhall

Year: 2023 Authors: Grace Fox, Manoj M. Lalu, Tara Sabloff, Stuart G. Nicholls, Maureen Smith, Dawn Stacey, Faris Almoli &

Recognizing patient partner contributions to health research: a systematic review of reported practices Read More »

Personal science in Parkinson’s disease. A patient-led research study.

Article/Paper / Hetty Mulhall

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

Article/Paper / Hetty Mulhall

Year: 2022 Authors: Azhar Farooqi, Karan Jutlla, Raghu Raghavan, Andrew Wilson, Mohammud Shams Uddin, Carol Akroyd, Naina Patel, Pamela Peggy

Developing a toolkit for increasing the participation of black, Asian and minority ethnic communities in health and social care research Read More »

Improving Kidney Disease Research in the Black Community: The Essential Role of Black Voices in the APOLLO Study

Article/Paper / Hetty Mulhall

Year: 2021 Authors: Ana S. Iltis et al. See Resource

Improving Kidney Disease Research in the Black Community: The Essential Role of Black Voices in the APOLLO Study Read More »

“He Who Owns the Data, Owns the Patient,” Black Participants and Clinical Trials

Article/Paper / Hetty Mulhall

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

Article/Paper / Hetty Mulhall

Year: 2020 Authors: Lauri Arnstein, Anne Clare Wadsworth, Beverley Anne Yamamoto, Richard Stephens, Kawaldip Sehmi, Rachel Jones, Arabella Sargent, Thomas

Patient involvement in preparing health research peer-reviewed publications or results summaries: a systematic review and evidence-based recommendations Read More »

Hidden in plain sight? Identifying patient-authored publications

Article/Paper / Hetty Mulhall

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

Article/Paper / Hetty Mulhall

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

Article/Paper / Hetty Mulhall

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

Article/Paper / Hetty Mulhall

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

Article/Paper / vbase

Year: 2023 Authors: Wannheden, C., Riggare, S., Luckhaus, J.L., et al. See Resource

A rocky road but worth the drive: A longitudinal qualitative study of patient innovators and researchers cocreating research Read More »

My 5 top learnings from tracking my Parkinson for over a decade

Article/Paper / vbase

Year: 2022 Authors: Sara Riggare See Resource

My 5 top learnings from tracking my Parkinson for over a decade Read More »