Healthcare consumer (patients, carers, and the public) involvement in research is a growing movement across the world, including in evidence synthesis. Cochrane is the world’s largest producer of systematic reviews and has a long history of involvement, though not consistently or throughout the evidence production cycle.
This webinar, presented by: Richard Morley, Maureen Smith, Karen Morley, Nick Meader and Janet Jull:
(i) explains the rationale for consumer involvement in evidence synthesis
ii) describes the framework for involvement from Pollock et al “Development of the ACTIVE framework to describe stakeholder involvement in systematic reviews” (2019) https://doi.org/10.1177/1355819619841647,
(iii) hears from consumers and researchers who have collaborated in the production of systematic reviews and
(iv) shares a range of practical resources for consumers and researchers.
Follow Cochrane Consumers on Twitter for more on: @Cochraneconsumr.
Richard is Cochrane’s Consumer Engagement Officer. He supports the engagement and involvement of healthcare consumers (patients, carers, and the public) in Cochrane’s research and governance, including working with a growing network of 1750 volunteers across the world. He works with Cochrane authors and Groups and a range of partnerships that support this engagement, including the new International Network for Patient and Public Involvement in Research, of which he was a founder member. Richard has extensive experience of public engagement and partnership working in the voluntary, public and higher education sectors. He has worked as an adviser for the James Lind Alliance, supporting research priority setting at the University of York’s Department of Health Science on patient involvement where he is a Visiting Fellow.
Maureen Smith has a long history of collaboration with the healthcare system subsequent to a rare disease diagnosis in childhood. She is the chair of Cochrane’s Consumer Executive and is involved in several Cochrane projects and advisory committees. Maureen is a member of the COMET Initiative’s People and Patient Participation, Involvement and Engagement (PoPPIE) Working Group. In Canada, she is an enthusiastic, committed patient partner on several patient-oriented research projects and is the co-vice-chair of Ontario’s SPOR Support Unit’s Patient Partner Working Group. For the past 12 years, Maureen has been a member of the Board of Directors of the Canadian Organization for Rare Disorders (CORD). She continues to serve as a patient member on the Ontario Committee to Evaluate Drugs since 2014 and the Ontario Health Technology Assessment Committee for the past four years.
Nick Meader joined Centre for Reviews and Dissemination in 2011 after several years developing mental health guidelines for the National Institute for Health and Care Excellence (NICE). He is currently a Senior Editor with the Cochrane Common Mental Disorders review group. He is also a member of the York Technology Assessment Review group who provide independent assessments to inform policy decisions for NICE and other policy makers.
Dr. Janet Jull is an Assistant Professor at Queen’s University in Kingston, Ontario, Canada. Janet develops and evaluates shared decision making tools and approaches to support client-centred care in partnerships with First Nations, Inuit and Métis communities, with a particular focus on cancer and health care systems. Janet also investigates how research is conducted in partnerships; specifically when those who are engaged in the production of research, partner with those who contend with the real-world needs and constraints of health systems and their users. Janet’s Twitter account is @jjull3
Karen Morley is a retired secondary school teacher, a Cochrane Consumer and a volunteer with the Cochrane Common Mental Disorders Review Group. She has contributed to the creation of Cochrane Evidence Essentials, to the CCMD Voice of Experience College, is an occasional blogger and has written consumer peer reviews. She has experienced Obsessive Compulsive Disorder (contamination).
