The processes and impact of consumer involvement in health research has itself become an area of research and publication. Links to publication repositories, together with a selection of publications, are included below:

• • INVOLVE in the United Kingdom maintains an Evidence Library focused on public involvement in research;
  • The Patient-Centred Outcomes Research Institute (PCORI) in the United States has a searchable list of publications on consumer engagement in health research;
  • A recent narrative review of literature on the engagement of consumers in health research by Anderst et al. (2020) provides an overview of the benefits, barriers and enablers to consumer engagement in health research;
  • Drawing on a systematic review of literature, Greenhalgh et al. (2019) provide an overview of the theoretical and conceptual frameworks guiding consumer and community involvement in research;
  • Values of co-production – A blog piece written by Professor Christine Jorm, Director of NSW Regional Health Partners, outlining the values of co-production and important factors to consider to ensure it is successful;
  • Consumer and community involvement in health and medical research; An Australian wide audit – The Australian Health Research Alliance (AHRA) authored this report drawing upon survey responses from researchers across Australia as well as an environmental scan of existing literature;
  • Evaluation of Australian training workshops for researchers – This study was a cross-sectional, online survey of researchers, students, clinicians, administrators and members of non-government organisations who attended Consumer and Community Involvement Program training workshops between 2009 and 2012. The aim was to ascertain changes to awareness, attitudes and behaviours related to consumer and community involvement in health and medical research;
  • Rethinking the relationship between science and society – This study aimed to see if there has been a shift in attitudes to Patient and Public Involvement (PPI) and Public Engagement in Science (PES) amongst researchers;
  • Patient engagement in research – This systematic review aimed to answer 4 key questions: What are the best ways to identify patient representatives? How to engage them in designing and conducting research? What are the observed benefits of patient engagement? What are the harms and barriers of patient engagement? 
  • Exploring the impact of patient and public involvement in a cancer research setting – This paper explores the perspectives and experiences of those consumers involved in cancer research;
  • Exploring perceived barriers, drivers, impacts and the need for evaluation of public involvement in health and social care research – This modified Delphi study presents empirical evidence of the opinions voiced by key stakeholders on areas of consensus and conflict in relation to perceived public involvement barriers and drivers, perceived impacts of PI and the need to evaluate PI;   
  • An Australian framework for integrating consumer engagement in health and medical research – This paper involved a literature review followed by semi-structured interviews with experts in consumer engagement and lead medical researchers, group discussions and a consensus workshop with the Partnership Steering Committee facilitated by Health Consumer Alliance;
  • Consumer and Community Engagement Framework, developed by the South Australia Health and Medical Research Institute, was created to encourage other health and medical research institutes to also embrace this approach, thereby increasing meaningful consumer and community engagement in research. It was informed by a review of literature and current practice from across the world;
  • The Canadian Institute of Health Research’s Strategy for Patient-Oriented Research – Patient Engagement Framework is designed to establish key concepts, principles and areas for patient engagement to be adopted by all SPOR partners. 

  • The state of health services partnering with consumers: evidence from an online survey of Australian health services