Patient and public involvement in research: Enabling meaningful contributions

Abstract

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Involving consumers with palliative care needs and their families in research: A case study

“…There is substantial literature outlining the value of integrating the consumer perspective into research design and implementation centering around impacts on quality (Brett et al, 2014;Daveson et al, 2015;Scholz et al, 2019;Woolf, Zimmerman, Haley, & Krist, 2016), appropriateness (Brett et al, 2014;Canadian Institutes of Health Research, 2011;Cancer Australia & Cancer Voices Australia, 2011;Scholz et al, 2019), relevance (Daveson et al, 2015;National Health & Medical Research Council, 2016;Scholz et al, 2019;Woolf et al, 2016), impact (Canadian Institutes of Health Research, 2011;National Health & Medical Research Council, 2016;Scholz et al, 2019;Woolf et al, 2016), improved outcomes and experiences for patients and families (Cancer Australia & Cancer Voices Australia, 2011;National Health & Medical Research Council, 2016), ethical respect for vulnerable populations (Woolf et al, 2016) and developing a research active nation (Daveson et al, 2015;National Health & Medical Research Council, 2016). However, barriers to such participation have also been noted, including a lack of clarity about the purpose and role of a consumer representative (Ball et al, 2019;Nathan, Johnston, & Braithwaite, 2011;National Health & Medical Research Council, 2016), inadequate preparation for consumer representatives (Ball et al, 2019;Consumer Health Forum of Australia, 2015;National Health & Medical Research Council, 2016;Woolf et al, 2016), tokenism (Ball et al, 2019;National Health & Medical Research Council, 2016), and tension in relation to the balance between lay and clinical perspectives…”

“…However, barriers to such participation have also been noted, including a lack of clarity about the purpose and role of a consumer representative (Ball et al, 2019;Nathan, Johnston, & Braithwaite, 2011;National Health & Medical Research Council, 2016), inadequate preparation for consumer representatives (Ball et al, 2019;Consumer Health Forum of Australia, 2015;National Health & Medical Research Council, 2016;Woolf et al, 2016), tokenism (Ball et al, 2019;National Health & Medical Research Council, 2016), and tension in relation to the balance between lay and clinical perspectives (Ball et al, 2019;Beckett, Farr, Kothari, Wye, & le May, 2018;Martin & Finn, 2011;National Health & Medical Research Council, 2016;Scholz et al, 2019). Planning participation and role definition carefully and in view of each unique study's requirements is essential to enable such barriers to be overcome (Ball et al, 2019;Cancer Australia & Cancer Voices Australia, 2011;National Health & Medical Research Council, 2016). This case study addressed such concerns through: collaborating to co-design a research protocol with clarity about the purpose for consumer engagement focusing on participant experience within the research, rather than research methodology per se; carefully considering how to value the consumer voice; ensuring adequate preparation for meaningful consumer engagement through sending draft documentation for review prior to meetings; ensuring openness to feedback even when a difference between lay and clinical perspectives was noted and felt challenging.…”

“…Significant progress in relation to meaningful engagement with consumer representatives within research design, conduct and reporting has occurred over the past decade (Ball et al, 2019;Woolf et al, 2016), with some of this progress credited to the work led by the Patient-Centered Outcomes Research Institute (PCORI) (Frank, Basch, & Selby, 2014;Selby, Forsythe, & Sox, 2015). PCORI is a non-governmental organisation, established in 2010 in the United States, with a noted mandate to 'improve the quality and relevance of evidence available to help patients, caregivers, clinicians, employers, insurers, and policy makers make better-informed health decisions' (Patient-Centered Outcomes Research Institute, 2017) and they do so in a variety of ways, one being to ensure engagement of patients and family members across all stages of the research cycle.…”

“…The United Kingdom has led significant work in this area, with additional policy and study work evident from Canada, the United States and more recently, Australia (Brett et al, 2014). However, achieving authentic consumer ('patient, carer and/or family') engagement continues to be challenging in many contexts (Ball, Harshfield, Carpenter, Bertscher, & Marjanovic, 2019;Brett et al, 2014;Daveson et al, 2015;Hubbard, Kidd, Donaghy, McDonald, & Kearney, 2007;Oliver, Kothari, & Mays, 2019). A recent review found that integrating consumers' perspectives into projects designed to reform the Australian health system and/or care delivery has evolved significantly over the past 20 years in relation to their work in developing, implementing and evaluating such work (Consumer Health Forum of Australia, 2015).…”

The Participatory Zeitgeist in Health Care: It is Time for a Science of Participation

“…The call for a science of participation is coupled with the need for systematic examination and observation of impact and outcome. There has been a growth in literature outlining an expectation that we should see evidence of impact from coproduction [ 22 - 26 ], and there is an expectation that participation from patients, carers/families, and service users increases patient-centered outcomes, improves professional morale, and increases health and well-being; however, the measurement of this has been inconsistent and almost absent. To date, one cluster randomized controlled trial has been conducted to test the assumption that a participatory, co-design, quality improvement method may improve individual, psychosocial, recovery outcomes: the CORE Study (2013-2017) [ 23 ].…”