Sarah E Knowles1,2, Dawn Allen3,4, Ailsa Donnelly3,4, Jackie Flynn3,4, Kay Gallacher3,4, Annmarie Lewis3,4, Grace McCorkle3,4, Manoj Mistry3,4, Pat Walkington3,4, Jess Drinkwater4,5. 1. Centre for Reviews and Dissemination, University of York, York, YO10 5DD, UK. sarah.knowles@york.ac.uk. 2. Patients in the Learning Health System PPI Group, NIHR Collaboration for Leadership in Applied Health Research and Care Greater Manchester University of Manchester, Manchester, UK. sarah.knowles@york.ac.uk. 3. Centre for Reviews and Dissemination, University of York, York, YO10 5DD, UK. 4. Patients in the Learning Health System PPI Group, NIHR Collaboration for Leadership in Applied Health Research and Care Greater Manchester University of Manchester, Manchester, UK. 5. School of Medicine, Leeds Institute of Health Sciences, University of Leeds, LS2 9JT, Leeds, UK.
Abstract
BACKGROUND: Knowledge mobilisation requires the effective elicitation and blending of different types of knowledge or ways of knowing, to produce hybrid knowledge outputs that are valuable to both knowledge producers (researchers) and knowledge users (health care stakeholders). Patients and service users are a neglected user group, and there is a need for transparent reporting and critical review of methods used to co-produce knowledge with patients. This study aimed to explore the potential of participatory codesign methods as a mechanism of supporting knowledge sharing, and to evaluate this from the perspective of both researchers and patients. METHODS: A knowledge mobilisation research project using participatory codesign workshops to explore patient involvement in using health data to improve services. To evaluate involvement in the project, multiple qualitative data sources were collected throughout, including a survey informed by the Generic Learning Outcomes framework, an evaluation focus group, and field notes. Analysis was a collective dialogic reflection on project processes and impacts, including comparing and contrasting the key issues from the researcher and contributor perspectives. RESULTS: Authentic involvement was seen as the result of "space to talk" and "space to change". "Space to talk" refers to creating space for shared dialogue, including space for tension and disagreement, and recognising contributor and researcher expertise as equally valuable to the discussion. 'Space to change' refers to space to adapt in response to contributor feedback. These were partly facilitated by the use of codesign methods which emphasise visual and iterative working, but contributors emphasised that relational openness was more crucial, and that this needed to apply to the study overall (specifically, how contributors were reimbursed as a demonstration of how their input was valued) to build trust, not just to processes within the workshops. CONCLUSIONS: Specific methods used within involvement are only one component of effective involvement practice. The relationship between researcher and contributors, and particularly researcher willingness to change their approach in response to feedback, were considered most important by contributors. Productive tension was emphasised as a key mechanism in leading to genuinely hybrid outputs that combined contributor insight and experience with academic knowledge and understanding.
BACKGROUND: Knowledge mobilisation requires the effective elicitation and blending of different types of knowledge or ways of knowing, to produce hybrid knowledge outputs that are valuable to both knowledge producers (researchers) and knowledge users (health care stakeholders). Patients and service users are a neglected user group, and there is a need for transparent reporting and critical review of methods used to co-produce knowledge with patients. This study aimed to explore the potential of participatory codesign methods as a mechanism of supporting knowledge sharing, and to evaluate this from the perspective of both researchers and patients. METHODS: A knowledge mobilisation research project using participatory codesign workshops to explore patient involvement in using health data to improve services. To evaluate involvement in the project, multiple qualitative data sources were collected throughout, including a survey informed by the Generic Learning Outcomes framework, an evaluation focus group, and field notes. Analysis was a collective dialogic reflection on project processes and impacts, including comparing and contrasting the key issues from the researcher and contributor perspectives. RESULTS: Authentic involvement was seen as the result of "space to talk" and "space to change". "Space to talk" refers to creating space for shared dialogue, including space for tension and disagreement, and recognising contributor and researcher expertise as equally valuable to the discussion. 'Space to change' refers to space to adapt in response to contributor feedback. These were partly facilitated by the use of codesign methods which emphasise visual and iterative working, but contributors emphasised that relational openness was more crucial, and that this needed to apply to the study overall (specifically, how contributors were reimbursed as a demonstration of how their input was valued) to build trust, not just to processes within the workshops. CONCLUSIONS: Specific methods used within involvement are only one component of effective involvement practice. The relationship between researcher and contributors, and particularly researcher willingness to change their approach in response to feedback, were considered most important by contributors. Productive tension was emphasised as a key mechanism in leading to genuinely hybrid outputs that combined contributor insight and experience with academic knowledge and understanding.
Authors: Tineke A Abma; Carina A C M Pittens; Merel Visse; Janneke E Elberse; Jacqueline E W Broerse Journal: Health Expect Date: 2014-05-30 Impact factor: 3.377
Authors: Sarah Knowles; Rebecca Hays; Hugo Senra; Peter Bower; Louise Locock; Jo Protheroe; Caroline Sanders; Gavin Daker-White Journal: Health Expect Date: 2017-12-20 Impact factor: 3.377
Authors: Edel Tierney; Rachel McEvoy; Mary O'Reilly-de Brún; Tomas de Brún; Ekaterina Okonkwo; Michelle Rooney; Chris Dowrick; Anne Rogers; Anne MacFarlane Journal: Health Expect Date: 2014-07-24 Impact factor: 3.377