TY - JOUR
T1 - Principles and strategies for involving patients in research in chronic kidney disease
T2 - report from national workshops
AU - Gutman, Talia
AU - Tong, Allison
AU - Howell, Martin
AU - Dansie, Kathryn
AU - Hawley, Carmel M.
AU - Craig, Jonathan C.
AU - Jesudason, Shilpanjali
AU - Chapman, Jeremy R.
AU - Johnson, David W.
AU - Murphy, Lisa
AU - Reidlinger, Donna
AU - Crowe, Sally
AU - Duncanson, Emily
AU - Muthuramalingam, Shyamsundar
AU - Scholes-Robertson, Nicole
AU - Williamson, Amber
AU - McDonald, Stephen
AU - Better Evidence and Translation in Chronic Kidney Disease (BEAT-CKD) Workshop Investigators
AU - Cho, Yeoungjee
AU - Conley, Margie
AU - Clayton, Phil
AU - Forbes, Josephine
AU - Henson, Angela
AU - Isbel, Nikky
AU - James, Laura
AU - Ju, Angela
AU - Lopez-Vargas, Pamela
AU - Mudge, David
AU - Shanahan, Lisa
AU - Sypek, Matthew
AU - van Zwieten, Anita
AU - Viecelli, Andrea
AU - Beech-Allen, Jane
AU - Chandra, Mukesh
AU - Coolican, Helen
AU - Cornell, Judith
AU - Cornish, Clive
AU - Cullen, Vanessa
AU - Ellis, David
AU - Ellis, Jullianne
AU - Evans, Esparanzo
AU - Fisher, Jason
AU - Gilligan, Paul
AU - Hesford, Sandra
AU - Hesford, Tevor
AU - Hoogesteger, Therese
AU - Jones, Colin
AU - Lin, Bruce
AU - McCready, Phillip
AU - Mead, Sherry
AU - Michael, Harry
AU - Michael, Rhonda
AU - Noble, Phillip
AU - Noble, Susan
AU - Pennacchio, Michael
AU - Ramshaw, Peter
AU - Richardson, Lisa
AU - Senol, Meral
AU - Senol, Tugba
AU - Simpson, Tim
AU - Aidinis, Sydney
AU - Bolton, Ainslie
AU - Bondaruk, Alla
AU - Bondaruk, Lydia
AU - Brearton, Beryl
AU - Cardelli, Paolo
AU - Clark, Michael
AU - Dennis, John
AU - Ellery, Lois
AU - Fazulla, Neville
AU - Fulwood, Rosalind
AU - Geesing, Michael
AU - Griffith, John
AU - Hall, Lynda
AU - Hall, Rob
AU - Harrison, Chris
AU - Harward, Greg
AU - Hockley, Bronwyn
AU - Ireland, Patricia
AU - Karidis, Marina
AU - Le Leu, Richard
AU - Ludlow, Marie
AU - Lugg, Lindsay
AU - Majarian, George
AU - Marsden, Fabian
AU - Mayer, Tom
AU - Mayer Jr., Tom
AU - Amalraj, Amritha
AU - Newton, Debbie
AU - Newton, Garrie
AU - Paget, Tamara
AU - Riches, Wayne
AU - Roberts, David
AU - Roberts, Joy
AU - Sterk, Bronte
AU - Stopp, Barbara
AU - Taylor, Andrew
AU - Taylor, Maureen
AU - Taylor, Peter
AU - Taylor, Polly
AU - Tejada, Ann
AU - Turner, Sandra
AU - Voss, Diana
AU - Watt, Amber
AU - Waxman, Patricia
AU - Wynne, Trevor
AU - Ames, Carlyn
AU - Arkinstall, Neville
AU - Arkinstall, Gwen
AU - Best, Jenny
AU - Biedermann, Jill
AU - Biedermann, Andrew
AU - Brown, Colin
AU - Cameron, Anne
AU - Carswell, Phillip
AU - Chambers, Martin
AU - Chambers, Loraine
AU - Cowper, Frances
AU - Dooley, Jenevieve
AU - Dunning, Tony
AU - Dunning, Sue Ann
AU - Dwyer, Kerry
AU - Felschow, Donna
AU - Goan, Bernard
AU - Greenup, Kate
AU - Hindom, Laurie
AU - Hindom, Linda
AU - Hoy, Wendy
AU - Jennings, Gaye
AU - Kudlak, Sofia
AU - Luchterhand, Mark
AU - Luchterhand, Amy
AU - Mewburn, Irene
AU - Morgan, Russell
AU - Nester, Anthony
AU - Oliver, Veronica
AU - Pedersen, Carl
AU - Sandford, Chris
AU - Smith, Lloyd
AU - Viecelli, Andrea
AU - Walker, Julie
AU - Walker, Ralph
AU - White, Richard
PY - 2020/9/1
Y1 - 2020/9/1
N2 - Background. There is widespread recognition that research will be more impactful if it arises from partnerships between patients and researchers, but evidence on best practice for achieving this remains limited. Methods. We convened workshops in three Australian cities involving 105 patients/caregivers and 43 clinicians/researchers. In facilitated breakout groups, participants discussed principles and strategies for effective patient involvement in chronic kidney disease research. Transcripts were analysed thematically.Results. Five major themes emerged. 'Respecting consumer expertise and commitment' involved valuing unique and diverse experiential knowledge, clarifying expectations and responsibilities, equipping for meaningful involvement and keeping patients 'in the loop'. 'Attuning to individual context' required a preference-based multipronged approach to engagement, reducing the burden of involvement and being sensitive to the patient journey. 'Harnessing existing relationships and infrastructure' meant partnering with trusted clinicians, increasing research exposure in clinical settings, mentoring patient to patient and extending reach through established networks. 'Developing a coordinated approach' enabled power in the collective and united voice, a systematic approach for equitable inclusion and streamlining access to opportunities and trustworthy information. 'Fostering a patient-centred culture' encompassed building a community, facilitating knowledge exchange and translation, empowering health ownership, providing an opportunity to give back and cultivating trust through transparency. Conclusions. Partnering with patients in research requires respect and recognition of their unique, diverse and complementary experiential expertise. Establishing a supportive, respectful research culture, responding to their individual context, coordinating existing infrastructure and centralizing the flow of information may facilitate patient involvement as active partners in research.
AB - Background. There is widespread recognition that research will be more impactful if it arises from partnerships between patients and researchers, but evidence on best practice for achieving this remains limited. Methods. We convened workshops in three Australian cities involving 105 patients/caregivers and 43 clinicians/researchers. In facilitated breakout groups, participants discussed principles and strategies for effective patient involvement in chronic kidney disease research. Transcripts were analysed thematically.Results. Five major themes emerged. 'Respecting consumer expertise and commitment' involved valuing unique and diverse experiential knowledge, clarifying expectations and responsibilities, equipping for meaningful involvement and keeping patients 'in the loop'. 'Attuning to individual context' required a preference-based multipronged approach to engagement, reducing the burden of involvement and being sensitive to the patient journey. 'Harnessing existing relationships and infrastructure' meant partnering with trusted clinicians, increasing research exposure in clinical settings, mentoring patient to patient and extending reach through established networks. 'Developing a coordinated approach' enabled power in the collective and united voice, a systematic approach for equitable inclusion and streamlining access to opportunities and trustworthy information. 'Fostering a patient-centred culture' encompassed building a community, facilitating knowledge exchange and translation, empowering health ownership, providing an opportunity to give back and cultivating trust through transparency. Conclusions. Partnering with patients in research requires respect and recognition of their unique, diverse and complementary experiential expertise. Establishing a supportive, respectful research culture, responding to their individual context, coordinating existing infrastructure and centralizing the flow of information may facilitate patient involvement as active partners in research.
KW - Consumer engagement
KW - Consumer involvement
KW - Patient engagement
KW - Patient involvement
KW - Patient research partner
UR - http://www.scopus.com/inward/record.url?scp=85088965031&partnerID=8YFLogxK
U2 - 10.1093/ndt/gfz076
DO - 10.1093/ndt/gfz076
M3 - Article
C2 - 31093667
AN - SCOPUS:85088965031
SN - 0931-0509
VL - 35
SP - 1585
EP - 1594
JO - Nephrology Dialysis Transplantation
JF - Nephrology Dialysis Transplantation
IS - 9
ER -