Literature DB >> 29327211

Twelve Lessons Learned for Effective Research Partnerships Between Patients, Caregivers, Clinicians, Academic Researchers, and Other Stakeholders.

Holly O Witteman1,2,3,4, Selma Chipenda Dansokho5, Heather Colquhoun6, Angela Fagerlin7, Anik M C Giguere8,5,9, Sholom Glouberman10, Lynne Haslett11, Aubri Hoffman12, Noah M Ivers13,14, France Légaré8,15,16, Jean Légaré17, Carrie A Levin18, Karli Lopez19, Victor M Montori20, Jean-Sébastien Renaud8,5, Kerri Sparling21, Dawn Stacey22,23, Robert J Volk24.   

Abstract

Research increasingly means that patients, caregivers, health professionals, other stakeholders, and academic investigators work in partnership. This requires effective collaboration rooted in mutual respect, involvement of all participants, and good communication. Having conducted such partnered research over multiple projects, and having recently completed a project together funded by the Patient-Centered Outcomes Research Institute, we collaboratively developed a list of 12 lessons we have learned about how to ensure effective research partnerships. To foster a culture of mutual respect, hold early in-person meetings, with introductions focused on motivation, offer appropriate orientation for everyone, and maintain awareness of individual and project goals. To actively involve all team members, it is important to ensure sufficient funding for everyone's participation, to ask for and recognize diverse contributions, and to seek the input of quiet members. To facilitate good communication, teams should carefully consider labels, avoid jargon and acronyms, judiciously use homogeneous and heterogeneous subgroups, and keep progress visible. In offering pragmatic, actionable lessons we have learned through our separate and shared experiences, we hope to help foster more patient-centered research via productive and enjoyable research collaborations.

Entities:  

Keywords:  patient engagement; patient-centered outcomes research; stakeholder engagement

Mesh:

Year:  2018        PMID: 29327211      PMCID: PMC5880766          DOI: 10.1007/s11606-017-4269-6

Source DB:  PubMed          Journal:  J Gen Intern Med        ISSN: 0884-8734            Impact factor:   5.128


  26 in total

1.  Patients and professionals as research partners: challenges, practicalities, and benefits.

Authors:  Sarah Hewlett; Maarten de Wit; Pam Richards; Enid Quest; Rod Hughes; Turid Heiberg; John Kirwan
Journal:  Arthritis Rheum       Date:  2006-08-15

Review 2.  Participatory action research.

Authors:  Fran Baum; Colin MacDougall; Danielle Smith
Journal:  J Epidemiol Community Health       Date:  2006-10       Impact factor: 3.710

3.  Building and maintaining trust in a community-based participatory research partnership.

Authors:  Suzanne Christopher; Vanessa Watts; Alma Knows His Gun McCormick; Sara Young
Journal:  Am J Public Health       Date:  2008-06-12       Impact factor: 9.308

Review 4.  Review of community-based research: assessing partnership approaches to improve public health.

Authors:  B A Israel; A J Schulz; E A Parker; A B Becker
Journal:  Annu Rev Public Health       Date:  1998       Impact factor: 21.981

5.  Federal government unveils patient-oriented research strategy.

Authors:  Roger Collier
Journal:  CMAJ       Date:  2011-08-29       Impact factor: 8.262

6.  Building strong research partnerships between public health and researchers: a VA case study.

Authors:  Amanda M Midboe; A Rani Elwy; Janet M Durfee; Allen L Gifford; Vera Yakovchenko; Richard A Martinello; David Ross; Maggie Czarnogorski; Matthew B Goetz; Steven M Asch
Journal:  J Gen Intern Med       Date:  2014-12       Impact factor: 5.128

7.  Stakeholder Perspectives on Creating and Maintaining Trust in Community-Academic Research Partnerships.

Authors:  Leah Frerichs; Mimi Kim; Gaurav Dave; Ann Cheney; Kristen Hassmiller Lich; Jennifer Jones; Tiffany L Young; Crystal W Cene; Deepthi S Varma; Jennifer Schaal; Adina Black; Catherine W Striley; Stefanie Vassar; Greer Sullivan; Linda B Cottler; Arleen Brown; Jessica G Burke; Giselle Corbie-Smith
Journal:  Health Educ Behav       Date:  2016-07-09

Review 8.  A systematic review of stakeholder engagement in comparative effectiveness and patient-centered outcomes research.

Authors:  Thomas W Concannon; Melissa Fuster; Tully Saunders; Kamal Patel; John B Wong; Laurel K Leslie; Joseph Lau
Journal:  J Gen Intern Med       Date:  2014-06-04       Impact factor: 5.128

9.  How to increase value and reduce waste when research priorities are set.

Authors:  Iain Chalmers; Michael B Bracken; Ben Djulbegovic; Silvio Garattini; Jonathan Grant; A Metin Gülmezoglu; David W Howells; John P A Ioannidis; Sandy Oliver
Journal:  Lancet       Date:  2014-01-08       Impact factor: 79.321

10.  Community-based participatory research: lessons learned from the Centers for Children's Environmental Health and Disease Prevention Research.

Authors:  Barbara A Israel; Edith A Parker; Zachary Rowe; Alicia Salvatore; Meredith Minkler; Jesús López; Arlene Butz; Adrian Mosley; Lucretia Coates; George Lambert; Paul A Potito; Barbara Brenner; Maribel Rivera; Harry Romero; Beti Thompson; Gloria Coronado; Sandy Halstead
Journal:  Environ Health Perspect       Date:  2005-10       Impact factor: 9.031

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  23 in total

1.  Engaging with patients on research to inform better care.

Authors:  G Ross Baker; Michael H McGillion; Frank Gavin
Journal:  CMAJ       Date:  2018-11-07       Impact factor: 8.262

2.  Caregiver Needs Assessment in Primary Care: Views of Clinicians, Staff, Patients, and Caregivers.

Authors:  Catherine Riffin; Jennifer L Wolff; Matthew Estill; Sheela Prabhu; Karl A Pillemer
Journal:  J Am Geriatr Soc       Date:  2020-03-13       Impact factor: 5.562

3.  Lessons Learned to Building Stakeholder Engagement during the Initial Stages of Pragmatic Research Development and Implementation.

Authors:  Jennifer Combs; Drew Barzman; Rosalie Hemphill; Alexander Osborn; Michael Sorter; Reine Decker
Journal:  Psychiatr Q       Date:  2020-10-14

4.  Patient and family engagement in Alberta's Strategic Clinical Networks.

Authors:  Mikie Mork; Garry Laxdal; Gloria Wilkinson
Journal:  CMAJ       Date:  2019-12-04       Impact factor: 8.262

5.  Advancing Innovation in Skilled Nursing Facilities through Academic Collaborations.

Authors:  Allison M Gustavson; Rebecca S Boxer; Amy Nordon-Craft; Robin L Marcus; Andrea Daddato; Jennifer E Stevens-Lapsley
Journal:  Phys Ther J Policy Adm Leadersh       Date:  2018-08

6.  Engaging indigenous patient partners in patient-oriented research: lessons from a one-year initiative.

Authors:  Marie-Claude Tremblay; Maude Bradette-Laplante; Danielle Bérubé; Élaine Brière; Nicole Moisan; Daniel Niquay; Maman-Joyce Dogba; France Légaré; Alex McComber; Jonathan McGavock; Holly O Witteman
Journal:  Res Involv Engagem       Date:  2020-07-22

7.  Building Strong Clinician-Researcher Collaborations for Successful Hospice and Palliative Care Research.

Authors:  Susan Lysaght Hurley; Susan DeSanto-Madeya; Christine A Fortney; Seiko Izumi; Veerawat Phongtankuel; Joan G Carpenter
Journal:  J Hosp Palliat Nurs       Date:  2022-02-01       Impact factor: 1.918

8.  "Still learning and evolving in our approaches": patient and stakeholder engagement among Canadian community-based primary health care researchers.

Authors:  Claire Kendall; Michael Fitzgerald; Rachel Seoyeon Kang; Sabrina T Wong; Alan Katz; Martin Fortin; Emilie Dionne; Kerry Kuluski; Mary Ann O'Brien; Jenny Ploeg; Lois Crowe; Clare Liddy
Journal:  Res Involv Engagem       Date:  2018-12-03

9.  Network Engagement in Action: Stakeholder Engagement Activities to Enhance Patient-centeredness of Research.

Authors:  Jennifer M Poger; Victoria Mayer; Obidiugwu Kenrik Duru; Beth Nauman; Heather Holderness; Nate Warren; Carolina Vasquez; Salma Bibi; Laura J Rasmussen-Torvik; Zahra Hosseinian; Lizheng Shi; Jamie Wallace; Crispin N Goytia; Carol R Horowitz; Jennifer L Kraschnewski
Journal:  Med Care       Date:  2020-06       Impact factor: 3.178

10.  Learning From Others: Lessons for Improving Collaborations Between Stakeholders and Researchers.

Authors:  Angela Fagerlin
Journal:  Med Care       Date:  2018-10       Impact factor: 2.983

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