Literature DB >> 30565151

Practical Guidance for Involving Stakeholders in Health Research.

Thomas W Concannon1,2, Sean Grant3, Vivian Welch4, Jennifer Petkovic4, Joseph Selby5, Sally Crowe6, Anneliese Synnot7,8, Regina Greer-Smith9, Evan Mayo-Wilson10, Ellen Tambor11, Peter Tugwell12.   

Abstract

Stakeholder engagement is increasingly common in health research, with protocols for engaging multiple stakeholder groups becoming normative in patient-centered outcomes research. Previous work has focused on identifying relevant stakeholder groups with whom to work and on working with stakeholders in evidence implementation. This paper draws on the expertise of a team from four countries-Canada, Australia, the UK, and the USA-to provide researchers with practical guidance for carrying out multi-stakeholder-engaged projects: we present a list of questions to assist in selecting appropriate roles and modes of engagement; we introduce a matrix to help summarize engagement activities; and we provide a list of online resources. This guidance, matrix, and list of resources can assist researchers to consider more systematically which stakeholder groups to involve, in what study roles, and by what modes of engagement. By documenting how stakeholders are paired up with specific roles, the matrix also provides a potential structure for evaluating the impact of stakeholder engagement.

Entities:  

Keywords:  international health; patient engagement; patient-centered outcomes research; research design; stakeholder engagement

Year:  2018        PMID: 30565151      PMCID: PMC6420667          DOI: 10.1007/s11606-018-4738-6

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


  23 in total

1.  Stakeholder participation in comparative effectiveness research: defining a framework for effective engagement.

Authors:  Patricia A Deverka; Danielle C Lavallee; Priyanka J Desai; Laura C Esmail; Scott D Ramsey; David L Veenstra; Sean R Tunis
Journal:  J Comp Eff Res       Date:  2012-03       Impact factor: 1.744

2.  Patient and Caregiver Priorities for Outcomes in Hemodialysis: An International Nominal Group Technique Study.

Authors:  Rachel Urquhart-Secord; Jonathan C Craig; Brenda Hemmelgarn; Helen Tam-Tham; Braden Manns; Martin Howell; Kevan R Polkinghorne; Peter G Kerr; David C Harris; Stephanie Thompson; Kara Schick-Makaroff; David C Wheeler; Wim van Biesen; Wolfgang C Winkelmayer; David W Johnson; Kirsten Howard; Nicole Evangelidis; Allison Tong
Journal:  Am J Kidney Dis       Date:  2016-03-08       Impact factor: 8.860

3.  Health researcher views on comparative effectiveness research and research engagement.

Authors:  Laura P Forsythe; Lori B Frank; Thomas A Workman; Amanda Borsky; Tandrea Hilliard; Daniel Harwell; Lauren Fayish
Journal:  J Comp Eff Res       Date:  2017-02-08       Impact factor: 1.744

Review 4.  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

5.  Conceptual and practical foundations of patient engagement in research at the patient-centered outcomes research institute.

Authors:  Lori Frank; Laura Forsythe; Lauren Ellis; Suzanne Schrandt; Sue Sheridan; Jason Gerson; Kristen Konopka; Sarah Daugherty
Journal:  Qual Life Res       Date:  2015-01-06       Impact factor: 4.147

Review 6.  Patient engagement in research: a systematic review.

Authors:  Juan Pablo Domecq; Gabriela Prutsky; Tarig Elraiyah; Zhen Wang; Mohammed Nabhan; Nathan Shippee; Juan Pablo Brito; Kasey Boehmer; Rim Hasan; Belal Firwana; Patricia Erwin; David Eton; Jeff Sloan; Victor Montori; Noor Asi; Abd Moain Abu Dabrh; Mohammad Hassan Murad
Journal:  BMC Health Serv Res       Date:  2014-02-26       Impact factor: 2.655

7.  Patient and Stakeholder Engagement in the PCORI Pilot Projects: Description and Lessons Learned.

Authors:  Laura P Forsythe; Lauren E Ellis; Lauren Edmundson; Raj Sabharwal; Alison Rein; Kristen Konopka; Lori Frank
Journal:  J Gen Intern Med       Date:  2015-07-10       Impact factor: 5.128

8.  Successful Stepwise Development of Patient Research Partnership: 14 Years' Experience of Actions and Consequences in Outcome Measures in Rheumatology (OMERACT).

Authors:  Maarten de Wit; John R Kirwan; Peter Tugwell; Dorcas Beaton; Maarten Boers; Peter Brooks; Sarah Collins; Philip G Conaghan; Maria-Antonietta D'Agostino; Cathie Hofstetter; Rod Hughes; Amye Leong; Ann Lyddiatt; Lyn March; James May; Pamela Montie; Pamela Richards; Lee S Simon; Jasvinder A Singh; Vibeke Strand; Marieke Voshaar; Clifton O Bingham; Laure Gossec
Journal:  Patient       Date:  2017-04       Impact factor: 3.883

9.  Tailoring and field-testing the use of a knowledge translation peer support shared decision making strategy with First Nations, Inuit and Métis people making decisions about their cancer care: a study protocol.

Authors:  Janet Jull; Maegan Mazereeuw; Amanada Sheppard; Alethea Kewayosh; Richard Steiner; Ian D Graham
Journal:  Res Involv Engagem       Date:  2018-03-01

Review 10.  Values associated with public involvement in health and social care research: a narrative review.

Authors:  Felix Gradinger; Nicky Britten; Katrina Wyatt; Katherine Froggatt; Andy Gibson; Ann Jacoby; Fiona Lobban; Debbie Mayes; Dee Snape; Tim Rawcliffe; Jennie Popay
Journal:  Health Expect       Date:  2013-12-10       Impact factor: 3.377

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  25 in total

1.  Engaging Stakeholders in the Design and Conduct of Embedded Pragmatic Clinical Trials for Alzheimer's Disease and Alzheimer's Disease-Related Dementias.

Authors:  Jill Harrison; Katie Maslow; Ellen Tambor; Louise Phillips; Lori Frank; Laurie Herndon; Gary Epstein-Lubow
Journal:  J Am Geriatr Soc       Date:  2020-07       Impact factor: 5.562

Review 2.  Clinical trial considerations in sickle cell disease: patient-reported outcomes, data elements, and the stakeholder engagement framework.

Authors:  Sherif M Badawy
Journal:  Hematology Am Soc Hematol Educ Program       Date:  2021-12-10

3.  Evaluating the Impact of Stakeholder Engagement in a School-Based Type 1 Diabetes Study.

Authors:  Christine A March; Traci M Kazmerski; Christine Moon; Ingrid M Libman; Elizabeth Miller
Journal:  Diabetes Spectr       Date:  2021-08-03

4.  A multicomponent family support intervention in intensive care units: study protocol for a multicenter cluster-randomized trial (FICUS Trial).

Authors:  Rahel Naef; Miodrag Filipovic; Marie-Madlen Jeitziner; Stefanie von Felten; Judith Safford; Marco Riguzzi; Michael Rufer
Journal:  Trials       Date:  2022-06-27       Impact factor: 2.728

5.  Road Toward a New Model of Care for Idiopathic Pulmonary Fibrosis in the Lazio Region.

Authors:  Rossella Di Bidino; Paola Rogliani; Alfredo Sebastiani; Alberto Ricci; Francesco Varone; Giacomo Sgalla; Bruno Iovene; Teresa Bruni; Maria Chiara Flore; Michela D'Ascanio; Francesco Cavalli; Daniela Savi; Loreta Di Michele; Americo Cicchetti; Luca Richeldi
Journal:  Front Med (Lausanne)       Date:  2022-06-09

6.  Confronting Racism in All Forms of Pain Research: A Shared Commitment for Engagement, Diversity, and Dissemination.

Authors:  Anna M Hood; Staja Q Booker; Calia A Morais; Burel R Goodin; Janelle E Letzen; Lisa C Campbell; Ericka N Merriwether; Edwin N Aroke; Claudia M Campbell; Vani A Mathur; Mary R Janevic
Journal:  J Pain       Date:  2022-02-26       Impact factor: 5.383

7.  Engaging Patients and Other Non-Researchers in Health Research: Defining Research Engagement.

Authors:  Lori Frank; Sally C Morton; Jeanne-Marie Guise; Janet Jull; Thomas W Concannon; Peter Tugwell
Journal:  J Gen Intern Med       Date:  2019-11-11       Impact factor: 5.128

8.  Partnering to Increase Colorectal Cancer Screening: Perspectives of Community Advisory Board Members.

Authors:  Susan M Rawl; Sandra Bailey; Beatrice Cork; Matthew Fields; Thomas Griffin; Laura Haunert; Judy Kline; Connie Krier; Juan Lagunes; Ruth L Lambert; Caeli Malloy; Jack Quick; Rivienne Shedd-Steele; Sylvia Strom; Lisa Carter-Harris
Journal:  West J Nurs Res       Date:  2021-02-15       Impact factor: 1.967

9.  Stakeholder Engagement in Pragmatic Clinical Trials: Emphasizing Relationships to Improve Pain Management Delivery and Outcomes.

Authors:  Lori A Bastian; Steven P Cohen; Lily Katsovich; William C Becker; Bradley R Brummett; Diana J Burgess; Andrea E Crunkhorn; Lauren M Denneson; Joseph W Frank; Christine Goertz; Brian Ilfeld; Kathryn E Kanzler; Akshaya Krishnaswamy; Kathryn LaChappelle; Steve Martino; Kristin Mattocks; Cindy A McGeary; Thomas E Reznik; Daniel I Rhon; Stacie A Salsbury; Karen H Seal; Alicia M Semiatin; Marlena H Shin; Corey B Simon; Deydre S Teyhen; Kara Zamora; Robert D Kerns
Journal:  Pain Med       Date:  2020-12-12       Impact factor: 3.637

10.  Facilitating stakeholder engagement in early stage translational research.

Authors:  Amy M LeClair; Virginia Kotzias; Jonathan Garlick; Allison M Cole; Simona C Kwon; Alexandra Lightfoot; Thomas W Concannon
Journal:  PLoS One       Date:  2020-07-02       Impact factor: 3.240

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