Literature DB >> 27083011

Learning to "Swim" with the Experts: Experiences of Two Patient Co-Investigators for a Project Funded by the Patient-Centered Outcomes Research Institute.

Michele Robbins1, Janice Tufte2, Clarissa Hsu3.   

Abstract

The Patient-Centered Outcomes Research Institute (PCORI), established in 2010, launched a new model of incorporating stakeholder perspectives into health care research. To ensure that PCORI-funded studies address issues important to health care consumers, all projects must fully involve patients and other stakeholders in every step of the research process: from planning and design to implementation and dissemination of results.As members of the first cohort of PCORI-funded researchers, our team was on the forefront of developing new approaches to engaging patients in research. One innovation we pioneered was the creation of a "patient co-investigator" role for two nonscientists who were recruited to be active members of the research team throughout the project. This commentary, based on our experiences, aims to help other research teams to 1) understand how to effectively collaborate with stakeholder team members such as patients; 2) anticipate possible challenges; and 3) offer tools for the orientation, training, and integration of patients into a scientific team. Written from the perspective of two PCORI patient co-investigators, our commentary provides lessons learned and recommendations about incorporating nonscientists into research teams.Specifically, we suggest recruiting people with a record of relevant volunteer experience and commitment; establishing a formal application process that provides candidates with details about expectations and responsibilities; and providing comprehensive orientation with ongoing training, encouragement, and support. We hope the points in this commentary help research teams that are incorporating patient co-investigators move toward a positive and productive experience.

Entities:  

Mesh:

Year:  2016        PMID: 27083011      PMCID: PMC4867832          DOI: 10.7812/TPP/15-162

Source DB:  PubMed          Journal:  Perm J        ISSN: 1552-5767


  6 in total

1.  Patient advisory groups in practice improvement: sample case presentation with a discussion of best practices.

Authors:  Kurt B Angstman; Robert O Bender; Steven M Bruce
Journal:  J Ambul Care Manage       Date:  2009 Oct-Dec

2.  PCORI at 3 years--progress, lessons, and plans.

Authors:  Joseph V Selby; Steven H Lipstein
Journal:  N Engl J Med       Date:  2014-02-13       Impact factor: 91.245

3.  Patient and family engagement: a framework for understanding the elements and developing interventions and policies.

Authors:  Kristin L Carman; Pam Dardess; Maureen Maurer; Shoshanna Sofaer; Karen Adams; Christine Bechtel; Jennifer Sweeney
Journal:  Health Aff (Millwood)       Date:  2013-02       Impact factor: 6.301

4.  Early lessons from four 'aligning forces for quality' communities bolster the case for patient-centered care.

Authors:  Deborah Roseman; Jessica Osborne-Stafsnes; Christine Helwig Amy; Summer Boslaugh; Kellie Slate-Miller
Journal:  Health Aff (Millwood)       Date:  2013-02       Impact factor: 6.301

5.  Improving services for back pain: putting the patient at the centre of interprofessional education.

Authors:  Eloise C J Carr; Louise Worswick; Peter M Wilcock; Charles Campion-Smith; Dries Hettinga
Journal:  Qual Prim Care       Date:  2012

6.  Involving patients in setting priorities for healthcare improvement: a cluster randomized trial.

Authors:  Antoine Boivin; Pascale Lehoux; Réal Lacombe; Jako Burgers; Richard Grol
Journal:  Implement Sci       Date:  2014-02-20       Impact factor: 7.327

  6 in total
  9 in total

1.  Developing a Patient- and Family-Centered Research Agenda for Hospital Medicine: The Improving Hospital Outcomes through Patient Engagement (i-HOPE) Study.

Authors:  James D Harrison; Michelle Archuleta; Esther Avitia; Jim Banta; Joy Benn; Marisha Burden; Vineet Chopra; Rebecca Coker; Shaker Eid; Margaret C Fang; Kathlyn Fletcher; Julie Hagan; Jawali Jaranilla; Monalisa Mullick; Christopher Nyenpan; Lali Silva; Melissa Wurst; Georgiann Ziegler; Luci Leykum
Journal:  J Hosp Med       Date:  2020-06       Impact factor: 2.960

2.  Engaging patients in health research: identifying research priorities through community town halls.

Authors:  Holly Etchegary; Lisa Bishop; Catherine Street; Kris Aubrey-Bassler; Dale Humphries; Lidewij Eva Vat; Brendan Barrett
Journal:  BMC Health Serv Res       Date:  2017-03-11       Impact factor: 2.655

3.  'Adding another spinning plate to an already busy life'. Benefits and risks in patient partner-researcher relationships: a qualitative study of patient partners' experiences in a Canadian health research setting.

Authors:  Jenny Leese; Graham Macdonald; Sheila Kerr; Lianne Gulka; Alison M Hoens; Wendy Lum; Bao Chau Tran; Anne F Townsend; Linda C Li
Journal:  BMJ Open       Date:  2018-08-17       Impact factor: 2.692

4.  Patient involvement in clinical trials: motivation and expectations differ between patients and researchers involved in a trial on urinary tract infections.

Authors:  Imke Schilling; Heike Behrens; Claudia Hugenschmidt; Jennifer Liedtke; Guido Schmiemann; Ansgar Gerhardus
Journal:  Res Involv Engagem       Date:  2019-04-01

5.  Using qualitative Health Research methods to improve patient and public involvement and engagement in research.

Authors:  Danielle E Rolfe; Vivian R Ramsden; Davina Banner; Ian D Graham
Journal:  Res Involv Engagem       Date:  2018-12-13

Review 6.  Patient stakeholder engagement in research: A narrative review to describe foundational principles and best practice activities.

Authors:  James D Harrison; Andrew D Auerbach; Wendy Anderson; Maureen Fagan; Martha Carnie; Catherine Hanson; Jim Banta; Gina Symczak; Edmondo Robinson; Jeffrey Schnipper; Celene Wong; Rachel Weiss
Journal:  Health Expect       Date:  2019-02-13       Impact factor: 3.377

Review 7.  Patient-oriented research competencies in health (PORCH) for researchers, patients, healthcare providers, and decision-makers: results of a scoping review.

Authors:  Noreen Frisch; Pat Atherton; Mary M Doyle-Waters; Martha L P MacLeod; Anastasia Mallidou; Vanessa Sheane; John Ward; Jinelle Woodley
Journal:  Res Involv Engagem       Date:  2020-02-10

8.  Evolution of a research team: the patient partner perspective.

Authors:  Suzanne Madison; Alex D Colon-Moya; Wilfredo Morales-Cosme; Margie Lorenzi; Aracelis Diaz; Bridget Hickson; Kathy Monteiro; Alexander Muniz Ruiz; Addie Perez; Richard Redondo; Dennis Reid; Janet Robles; Marsha Santiago; Opal Thompson; Joyce Wade; Mary White; Graciela Castillo; Cristian Valenzuela
Journal:  Res Involv Engagem       Date:  2022-08-24

9.  Patients' and researchers' experiences with a patient board for a clinical trial on urinary tract infections.

Authors:  Imke Schilling; Heike Behrens; Jutta Bleidorn; Ildikó Gágyor; Claudia Hugenschmidt; Hannah Jilani; Guido Schmiemann; Ansgar Gerhardus
Journal:  Res Involv Engagem       Date:  2019-11-28
  9 in total

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