Literature DB >> 27044956

Authentic Engagement Of Patients And Communities Can Transform Research, Practice, And Policy.

Steven H Woolf1, Emily Zimmerman2, Amber Haley3, Alex H Krist4.   

Abstract

The engagement of patients and the public is increasingly important in the design and conduct of research. Some researchers still cling to the outdated notion that laypeople cannot contribute meaningfully to science; for some, "community engagement" is another term for recruiting patients for trials. Authentic engagement encompasses far more, involving stakeholders as full partners in all phases of research, as research funders increasingly require. Such engagement, although challenging, can enhance the quality and impact of studies on many levels, from ensuring that data are relevant to users' needs to elevating the moral plane of research by showing respect to patients and vulnerable populations. We share examples from our work, including the engagement of patients in a study of cancer screening decisions and the engagement of inner-city residents in addressing social determinants of health. These engagement principles are of growing relevance to health systems and policy makers responsible for population health. Project HOPE—The People-to-People Health Foundation, Inc.

Entities:  

Keywords:  Community based participatory research; Patient centered outcomes research; Patient engagement; Population health; Stakeholder engagement

Mesh:

Year:  2016        PMID: 27044956      PMCID: PMC4868544          DOI: 10.1377/hlthaff.2015.1512

Source DB:  PubMed          Journal:  Health Aff (Millwood)        ISSN: 0278-2715            Impact factor:   6.301


  7 in total

1.  Stakeholder-Driven Comparative Effectiveness Research: An Update From PCORI.

Authors:  Joseph V Selby; Laura Forsythe; Harold C Sox
Journal:  JAMA       Date:  2015-12-01       Impact factor: 56.272

2.  Photovoice: concept, methodology, and use for participatory needs assessment.

Authors:  C Wang; M A Burris
Journal:  Health Educ Behav       Date:  1997-06

3.  Integrating public health and community development to tackle neighborhood distress and promote well-being.

Authors:  Manuel Pastor; Rachel Morello-Frosch
Journal:  Health Aff (Millwood)       Date:  2014-11       Impact factor: 6.301

Review 4.  Translating evidence into population health improvement: strategies and barriers.

Authors:  Steven H Woolf; Jason Q Purnell; Sarah M Simon; Emily B Zimmerman; Gabriela J Camberos; Amber Haley; Robert P Fields
Journal:  Annu Rev Public Health       Date:  2015-01-12       Impact factor: 21.981

5.  The PCORI perspective on patient-centered outcomes research.

Authors:  Lori Frank; Ethan Basch; Joe V Selby
Journal:  JAMA       Date:  2014-10-15       Impact factor: 56.272

6.  Finding the role of health care in population health.

Authors:  Emma M Eggleston; Jonathan A Finkelstein
Journal:  JAMA       Date:  2014-02-26       Impact factor: 56.272

7.  Consumers' Interest In Provider Ratings Grows, And Improved Report Cards And Other Steps Could Accelerate Their Use.

Authors:  Steven D Findlay
Journal:  Health Aff (Millwood)       Date:  2016-04       Impact factor: 6.301

  7 in total
  48 in total

1.  Development of a veteran engagement toolkit for researchers.

Authors:  Nicole A Brys; Jeff Whittle; Nasia Safdar
Journal:  J Comp Eff Res       Date:  2018-06-01       Impact factor: 1.744

2.  Engaging older patients with cancer and their caregivers as partners in cancer research.

Authors:  Nikesha J Gilmore; Beverly Canin; Mary Whitehead; Margaret Sedenquist; Lorraine Griggs; Lynn Finch; Valerie Grossman; Valerie Targia; Megan Wells; Charles Kamen; Marie Flannery; Allison Magnuson; Sandy Plumb; Spencer Obrecht; Lisa M Lowenstein; Gilberto Lopez; Jainy Anderson; Jeffrey Berenberg; Victor Vogel; James Bearden; William Dale; Supriya G Mohile
Journal:  Cancer       Date:  2019-08-16       Impact factor: 6.860

3.  Necessary But Not Sufficient: Why Health Care Alone Cannot Improve Population Health and Reduce Health Inequities.

Authors:  Steven H Woolf
Journal:  Ann Fam Med       Date:  2019-05       Impact factor: 5.166

4.  Strengthening stakeholder-engaged research and research on stakeholder engagement.

Authors:  Kristin N Ray; Elizabeth Miller
Journal:  J Comp Eff Res       Date:  2017-06-16       Impact factor: 1.744

5.  Engaging African American Veterans with Health Care Access Challenges in a Community Partnered Care Coordination Initiative: A Qualitative Needs Assessment.

Authors:  Adriana Izquierdo; Michael Ong; Felica Jones; Loretta Jones; David Ganz; Lisa Rubenstein
Journal:  Ethn Dis       Date:  2018-09-06       Impact factor: 1.847

6.  The Prevention of Lower Urinary Tract Symptoms (PLUS) in girls and women: Developing a conceptual framework for a prevention research agenda.

Authors:  Sonya S Brady; Tamara G Bavendam; Amanda Berry; Cynthia S Fok; Sheila Gahagan; Patricia S Goode; Cecilia T Hardacker; Jeni Hebert-Beirne; Cora E Lewis; Jessica B Lewis; Lisa Kane Low; Jerry L Lowder; Mary H Palmer; Jean F Wyman; Emily S Lukacz
Journal:  Neurourol Urodyn       Date:  2018-08-22       Impact factor: 2.696

7.  Attending to the Interrelatedness of the Functions of Consent.

Authors:  Benjamin S Wilfond; Stephanie A Kraft
Journal:  Am J Bioeth       Date:  2017-12       Impact factor: 11.229

8.  FACETS: using open data to measure community social determinants of health.

Authors:  Michael N Cantor; Rajan Chandras; Claudia Pulgarin
Journal:  J Am Med Inform Assoc       Date:  2018-04-01       Impact factor: 4.497

9.  Harnessing Information Technology to Inform Patients Facing Routine Decisions: Cancer Screening as a Test Case.

Authors:  Alex H Krist; Steven H Woolf; Camille Hochheimer; Roy T Sabo; Paulette Kashiri; Resa M Jones; Jennifer Elston Lafata; Rebecca S Etz; Shin-Ping Tu
Journal:  Ann Fam Med       Date:  2017-05       Impact factor: 5.166

10.  School Nurses' Perspectives on Components of Asthma Programs to Address Pediatric Disparities.

Authors:  Robin S Everhart; Rosalie Corona; Suzanne E Mazzeo; Katherine W Dempster; Michael S Schechter
Journal:  J Pediatr Psychol       Date:  2020-09-01
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