Literature DB >> 27206519

Priorities for Patient-Centered Outcomes Research: The Views of Minority and Underserved Communities.

Susan Dorr Goold1, C Daniel Myers2, Lisa Szymecko1, Carla Cunningham Collins3, Sal Martinez4, Charo Ledón5, Terrance R Campbell6, Marion Danis7, Stephanie Solomon Cargill8, Hyungjin Myra Kim9, Zachary Rowe10.   

Abstract

OBJECTIVE: To learn how minority and underserved communities would set priorities for patient-centered outcomes research (PCOR). DATA SOURCES: Sixteen groups (n = 183) from minority and underserved communities in two states deliberated about PCOR priorities using the simulation exercise CHoosing All Together (CHAT). Most participants were minority, one-third reported income <$10,000, and one-fourth reported fair/poor health.
DESIGN: Academic-community partnerships adapted CHAT for PCOR priority setting using existing research agendas and interviews with community leaders, clinicians, and key informants. DATA COLLECTION: Tablet-based CHAT collected demographic information, individual priorities before and after group deliberation, and groups' priorities. PRINCIPAL
FINDINGS: Individuals and groups prioritized research on Quality of Life, Patient-Doctor, Access, Special Needs, and (by total resources spent) Compare Approaches. Those with less than a high school education were less likely to prioritize New Approaches, Patient-Doctor, Quality of Life, and Families/Caregivers. Blacks were less likely to prioritize research on Causes of Disease, New Approaches, and Compare Approaches than whites. Compare Approaches, Special Needs, Access, and Families/Caregivers were significantly more likely to be selected by individuals after compared to before deliberation.
CONCLUSIONS: Members of underserved communities, in informed deliberations, prioritized research on Quality of Life, Patient-Doctor, Special Needs, Access, and Compare Approaches. © Health Research and Educational Trust.

Entities:  

Keywords:  Patient-centered outcomes research; decision making; minority groups; research priorities; resource allocation

Mesh:

Year:  2016        PMID: 27206519      PMCID: PMC5346487          DOI: 10.1111/1475-6773.12505

Source DB:  PubMed          Journal:  Health Serv Res        ISSN: 0017-9124            Impact factor:   3.402


  9 in total

1.  Relation between agendas of the research community and the research consumer.

Authors:  D Tallon; J Chard; P Dieppe
Journal:  Lancet       Date:  2000-06-10       Impact factor: 79.321

2.  Healthcare justice and rational democratic deliberation.

Authors:  L Fleck
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Authors:  Marion Danis; Marjorie Ginsburg; Susan Goold
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5.  Public engagement in research funding: a study of public capabilities and engagement methodology.

Authors:  Gene Rowe; Dee Rawsthorne; Tracey Scarpello; Jack R Dainty
Journal:  Public Underst Sci       Date:  2010-03

6.  Choosing Healthplans All Together: a deliberative exercise for allocating limited health care resources.

Authors:  Susan Dorr Goold; Andrea K Biddle; Glenn Klipp; Charles N Hall; Marion Danis
Journal:  J Health Polit Policy Law       Date:  2005-08       Impact factor: 2.265

Review 7.  Allocating health care: cost-utility analysis, informed democratic decision making, or the veil of ignorance?

Authors:  S D Goold
Journal:  J Health Polit Policy Law       Date:  1996       Impact factor: 2.265

8.  The next step in the patient revolution: patients initiating and leading research.

Authors:  Effy Vayena
Journal:  BMJ       Date:  2014-07-01

9.  Why and when should we use public deliberation?

Authors:  Stephanie Solomon; Julia Abelson
Journal:  Hastings Cent Rep       Date:  2012 Mar-Apr       Impact factor: 2.683

  9 in total
  7 in total

1.  Adult Cancer Survivors' Engagement and Interest in Patient-Centered Research.

Authors:  Margaret M Lubas; Yan Lu; Aaron W Gehr; Bassam Ghabach; Bhavna Tanna; Kalyani Narra; Tara M Brinkman; Rohit P Ojha
Journal:  Cancer Epidemiol Biomarkers Prev       Date:  2019-11-18       Impact factor: 4.254

2.  Evaluation of a shared decision-making intervention for pediatric patients with asthma in the emergency department.

Authors:  Kelly Reeves; Katherine O'Hare; Lindsay Shade; Thomas Ludden; Andrew McWilliams; Melinda Manning; Melanie Hogg; Stacy Reynolds; Christopher M Shea; Elizabeth C Burton; Melissa Calvert; Diane M Derkowski; Hazel Tapp
Journal:  Implement Sci Commun       Date:  2020-03-04

Review 3.  Patient and public engagement in priority setting: A systematic rapid review of the literature.

Authors:  Elizabeth Manafò; Lisa Petermann; Virginia Vandall-Walker; Ping Mason-Lai
Journal:  PLoS One       Date:  2018-03-02       Impact factor: 3.240

4.  Evaluating community deliberations about health research priorities.

Authors:  Susan Dorr Goold; Marion Danis; Julia Abelson; Michelle Gornick; Lisa Szymecko; C Daniel Myers; Zachary Rowe; Hyungjin Myra Kim; Cengiz Salman
Journal:  Health Expect       Date:  2019-06-28       Impact factor: 3.377

5.  A systematic review to identify research priority setting in Black and minority ethnic health and evaluate their processes.

Authors:  Halima Iqbal; Jane West; Melanie Haith-Cooper; Rosemary R C McEachan
Journal:  PLoS One       Date:  2021-05-28       Impact factor: 3.752

6.  The Value of Engaging the Public in CHATing About Healthcare Priorities: A Response to Recent Commentaries.

Authors:  Marion Danis; Susan D Goold; Melinee Schindler; Samia A Hurst
Journal:  Int J Health Policy Manag       Date:  2019-04-01

7.  Nursing Research Priorities in Critical Care, Pulmonary, and Sleep: International Delphi Survey of Nurses, Patients, and Caregivers.

Authors:  Maureen George; Carme Hernandez; Sheree Smith; Georgia Narsavage; Mary C Kapella; Margaretann Carno; Jill Guttormson; Rebecca T Disler; Diana E Hart; Linda L Chlan; Mary Beth Happ; Zijing Chen; Breanna Hetland; Ana F Hutchinson; Helga Jonsdottir; Nancy S Redeker; Hildy Schell-Chaple; Monica Fletcher; Janelle Yorke
Journal:  Ann Am Thorac Soc       Date:  2020-01
  7 in total

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