Literature DB >> 28374286

Deliberative Engagement Methods for Patient-Centered Outcomes Research.

Stephanie R Morain1, Danielle M Whicher2, Nancy E Kass3, Ruth R Faden4.   

Abstract

There is growing emphasis on eliciting and incorporating stakeholder perspectives into health research and public policy development. The deliberative engagement session (DES) method provides one approach to elicit informed preferences from patients and other stakeholders on policy issues. DES involves day-long interaction with participants, including short plenary presentations followed by small group discussion. While interest in DES methods is expanding, practical guidance for researchers on this method remains limited. In this paper, we describe the DES method and its contemporary relevance for health policy research, illustrate how to conduct a DES using an example of a recent patient-centered outcomes research (PCOR) study with which we were involved, and discuss strengths and challenges of using this approach. DES methods generate rich data, reduce the risk of eliciting uniformed preferences or non-attitudes, and increase the likelihood of eliciting informed, reflective preferences. However, they are resource-intensive, and thus generally require trading away a larger, more representative sample. Despite these limitations, the DES method, when carefully designed, is well-suited for engaging stakeholders in research on complex health policy issues.

Entities:  

Keywords:  Comparative Effectiveness Research; Engaging Stakeholder; Exit Interview; Policy Issue; Procedural Fairness

Mesh:

Year:  2017        PMID: 28374286     DOI: 10.1007/s40271-017-0238-8

Source DB:  PubMed          Journal:  Patient        ISSN: 1178-1653            Impact factor:   3.883


  20 in total

Review 1.  Deliberations about deliberative methods: issues in the design and evaluation of public participation processes.

Authors:  Julia Abelson; Pierre-Gerlier Forest; John Eyles; Patricia Smith; Elisabeth Martin; Francois-Pierre Gauvin
Journal:  Soc Sci Med       Date:  2003-07       Impact factor: 4.634

2.  Citizens' values regarding research with stored samples from newborn screening in Canada.

Authors:  Yvonne Bombard; Fiona A Miller; Robin Z Hayeems; June C Carroll; Denise Avard; Brenda J Wilson; Julian Little; Jessica P Bytautas; Judith Allanson; Renata Axler; Yves Giguere; Pranesh Chakraborty
Journal:  Pediatrics       Date:  2012-01-16       Impact factor: 7.124

3.  Integrating mixed methods in health services and delivery system research.

Authors:  William L Miller; Benjamin F Crabtree; Michael I Harrison; Mary L Fennell
Journal:  Health Serv Res       Date:  2013-12       Impact factor: 3.402

4.  Achieving integration in mixed methods designs-principles and practices.

Authors:  Michael D Fetters; Leslie A Curry; John W Creswell
Journal:  Health Serv Res       Date:  2013-10-23       Impact factor: 3.402

5.  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

Review 6.  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

7.  Patient Involvement in the Design of a Patient-Centered Clinical Trial to Promote Adherence to Supplemental Oxygen Therapy in COPD.

Authors:  Kristen E Holm; Richard Casaburi; Scott Cerreta; Hélène A Gussin; Julian Husbands; Janos Porszasz; Valentin Prieto-Centurion; Robert A Sandhaus; Jamie L Sullivan; Linda J Walsh; Jerry A Krishnan
Journal:  Patient       Date:  2016-06       Impact factor: 3.883

8.  Assessing the public's views in research ethics controversies: deliberative democracy and bioethics as natural allies.

Authors:  Scott Y H Kim; Ian F Wall; Aimee Stanczyk; Raymond De Vries
Journal:  J Empir Res Hum Res Ethics       Date:  2009-12       Impact factor: 1.742

9.  Community engagement for big epidemiology: deliberative democracy as a tool.

Authors:  Rebekah E McWhirter; Christine R Critchley; Dianne Nicol; Don Chalmers; Tess Whitton; Margaret Otlowski; Michael M Burgess; Joanne L Dickinson
Journal:  J Pers Med       Date:  2014-11-20

10.  Using deliberative techniques to engage the community in policy development.

Authors:  Judy Gregory; Janette Hartz-Karp; Rebecca Watson
Journal:  Aust New Zealand Health Policy       Date:  2008-07-16
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  10 in total

1.  Addressing Health Disparities Through Deliberative Methods: Citizens' Panels for Health Equity.

Authors:  Andrew M Subica; Brandon J Brown
Journal:  Am J Public Health       Date:  2019-12-19       Impact factor: 9.308

Review 2.  Practical Considerations for Using Online Methods to Engage Patients in Guideline Development.

Authors:  Sean Grant; Glen S Hazlewood; Holly L Peay; Ann Lucas; Ian Coulter; Arlene Fink; Dmitry Khodyakov
Journal:  Patient       Date:  2018-04       Impact factor: 3.883

3.  MindKind: A mixed-methods protocol for the feasibility of global digital mental health studies in young people.

Authors: 
Journal:  Wellcome Open Res       Date:  2022-05-12

4.  Different corticosteroid induction regimens in children and young people with juvenile idiopathic arthritis: the SIRJIA mixed-methods feasibility study.

Authors:  Ashley P Jones; Dannii Clayton; Gloria Nkhoma; Frances C Sherratt; Matthew Peak; Simon R Stones; Louise Roper; Bridget Young; Flora McErlane; Tracy Moitt; Athimalaipet V Ramanan; Helen E Foster; Paula R Williamson; Samundeeswari Deepak; Michael W Beresford; Eileen M Baildam
Journal:  Health Technol Assess       Date:  2020-07       Impact factor: 4.014

5.  Public Attitudes toward Consent When Research Is Integrated into Care-Any "Ought" from All the "Is"?

Authors:  Stephanie R Morain; Emily A Largent
Journal:  Hastings Cent Rep       Date:  2021-03       Impact factor: 2.683

6.  Protective parents and permissive children: what qualitative interviews with parents and children can tell us about the feasibility of juvenile idiopathic arthritis trials.

Authors:  Frances C Sherratt; Louise Roper; Simon R Stones; Flora McErlane; Matthew Peak; Michael W Beresford; Helen Foster; Athimalaipet V Ramanan; Madeleine Rooney; Eileen Baildam; Bridget Young
Journal:  Pediatr Rheumatol Online J       Date:  2018-12-04       Impact factor: 3.054

7.  Stakeholder perspectives regarding alternate approaches to informed consent for comparative effectiveness research.

Authors:  Stephanie R Morain; Ellen Tambor; Rachael Moloney; Nancy E Kass; Sean Tunis; Kristina Hallez; Ruth R Faden
Journal:  Learn Health Syst       Date:  2017-12-05

8.  Eliciting patient views on the allocation of limited healthcare resources: a deliberation on hepatitis C treatment in the Veterans Health Administration.

Authors:  Akbar K Waljee; Kerry A Ryan; Chris D Krenz; George N Ioannou; Lauren A Beste; Monica A Tincopa; Sameer D Saini; Grace L Su; Maria E Arasim; Patti T Roman; Brahmajee K Nallamothu; Raymond De Vries
Journal:  BMC Health Serv Res       Date:  2020-05-01       Impact factor: 2.655

9.  Preparing newborn screening for the future: a collaborative stakeholder engagement exploring challenges and opportunities to modernizing the newborn screening system.

Authors:  Sara M Andrews; Katherine Ackerman Porter; Donald B Bailey; Holly L Peay
Journal:  BMC Pediatr       Date:  2022-02-12       Impact factor: 2.125

10.  Infringement of the right to surgical informed consent: negligent disclosure and its impact on patient trust in surgeons at public general hospitals - the voice of the patient.

Authors:  Gillie Gabay; Yaarit Bokek-Cohen
Journal:  BMC Med Ethics       Date:  2019-10-28       Impact factor: 2.652

  10 in total

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