» Articles » PMID: 31544219

Practical Considerations in Using Online Modified-Delphi Approaches to Engage Patients and Other Stakeholders in Clinical Practice Guideline Development

Overview
Journal Patient
Specialty Health Services
Date 2019 Sep 24
PMID 31544219
Citations 42
Authors
Affiliations
Soon will be listed here.
Abstract

Patients and caregivers are increasingly recognized as key stakeholders in developing clinical practice guidelines (CPGs). Online engagement approaches offer the promise of a rigorous, scalable, and convenient engagement method. This paper illustrates how an online modified-Delphi approach could be used to engage patients, caregivers, and other stakeholder in CPG development. It provides practical guidance for conducting online modified-Delphi panels that covers (1) joint development of the engagement approach with relevant stakeholders, (2) adaptation of methods used by experts in guideline development, (3) pilot testing, (4) participant recruitment, (5) determining panel size and composition, (6) building participant capacity, (7) facilitation of two-way interaction, (8) continuous engagement and retention of participants, (9) rigorous data analysis, (10) evaluation of engagement activities, and (11) result dissemination. The paper is based on a recently completed study about engaging individuals with Duchenne muscular dystrophy (DMD) and their caregivers in determining the patient-centeredness of DMD care guidelines.

Citing Articles

Removing barriers to management of adults with type 2 diabetes on insulin using continuous glucose monitoring in UK primary care practice: An expert consensus.

Seidu S, Avery L, Bell H, Brown P, Diggle J, Down S Diabet Med. 2024; 42(3):e15500.

PMID: 39676327 PMC: 11823331. DOI: 10.1111/dme.15500.


Implementation science research priorities for Universal Health Coverage: methodological lessons from the design and implementation of a multicountry modified Delphi study.

Wodnik B, Namyalo P, Michaelides O, Essue B, Kane S, Di Ruggiero E Health Policy Plan. 2024; 40(3):422-427.

PMID: 39658269 PMC: 11886793. DOI: 10.1093/heapol/czae119.


What are the priority welfare issues facing parrots in captivity? A modified Delphi approach to establish expert consensus.

Chalmers R, Cooper J, Ventura B Anim Welf. 2024; 33:e54.

PMID: 39600356 PMC: 11589074. DOI: 10.1017/awf.2024.57.


Guidance for engagement in health guideline development: A scoping review.

Petkovic J, Riddle A, Lytvyn L, Khabsa J, Akl E, Welch V Campbell Syst Rev. 2024; 20(4):e70006.

PMID: 39588485 PMC: 11586780. DOI: 10.1002/cl2.70006.


Assessing the feasibility and likelihood of policy options to lower specialty drug costs.

Taylor E, Khodyakov D, Predmore Z, Buttorff C, Kim A Health Aff Sch. 2024; 2(10):qxae118.

PMID: 39416396 PMC: 11482634. DOI: 10.1093/haschl/qxae118.


References
1.
Leape L, Park R, Kahan J, Brook R . Group judgments of appropriateness: the effect of panel composition. Qual Assur Health Care. 1992; 4(2):151-9. View

2.
Roman B, Feingold J . Patient-centered guideline development: best practices can improve the quality and impact of guidelines. Otolaryngol Head Neck Surg. 2014; 151(4):530-2. DOI: 10.1177/0194599814544878. View

3.
Ann Hall D, Smith H, Heffernan E, Fackrell K . Recruiting and retaining participants in e-Delphi surveys for core outcome set development: Evaluating the COMiT'ID study. PLoS One. 2018; 13(7):e0201378. PMC: 6066228. DOI: 10.1371/journal.pone.0201378. View

4.
Forsythe L, Ellis L, Edmundson L, Sabharwal R, Rein A, Konopka K . Patient and Stakeholder Engagement in the PCORI Pilot Projects: Description and Lessons Learned. J Gen Intern Med. 2015; 31(1):13-21. PMC: 4700002. DOI: 10.1007/s11606-015-3450-z. View

5.
den Breejen E, Nelen W, Knijnenburg J, Burgers J, Hermens R, Kremer J . Feasibility of a wiki as a participatory tool for patients in clinical guideline development. J Med Internet Res. 2012; 14(5):e138. PMC: 3510744. DOI: 10.2196/jmir.2080. View