OpenLB
Open Library of Bioscience
Advanced Search
The patient
02, 2020;13 (1): 11-21.

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

Dmitry Khodyakov, Sean Grant, Brian Denger, Kathi Kinnett, Ann Martin, Holly Peay, Ian Coulter
Author Information
  1. Dmitry Khodyakov: RAND Health Care, RAND Corporation, 1776 Main Street, PO Box 2138, Santa Monica, CA, USA. Dmitry_Khodyakov@rand.org. ORCID
  2. Sean Grant: RAND Health Care, RAND Corporation, 1776 Main Street, PO Box 2138, Santa Monica, CA, USA.
  3. Brian Denger: Parent Project Muscular Dystrophy, Hackensack, NJ, USA.
  4. Kathi Kinnett: Parent Project Muscular Dystrophy, Hackensack, NJ, USA.
  5. Ann Martin: Parent Project Muscular Dystrophy, Hackensack, NJ, USA.
  6. Holly Peay: RTI International, Research Triangle Park, NC, USA.
  7. Ian Coulter: RAND Health Care, RAND Corporation, 1776 Main Street, PO Box 2138, Santa Monica, CA, USA.
PMID: 31544219 DOI: 10.1007/s40271-019-00389-4

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.

References

  1. Qual Assur Health Care. 1992 Jun;4(2):151-9 [PMID: 1511149]
  2. Otolaryngol Head Neck Surg. 2014 Oct;151(4):530-2 [PMID: 25085323]
  3. PLoS One. 2018 Jul 30;13(7):e0201378 [PMID: 30059560]
  4. J Gen Intern Med. 2016 Jan;31(1):13-21 [PMID: 26160480]
  5. J Med Internet Res. 2012 Oct 26;14(5):e138 [PMID: 23103790]
  6. Patient. 2018 Jun;11(3):353-359 [PMID: 29299833]
  7. J Adv Nurs. 2000 Oct;32(4):1008-15 [PMID: 11095242]
  8. Am J Public Health. 1984 Sep;74(9):979-83 [PMID: 6380323]
  9. Patient. 2011;4(1):1-10 [PMID: 21766889]
  10. Lancet Neurol. 2018 Mar;17(3):251-267 [PMID: 29395989]
  11. BMC Med Res Methodol. 2011 Dec 23;11:174 [PMID: 22196011]
  12. JMIR Res Protoc. 2017 Apr 28;6(4):e57 [PMID: 28455279]
  13. Spine J. 2010 Jun;10(6):514-29 [PMID: 20494814]
  14. AJOB Empir Bioeth. 2019 Oct-Dec;10(4):265-275 [PMID: 31580791]
  15. Orphanet J Rare Dis. 2019 Aug 20;14(1):205 [PMID: 31429780]
  16. Patient. 2014;7(3):261-70 [PMID: 24862378]
  17. Qual Saf Health Care. 2010 Oct;19(5):e22 [PMID: 20427302]
  18. Eur J Pers Cent Healthc. 2019;7(3):470-475 [PMID: 34277012]
  19. Trials. 2014 Apr 10;15:118 [PMID: 24721114]
  20. BMJ. 2006 Aug 26;333(7565):417 [PMID: 16908462]
  21. BMC Neurol. 2014 Oct 04;14:190 [PMID: 25280531]
  22. Patient. 2018 Apr;11(2):155-166 [PMID: 29030831]
  23. J Am Med Inform Assoc. 2017 May 01;24(3):537-543 [PMID: 28011596]
  24. J Clin Epidemiol. 2018 Jul;99:96-105 [PMID: 29559324]
  25. Eur J Pers Cent Healthc. 2019;7(3):476-489 [PMID: 34422276]
  26. Ann Intern Med. 2012 Apr 3;156(7):525-31 [PMID: 22473437]
  27. Transl Res. 2016 May;171:52-62.e1 [PMID: 26773561]
  28. PLoS Med. 2010 Feb 16;7(2):e1000217 [PMID: 20169112]
  29. BMC Res Notes. 2016 Jan 07;9:16 [PMID: 26744077]
  30. PLoS One. 2011;6(6):e20476 [PMID: 21694759]
  31. Neuromuscul Disord. 2016 Dec;26(12):853-859 [PMID: 27856129]
  32. Patient. 2017 Jun;10(3):277-282 [PMID: 27830457]
  33. J Clin Epidemiol. 2017 Aug;88:102-112 [PMID: 28579379]
  34. Patient. 2017 Jun;10(3):271-276 [PMID: 28097637]
  35. Nurse Res. 2012;19(2):37-44 [PMID: 22338807]
  36. Proc Am Thorac Soc. 2012 Dec;9(5):225-8 [PMID: 23256163]
  37. Med Decis Making. 2011 Nov-Dec;31(6):E45-74 [PMID: 21959267]
  38. Implement Sci. 2018 Apr 16;13(1):55 [PMID: 29661195]
  39. Proc Am Thorac Soc. 2012 Dec;9(5):269-73 [PMID: 23256170]
  40. J Eval Clin Pract. 2017 Apr;23(2):354-360 [PMID: 27619536]
  41. J Fam Plann Reprod Health Care. 2006 Oct;32(4):249-52 [PMID: 17032518]
  42. Annu Rev Genomics Hum Genet. 2013;14:579-95 [PMID: 23875802]
  43. N Engl J Med. 1998 Jun 25;338(26):1888-95 [PMID: 9637810]

Grants

  1. ME-1507-31052/Patient-Centered Outcomes Research Institute

MeSH Term

Caregivers
Delphi Technique
Humans
Internet
Muscular Dystrophy, Duchenne
Patient Participation
Pilot Projects
Research Design
Stakeholder Participation
Journal Article Research Support, Non-U.S. Gov't
Article has an altmetric score of 5

Word Cloud

Created with Highcharts 10.0.0engagementcaregiversdevelopmentPatientsstakeholdersguidelinesOnlinerigorouspaperonlinemodified-DelphiapproachusedparticipantdeterminingDMDincreasinglyrecognizedkeydevelopingclinicalpracticeCPGsapproachesofferpromisescalableconvenientmethodillustratesengagepatientsstakeholderCPGprovidespracticalguidanceconductingpanelscovers1jointrelevant2adaptationmethodsexpertsguideline3pilottesting4recruitment5panelsizecomposition6buildingcapacity7facilitationtwo-wayinteraction8continuousretentionparticipants9dataanalysis10evaluationactivities11resultdisseminationbasedrecentlycompletedstudyengagingindividualsDuchennemusculardystrophypatient-centerednesscarePracticalConsiderationsUsingModified-DelphiApproachesEngageStakeholdersClinicalPracticeGuidelineDevelopment

Similar Articles

Cited By