Resources

2021 October Special Issue in Medical Decision Making (MDM).

The International Patient Decision Aid Standards (IPDAS) Collaboration: Evidence Update 2.0.

A special issue in Medical Decision Making includes two editorials on the context and history of the IPDAS Collaboration and 13 scientific review articles providing the latest evidence on 11 core IPDAS domains.

• Introduction Editorial: The International Patient Decision Aid Standards (IPDAS) Collaboration: Evidence Update 2.0.
• Commentary: History of IPDAS.
• Development Process: Systematic Development of Patient Decision Aids: An Update from the IPDAS Collaboration.
• Disclosing Conflicts of Interest: Addressing Conflicts of Interest in Health and Medicine: Current Evidence and Implications for Patient Decision Aid Development.
• Providing Information: Providing Balanced Information about Options in Patient Decision Aids: An Update from the International Patient Decision Aid Standards.
• Based on Scientific Evidence: Basing Information on Comprehensive, Critically Appraised, and Up-to-Date Syntheses of the Scientific Evidence: An Update from the International Patient Decision Aid Standards.
• Presenting Probabilities: Current Best Practice for Presenting Probabilities in Patient Decision Aids: Fundamental Principles.

  Current Challenges When Using Numbers in Patient Decision Aids: Advanced Concepts.

• Clarifying Values: Clarifying Values: An Updated and Expanded Systematic Review and Meta-Analysis.
• Using Personal Stories: Do Personal Stories Make Patient Decision Aids More Effective? An Update from the International Patient Decision Aids Standards.
• Health Literacy: Addressing Health Literacy in Patient Decision Aids: An Update from the International Patient Decision Aid Standards.

  A Systematic Review and Meta-Analysis of Patient Decision Aids for Socially Disadvantaged Populations: Update from the International Patient Decision Aid Standards (IDPAS).

• Guiding / Coaching: Guidance and/or Decision Coaching with Patient Decision Aids: Scoping Reviews to Inform the International Patient Decision Aid Standards (IPDAS).
• Establishing Effectiveness: Are We Improving? Update and Critical Appraisal of the Reporting of Decision Process and Quality Measures in Trials Evaluating Patient Decision Aids.
• Implementation: "What Works in Implementing Patient Decision Aids in Routine Clinical Settings? A Rapid Realist Review and Update from the International Patient Decision Aid Standards Collaboration.

2018 – IPDAS Declaration of Interest form

The IPDAS Declaration of Interest Form is used to manage conflicts, promote transparency, and adopt unbiased decisions that are in the best interest of the collaboration. Effectively managing interests – and identifying potential conflicts – is essential if policy makers, healthcare professionals, and the patients/public, are to maintain confidence in our work.

2018 – IPDAS Process for Updating Evidence Informing the IPDAS Checklist

The procedure outlining the process used for updating evidence information the IPDAS Checklist includes: call for the update, confirming co-leads for working group activities, working group activities, IPDAS Steering Committee approval of the proposal, after the proposed evidence-update is completed, and IPDAS Steering Committee approval of website update and criteria changes.

2018 – Reporting guidelines for patient decision aids

• The SUNDAE Checklist (Standards for UNiversal reporting of patient Decision Aid Evaluation studies) has 26-items and is intended for authors and researchers designing and reporting on studies evaluating patient decision aids. These guidelines are available on the EQUATOR reporting guidelines website.
• Advancing the science of patient decision aids through reporting guidelines. Volk RJ, Coulter A. BMJ Qual Saf. 2018 May;27(5):337-339. doi: 10.1136/bmjqs-2017-007657. Epub 2018 Jan 25.
• Explanation and elaboration of the Standards for UNiversal reporting of patient Decision Aid Evaluations (SUNDAE) guidelines: examples of reporting SUNDAE items from patient decision aid evaluation literature. Hoffman AS, Sepucha KR, Abhyankar P, Sheridan S, Bekker H, LeBlanc A, Levin C, Ropka M, Shaffer V, Stacey D, Stalmeier P, Vo H, Wills C, Thomson R. BMJ Qual Saf. 2018 May;27(5):380-388. doi: 10.1136/bmjqs-2017-006986. Epub 2017 Dec 21.
• Standards for UNiversal reporting of patient Decision Aid Evaluation studies: the development of SUNDAE Checklist. Sepucha KR, Abhyankar P, Hoffman AS, Bekker HL, LeBlanc A, Levin CA, Ropka M, Shaffer VA, Sheridan SL, Stacey D, Stalmeier P, Vo H, Wills CE, Thomson R. BMJ Qual Saf. 2018 May;27(5):389-412. doi: 10.1136/bmjqs-2017-006985. Epub 2018 Feb 21.

2017 IPDAS Deliverables, Impact & Next Steps.

Presentation made at the Society for Medical Decision Making held in Pittsburgh, USA.

2015 Feasibility and Application of Proposed Certification Criteria

• Specifying minimum standards for patient decision support interventions is a feasible development. However, it remains unclear whether the minimum standards can be applied to interventions designed for use within clinical encounters and to those that target screening and diagnostic tests.
• Reference: Minimum standards for the certification of patient decision support interventions: Feasibility and application. Durand MA, Witt J, Joseph-Williams N, Newcombe RG, Politi MC, Sivell S, Elwyn G. Patient Educ Couns. 2014 Dec 31. pii: S0738-3991(14)00531-X. doi: 10.1016/j.pec.2014.12.009.

2014 Manual con criterios de evaluación y validación de las Herramientas de Ayuda para la Toma de Decisiones

A Spanish summary version of the "The International Patient Decision Aid Standards (IPDAS) Collaboration's Quality Dimensions: Theoretical Rationales, Current Evidence, and Emerging Issues" series that appeared in the 2013 November Supplement in BMC Medical Informatics and Decision Making.

2013 November Supplement in BMC Medical Informatics and Decision Making.

The International Patient Decision Aid Standards (IPDAS) Collaboration's Quality Dimensions: Theoretical Rationales, Current Evidence, and Emerging Issues.

This 2013 series begins with a paper describing a) the ten-year evolution of the IPDAS Collaboration itself and b) IPDAS's 12 core dimensions for assessing the quality of patient decision aids. Next, 12 papers present an updated theoretical rationale, the current empirical evidence, and the emerging issues underlying each of these core evaluative dimensions. Finally, the series closes with a systematic review of the implementation of patient decision support interventions into routine clinical practice. A total of 102 authors from 10 countries contributed to this supplement.

• Introduction: Ten years of the International Patient Decision Aid Standards Collaboration: evolution of the core dimensions for assessing the quality of patient decision aids.
• Development Process: A systematic development process for patient decision aids.
• Disclosing Conflicts of Interest: Disclosing conflicts of interest in patient decision aids.
• Providing Information: Providing information about options in patient decision aids.
• Based on Scientific Evidence: Basing information on comprehensive, critically appraised, and up-to-date syntheses of the scientific evidence: a quality dimension of the International Patient Decision Aid Standards.
• Balanced Presentation: Balancing the presentation of information and options in patient decision aids: an updated review.
• Presenting Probabilities: Presenting quantitative information about decision outcomes: a risk communication primer for patient decision aid developers.
• Clarifying Values: Clarifying values: an updated review.
• Using Personal Stories: Do personal stories make patient decision aids more effective? A critical review of theory and evidence.
• Health Literacy: Addressing health literacy in patient decision aids.
• Guiding / Coaching: Coaching and guidance with patient decision aids: A review of theoretical and empirical evidence.
• Establishing Effectiveness: Establishing the effectiveness of patient decision aids: key constructs and measurement instruments.
• Delivering on Internet: Delivering patient decision aids on the Internet: definitions, theories, current evidence, and emerging research areas.
• Implementation: "Many miles to go …": a systematic review of the implementation of patient decision support interventions into routine clinical practice.

2013 Proposed Certification Criteria

• A 44 item subset of the original checklist was proposed with criteria classified as qualifying (n=6), certifying (n=10), and quality (n=28). The subset were chosen using a 2 stage Delphi process with participants asked if the omission of an IPDAS criteria would lead to a risk of harmful bias and potential negative impact on patients' decision making.
• Reference: Toward Minimum Standards for Certifying Patient Decision Aids: A Modified Delphi Consensus Process. Joseph-Williams N, Newcombe R, Politi M, Durand MA, Sivell S, Stacey D, O'Connor A, Volk RJ, Edwards A, Bennett C, Pignone M, Thomson R, Elwyn G. Medical Decision Making. 2014 Aug;34(6):699-710. doi: 10.1177/0272989X13501721. Epub 2013 Aug 20.

2013 IPDAS Voting Document on Risk of Bias

• Document used to create the online voting website.
• Voters were asked to indicate the risk of harmful bias if the patient decision aid did not meet the requirement of the criterion.

2013 Update of the IPDAS Story

An update to the overview of the activities of the International Patient Decision Aid Standards (IPDAS) Collaboration originally presented at the 2011 International Shared Decision Making Conference held in Maastricht, Netherlands.

2013 IPDAS email list

The IPDAS email list, IPDAS@listserv.dartmouth.edu, will be used:

1. as a membership register,
2. to communicate,
3. to agree on a process to convene a Steering Group (vote for chair/members),
4. for future research / development of the criteria.

To be added, ask a current member to introduce you by citing your interest and expertise relevant to IPDAS. If you don't know a member, see the Who's Involved? page.

2012 Update of the IPDAS Collaboration Background Document

Introduction

Chapter A: Using a Systematic Development Process

Chapter B: Providing Information About Options

Chapter C: Presenting Probabilities

Chapter D: Clarifying and Expressing Values

Chapter E: Using Personal Stories

Chapter F: Guiding / Coaching in Deliberation and Communication

Chapter G: Disclosing Conflicts of Interest

Chapter H: Delivering Decision Aids on the Internet

Chapter I: Balancing The Presentation of Information and Options

Chapter J: Addressing Health Literacy

Chapter K: Basing Information On Comprehensive, Critically Appraised, And Up-To-Date Syntheses Of The Scientific Evidence

Chapter L: Establishing the Effectiveness

2012 Implementation of Patient Decision Support Interventions into Routine Clinical Practice: A Systematic Review

2012 Provide Suggestions for IPDAS Quality Dimensions

2009 IPDASi Assessment

• The IPDAS instrument of 47 items was developed to rate the IPDAS criteria on a 4 point scale from strongly agree to strongly disagree. IPDASi raters were trained and calibrated to conduct these assessments.
• Reference: Assessing the quality of decision support technologies using the International Patient Decision Aid Standards instrument (IPDASi). Elwyn G, O'Connor AM, Bennett C, Newcombe RG, Politi M, Durand MA, Drake E, Joseph-Williams N, Khangura S, Saarimaki A, Sivell S, Stiel M, Bernstein SJ, Col N, Coulter A, Eden K, Härter M, Rovner MH, Moumjid N, Stacey D, Thomson R, Whelan T, van der Weijden T, Edwards A. PLoS One. 2009;4(3):e4705.

2006 Original IPDAS Checklist

• The 64 item Checklist can be used to rate the IPDAS criteria as present or absent. Note that some of the 74 individual criteria were combined (e.g., identical criterion for patients and practitioners). The small numbers after each item refer back to the original criteria that were voted on.
• The 2-stage Delphi process resulted in 74 of 83 criteria being retained based on having an importance ranking of 7 or higher on a 1 to 9 scale. Details can be found here, in a PDF of additional information from the BMJ article.
• Reference: Developing a quality criteria framework for patient decision aids: online international Delphi consensus process. Elwyn G, O'Connor A, Stacey D, Volk R, Edwards A, Coulter A, Thomson R, Barratt A, Barry M, Bernstein S, Butow P, Clarke A, Entwistle V, Feldman-Stewart D, Holmes-Rovner M, Llewellyn-Thomas H, Moumjid N, Mulley A, Ruland C, Sepucha K, Sykes A, Whelan T; International Patient Decision Aids Standards (IPDAS) Collaboration. BMJ. 2006 Aug 26;333(7565):417.

2005 IPDAS Collaboration Reaches Consensus On Indicators For Judging the Quality of Patient Decision Aids [297KB PDF]

Presented at the 27th Annual Meeting of the Society for Medical Decision Making (October 21-24, 2005) San Francisco, CA, USA.

2005 Second Round Voting Document [377KB PDF]

• This revised voting document also includes:
  • A summary of the 1st round results for the 12 broad criteria
  • The equimedian score for each of the 80 criteria in the 1st round of voting. Equimedians were calculated to equalise the effect of the different voter numbers in the 4 key stakeholder groups (policy maker / health plan administrators, patients / consumer representatives, health practitioners, decision aid developers/researchers)
  • The frequency counts of the 1 to 9 ratings for each of the 80 criteria in the 1st round of voting
• This document was used to revise the voting website and as a PDF document available on the voting website for those preferring to vote on paper.
• Voters were asked consider the results from the 1st round of voting when re-voting on the importance of each criterion for judging the quality of a patient decision aid.

2005 First Round Voting Document [313KB PDF]

• A collection of summary statements for each of the 12 broad criteria with a total of 80 voting items.
• This document was used to create the voting website at Baylor College of Medicine (B Volk and colleagues) and was available as a PDF on the voting website for those preferring to vote on paper.
• Voters were asked to vote on the importance of each criterion when judging the quality of a patient decision aid.

2005 Original IPDAS Collaboration Background Document [414KB PDF]

• A summary of the definitions as well as theoretical and empirical links between each of the 12 broad quality criteria and decision quality.
• The 12 broad criteria include: systematic development process, information on options, presenting probabilities, clarifying values, patient stories, disclosing conflicts of interest, delivering decision aids on the Internet, balanced presentation of options, using plain language, information based on scientific evidence, establishing effectiveness.
• The primary evidence sources were the Cochrane Review of 34 randomized controlled trials evaluating patient decision aids with real patients facing health decisions (2003 update) and fundamental studies.
• This document was used to inform the summary statements for each of the 12 broad categories and the identification of the original set of voting criteria.
• It was available during the voting process for voters interested in learning more about the 12 broad criteria.

Very useful for training students. I ask them to "vote using the 1st round document, then give them feedback using 2nd round document results." As well, students developing patient decision aids find the background document very useful.

A O'Connor PhD, Professor at the University of Ottawa (June 2005)

I teach a research course about the theories, study designs, and methods used to study patients' decision making. The course includes, but isn't confined to, the topic of Shared Decision Making/Patients' Decision Aids (SDM/PtDAs). The individual sections of the IPDAS Collaboration Background Document are rich reading resources for the students, as we move through the different topic areas of the course. For example, the principles outlined in Section B (providing information about therapeutic options) and in Section C (presenting probabilities) are highly relevant to problems outside the SDM/PtDA context, such as developing ways to measure the Minimal Clinically Important Difference that patients would want from a new therapy that's going to be assessed in a clinical trial.

H Llewellyn-Thomas PhD, Professor at Dartmouth Medical School (June 2005)

Related Publications

Feldman-Stewart D, Brennenstuhl S, McIsaac K, Austoker J, Charvet A, Hewitson P, Sepucha KR & Whelan T. A Systematic Review of Information in Decision Aids. Health Expectations 10 (1), 46-61. 2007.

Legislation

Washington State Legislature Health Care bill includes decision aids. SB 5930 - 2007-08 Providing high quality, affordable health care to Washingtonians based on the recommendations of the blue ribbon commission on health care costs and access. August 2007.

Decision Quality

Sepucha, KR, Fowler, FJ, & Mulley, AG. Policy support for patient-centered care: The need for measurable improvements in decision quality. Health Affairs. 2004.

Risk Communication

Trevena L, Davey HM, Barratt A, Butow P, Caldwell P. A systematic review on communicating with patients about evidence. Journal of Evaluation in Clinical Practice. 2006.

Barratt A, Trevena L, Davey HM, & McCaffery, K. Use of decision aids to support informed choices about screening. British Medical Journal, 329, 507-510. 2004.

Values Clarification

O'Connor AM, Stacey D, Tugwell P, & Guyatt G. Incorporating patient values. In A DiCenso, G Guyatt, & D Ciliska (Eds.), Evidence-based nursing: A guide to clinical practice. Toronto: Mosby. 2005.

Fagerlin A, Pignone M, Abhyankar P, Col N, Feldman-Stewart D, Gavaruzzi T, Kryworuchko J, Levin CA, Pieterse AH, Reyna V, Stiggelbout A, Scherer LD, Wills C, Witteman HO. Clarifying values: an updated review. BMC Med Inform Decis Mak. 2013;13 Suppl 2:S8. doi: 10.1186/1472-6947-13-S2-S8. Epub 2013 Nov 29.

Witteman HO, Gavaruzzi T, Scherer LD, Pieterse AH, Fuhrel-Forbis A, Chipenda Dansokho S, Exe N, Kahn VC, Feldman-Stewart D, Col NF, Turgeon AF, Fagerlin A. Effects of Design Features of Explicit Values Clarification Methods: A Systematic Review. Med Decis Making. 2016 Aug;36(6):760-76. doi: 10.1177/0272989X16634085. Epub 2016 Apr 4.

Witteman HO, Scherer LD, Gavaruzzi T, Pieterse AH, Fuhrel-Forbis A, Chipenda Dansokho S, Exe N, Kahn VC, Feldman-Stewart D, Col NF, Turgeon AF, Fagerlin A. Design Features of Explicit Values Clarification Methods: A Systematic Review. Med Decis Making. 2016 May;36(4):453-71. doi: 10.1177/0272989X15626397. Epub 2016 Jan 29.