IPDAS Deliverables, Impact, & Next Steps

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IPDAS Deliverables, Impact, & Next Steps 2003-2017 IPDAS Steering Committee: Dawn Stacey/Pending (Co-Leads), M Barry, N Col, A Coulter, M Härter, V Montori, N Moumjid, M Pignone, R Thomson, L Trevena, R Volk, T van der Weijden

International Patient Decision Aid Standards (IPDAS) Collaboration Purpose: To enhance the quality and effectiveness of patient decision aids by establishing a shared evidence-informed framework for improving their content, development, implementation, and evaluation.

International Patient Decision Aid Standards (IPDAS) Collaboration Steering Committee Functions: 1. Oversee process for maintaining/revising IPDAS criteria 2. Provide guidance to enhance reporting of research on PtDAs 3. Facilitate stakeholder involvement in IPDAS 4. Disseminate and implement IPDAS criteria by overseeing and setting principles for: - use and refinement of the IPDASi instrument - production of quality-assured IPDAS training materials 5. Monitor progress of IPDAS working groups 6. Approve consensus statements and publication of IPDAS

International Patient Decision Aid Standards (IPDAS) Collaboration IPDAS@listserv.dartmouth.edu This IPDAS email list is used: 1) as a membership register 2) to communicate 3) to agree on a process to convene a Steering Group 4) for future research / development of the IPDAS 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 Who s Involved on the IPDAS website at http://ipdas.ohri.ca

IPDAS Phases 2003-2006 IPDAS Checklist 2006-2009 IPDASi Instrument 2009-2013 IPDAS Minimal Standards 2011-2013 Updated evidence underlying the IPDAS Checklist 2014-2017 Reporting guidelines

International Patient Decision Aid Standards (IPDAS) Collaboration Objective: To establish internationally approved criteria to determine the quality of patient decision aids. These criteria are helpful to individuals and organizations that use and/or develop patient decision aids: Patients Practitioners Developers Researchers Policy makers or payers To learn more, visit: ipdas.ohri.ca >100 participants from 14 countries Elwyn, et al., BMJ. 2006 Aug 26; 333(7565):417. http://www.ncbi.nlm.nih.gov/pubmed/16908462

International Patient Decision Aids Standards Collaboration Quality Criteria 12 Dimensions Essential Content Information Probabilities Values clarification Guidance Patient Stories Effectiveness Criteria Decision process Decision quality Generic Criteria Development process Disclosure Internet delivery Balance Plain language Up to date evidence Elwyn, et al., BMJ. 2006 Aug 26; 333(7565):417. http://www.ncbi.nlm.nih.gov/pubmed/16908462

Summarized evidence to inform voters Elwyn, et al., BMJ. 2006 Aug 26; 333(7565):417. http://www.ncbi.nlm.nih.gov/pubmed/16908462

Modified Delphi Consensus Voting for developing the IPDAS Checklist (n=83 criteria from 12 dimensions) Example of a voting screen for one criterion Elwyn, et al., BMJ. 2006 Aug 26; 333(7565):417. http://www.ncbi.nlm.nih.gov/pubmed/16908462

Results Only 5/16 criteria with differences between stakeholders, had medians that straddled threshold for inclusion 10 9 Probabilities: select way to view Evidence: steps used to select included 8 7 6 5 4 3 2 Update: reports how Probabilities: place chance in context often updated Policy Internet: search key words Patients Practitioner Research 1 0 P2.I.1 P2.I.6 P2.III.8 P2.III.9 P2.III.10 P2.VI.1 P2.VI.2 P2.VI.3 P2.VI.4 P2.VI.5 P2.VIII.2 P2.X.1 P2.X.2 P2.XI.2 P2.XI.4 P2.XI.5a Elwyn, et al., BMJ. 2006 Aug 26; 333(7565):417. http://www.ncbi.nlm.nih.gov/pubmed/16908462

IPDAS Checklist 74 items in 11 dimensions checked Yes/No (based on equimedian rating of 7 to 9 without disagreement) Elwyn, et al., BMJ. 2006 Aug 26; 333(7565):417. http://www.ncbi.nlm.nih.gov/pubmed/16908462

Elwyn, et al., BMJ. 2006 Aug 26; 333(7565):417. http://www.ncbi.nlm.nih.gov/pubmed/16908462

IPDAS Phases 2003-2006 IPDAS Checklist 2006-2009 IPDASi Instrument 2009-2013 IPDAS Minimal Standards 2011-2013 Updated evidence underlying the IPDAS Checklist 2014-2017 Reporting guidelines

Developing the Instrument IPDASi To develop, validate and report the inter-rater reliability of an instrument designed to measure the quality of patient decision support tools Stage 1 Refinement and preparation of instrument (version 1) Stage 2 Confirmation of items (version 2) Stage 3 Validation Study (version 3) Elwyn, et al., PLoS One. 2009;4(3):e4705. http://www.ncbi.nlm.nih.gov/pubmed/19259269

IPDASi uses a 4-point scale with items descriptors (strongly agree to strongly disagree) Elwyn, et al., PLoS One. 2009;4(3):e4705. http://www.ncbi.nlm.nih.gov/pubmed/19259269

IPDASi Validation Study Methods: Two trained and calibrated raters independently appraised: - 15 decision aids from five major producers Healthwise (n=3) Mayo Clinic (n=3) Midwives Information and Resource Service (n=3) Ottawa Patient Decision Aid Research Group (n=3) Informed Medical Decisions Foundation (n=3) - 15 decision aids randomly selected from Cochrane Inventory Findings: After adjusting for hawks/doves IPDASi (47 items) 33 to 82 (0-100) averaged scores for decision aids 0.80 Intraclass correlation (weighted overall score) 0.72-0.93 Cronbach s alpha values for the 8 raters Elwyn, et al., PLoS One. 2009;4(3):e4705. http://www.ncbi.nlm.nih.gov/pubmed/19259269

IPDASi Criteria IPDASi version IPDASi v3 IPDASi SF # of items 47 19 Assessors/Raters Cardiff: MA-D, MS, NJ, SS; North America: SK, ED, AS, MP. Cardiff: MA-D, MS, NJ, SS; North America: SK, ED, AS, MP. # of DSTs evaluated 30 30 Dimensions Information 8 4 Probabilities 8 3 Values 4 1 Decision Guidance 2 - Development 6 3 Evidence 5 2 Disclosure 2 1 Plain Language 1 - Evaluation 2 2 Test 9 3 Elwyn, et al., PLoS One. 2009;4(3):e4705. http://www.ncbi.nlm.nih.gov/pubmed/19259269

Elwyn, et al., PLoS One. 2009;4(3):e4705. http://www.ncbi.nlm.nih.gov/pubmed/19259269

IPDAS Phases 2003-2006 IPDAS Checklist 2006-2009 IPDASi Instrument 2009-2013 IPDAS Minimal Standards 2011-2013 Updated evidence underlying the IPDAS Checklist 2014-2017 Reporting guidelines

Process: 1. Delphi consensus 2-round voting on: If the criterion was not present or of low quality, there would be a risk of harmful bias and a potential negative impact on patients decision making (127 with some patient decision aid experience voted from 16 countries) 2. Expert committee considered results from - Vote on risk of harmful bias - Qualitative comments of voters - Original IPDAS rating - IPDASi trained raters comments on feasibility Joseph-Williams, et al., MDM. 2014; https://www.ncbi.nlm.nih.gov/pubmed/23963501

IPDAS v4.0 Items across the 3 Categories Dimensions # of Criteria / Category Qualifying Certification Quality Information 5 1 2 Probabilities 6 Values 1 1 Guidance 2 Development 6 Evidence 4 2 Disclosure 1 1 Plain Language 1 Evaluation 2 Test 4 5 Totals 6 10 28 Joseph-Williams, et al., MDM. 2013 Aug 20. https://www.ncbi.nlm.nih.gov/pubmed/23963501

Summary of qualifying criteria 1. describes the health condition or problem 2. explicitly states the decision that needs to be considered 3. describes the options available 4. describes the positive features 5. describes the negative features 6. describes what it is like to experience the consequences Joseph-Williams, et al., MDM. 2013 Aug 20. https://www.ncbi.nlm.nih.gov/pubmed/23963501

Summary of certifying criteria 1. equal detail for negative and positive features of options 2. citations to the evidence 3. production or publication date 4. update policy 5. information about uncertainty around probabilities 6. funding source used for development For screening decision aids 7. describes what the test is designed to measure 8. next steps after positive test result 9. next steps after negative test result 10. consequences of detecting a benign condition Joseph-Williams, et al., MDM. 2013 Aug 20. https://www.ncbi.nlm.nih.gov/pubmed/23963501

IPDAS Phases 2003-2006 IPDAS Checklist 2006-2009 IPDASi Instrument 2009-2013 IPDAS Minimal Standards 2011-2013 Updated evidence underlying the IPDAS Checklist 2014-2017 Reporting guidelines

2012 Update of the IPDAS Collaboration Background Document

2013 Peer-reviewed Publications for IPDAS Collaboration s Quality Dimensions BMC Medical Informatics and Decision Making 2013, 13(Suppl 2). http://www.biomedcentral.com/bmcmedinformdecismak/supplements/13/s2

Summary of 2013 findings More emphasis on: 1. Quality of the evidence For example, use GRADE 2. Disclosures of actual/potential conflict of interest For example, report that no funding to develop or exclusively distribute has been received from commercial for profit entities that sell options in the PtDA

IPDAS Phases 2003-2006 IPDAS Checklist 2006-2009 IPDASi Instrument 2009-2013 IPDAS Minimal Standards 2011-2013 Updated evidence underlying the IPDAS Checklist 2014-2017 Reporting guidelines

IPDAS Uptake & Impact Citations 994 IPDAS Checklist (Elwyn et al 2006) 241 IPDASi (Elwyn et al 2009) 76 IPDAS Minimal Standards (Joseph-Williams et al 2014) 78 Ten Years of IPDAS Collaboration (Volk et al 2013) (Google Scholar August 10, 2017)

A to Z Decision Aid Inventory uses IPDAS http://decisionaid.ohri.ca Note: The OHRI Patient Decision Aids site is not part of IPDAS. It uses the IPDAS criteria to rate aids listed in the Inventory.

Proposed certification criteria are based on IPDAS

Norway is using IPDAS In December 2016, the Norwegian Health Directorate used the IPDAS standards to establish a set of quality criteria for approving patients decision aids prior to being added to the Norwegian health platform. All Norwegians and health care professionals have access to resources on this health platform. https://helsedirektoratet.no/nasjonale-kvalitetskrav-tilsamvalgsverktoy-som-skal-publiseres-pa-helsenorgeno

ipdas.ohri.ca has >16,000 visitors per year generating 60,000 page views and 42,000 downloads Website requests: - Translate IPDAS - Advice on: - developing PtDAs - reviewing PtDAs - Certifying PtDAs - Pediatric-specific criteria

For discussion What suggestions do you have for new IPDAS initiatives? How might you want to be involved?