Existing evidence summarization methods cannot guarantee trustworthy patient decision aids

Dannenberg, Michelle D; Durand, Marie-Anne; Montori, Víctor M.; Reilly, Clifford A.; Elwyn, Glyn

doi:10.1016/j.jclinepi.2018.06.003

Cited by 7 publications

(16 citation statements)

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“…Standardization of evidence synthesis methods among decision aid developers is limited. 27 As shown in Table 2, most decision aids do not currently report any of the processes used to locate and decide on the inclusion of evidence in the aid. There are efforts underway, in the form of a modified Delphi survey and consensus approach, to develop guidance for decision aid developers about approaches to finding, deciding on inclusion, and summarizing the evidence.…”

Section: Emerging Issues and Future Research Areasmentioning

confidence: 99%

Basing Information on Comprehensive, Critically Appraised, and Up-to-Date Syntheses of the Scientific Evidence: An Update from the International Patient Decision Aid Standards

et al. 2021

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Background Patients and clinicians expect the information in patient decision aids to be based on the best available research evidence. The objectives of this International Patient Decision Aid Standards (IPDAS) review were to 1) check the currency of, and where needed, update evidence for the domain of “basing the information in decision aids on comprehensive, critically appraised, and up-to-date syntheses of the evidence”; 2) analyze the evidence characteristics of decision aids; and 3) propose updates to relevant IPDAS criteria. Methods We searched MEDLINE and PubMed to inform updates of this domain’s definitions, justifications, and components. We also searched 5 sources to identify all publicly available decision aids ( N = 471). Two assessors independently extracted each aid’s evidence characteristics. Results Minor updates to the definitions and theoretical justifications of this IPDAS domain are provided and changes to relevant IPDAS criteria proposed. Nearly all aids (97%) provided a year of creation/update, but most (81%) did not report an explicit update or expiration policy. No scientific references were cited in 33% of aids. Of the 314 that cited at least 1 reference, 39% cited at least 1 guideline, 44% cited at least 1 systematic review, and 23% cited at least 1 randomized trial. In 35%, it was unclear what statement in the aid the citations referred to. Only 14% reported any of the processes used to find and decide on evidence inclusion. Only 14% reported the evidence quality. Many emerging issues and future research areas were identified. Conclusions Although many emerging issues need to be addressed, this IPDAS domain is validated and criteria refined. High-quality patient decision aids should be based on comprehensive and up-to-date syntheses of critically appraised evidence.

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Section: Emerging Issues and Future Research Areasmentioning

confidence: 99%

Basing Information on Comprehensive, Critically Appraised, and Up-to-Date Syntheses of the Scientific Evidence: An Update from the International Patient Decision Aid Standards

et al. 2021

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“…A recent international survey of 15 PDA developers confirms that they do not have an agreed‐upon, standardized process to select and summarize evidence 8 . They did not always document the evidence selection and summarization process 8 . Most organizations reported using existing systematic reviews and clinical practice guidelines to select and summarize information for PDAs 8 .…”

Section: Introductionmentioning

confidence: 99%

“…Less than half reported using a standard, documented approach to guide the evidence selection and summarization 8 . When the approach was documented, the documents offered varying levels of detail 8 . Common evidence summarization steps identified were as follows: tool‐relevant question formation, search strategies, evidence appraisals and updating policies 8 .…”

Section: Introductionmentioning

confidence: 99%

“… 8 When the approach was documented, the documents offered varying levels of detail. 8 Common evidence summarization steps identified were as follows: tool‐relevant question formation, search strategies, evidence appraisals and updating policies. 8 There was no standardized process across organizations to summarize evidence for PDAs.…”

Section: Introductionmentioning

confidence: 99%

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Processes for evidence summarization for patient decision aids: A Delphi consensus study

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Saunders

Dannenberg

et al. 2021

Health Expectations

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Background Patient decision aids (PDAs) should provide evidence‐based information so patients can make informed decisions. Yet, PDA developers do not have an agreed‐upon process to select, synthesize and present evidence in PDAs. Objective To reach the consensus on an evidence summarization process for PDAs. Design A two‐round modified Delphi survey. Setting and participants A group of international experts in PDA development invited developers, scientific networks, patient groups and listservs to complete Delphi surveys. Data collection We emailed participants the study description and a link to the online survey. Participants were asked to rate each potential criterion (omit, possible, desirable, essential) and provide qualitative feedback. Analysis Criteria in each round were retained if rated by >80% of participants as desirable or essential. If two or more participants suggested rewording, reordering or merging, the steering group considered the suggestion. Results Following two Delphi survey rounds, the evidence summarization process included defining the decision, reporting the processes and policies of the evidence summarization process, assembling the editorial team and managing (collect, manage, report) their conflicts of interest, conducting a systematic search, selecting and appraising the evidence, presenting the harms and benefits in plain language, and describing the method of seeking external review and the plan for updating the evidence (search, selection and appraisal of new evidence). Conclusion A multidisciplinary stakeholder group reached consensus on an evidence summarization process to guide the creation of high‐quality PDAs. Patient contribution A patient partner was part of the steering group and involved in the development of the Delphi survey.

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“…A recent international cross-sectional survey of 15 PDA developers confirms that they do not have an agreed-upon, standardised process to select and summarise evidence. They also do not always document the evidence selection and summarisation process 3. Most organisations reported using existing systematic reviews and clinical practice guidelines to select and summarise information for PDAs.…”

Section: Introductionmentioning

confidence: 99%

Modified Delphi survey for the evidence summarisation of patient decision aids: Study protocol

et al. 2019

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IntroductionInformation included in a patient decision aid (PDA) can significantly influence patients’ decisions and is, therefore, expected to be evidence-based and rigorously selected and summarised. PDA developers have not yet agreed on a standardised process for the selection and summarisation of the supporting evidence. We intend to generate consensus on a process (and related steps and criteria) for selecting and summarising evidence for PDAs using a modified Delphi survey.Methods and analysisWe will develop an evidence summarisation process specific to PDA development by using a consensus-based Delphi approach, surveying international experts and stakeholders with two to three rounds. To increase generalisability and acceptability, we will distribute the survey to the following stakeholder groups: PDA developers, researchers with expertise in shared decision making, PDA development and evidence summarisation, members of the International Patient Decision Aids Standards (IPDAS) collaboration, policy makers with expertise in PDA certification and patient stakeholder groups. For each criterion, if at least 80% of survey participants rank the criterion as most important/least important, we will consider that consensus has been achieved.Ethics and disseminationIt is critical for PDAs to have accurate and trustworthy evidence-based information about the risks and benefits of health treatments and tests, as these decision aids help patients make important choices. We want to generate consensus on an approach for selecting and summarising the evidence included in PDAs, which can be widely implemented by PDA developers. Dartmouth College’s Committee for the Protection of Human Subjects approved this protocol. We will publish our results in a peer reviewed journal.

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Existing evidence summarization methods cannot guarantee trustworthy patient decision aids

Cited by 7 publications

References 11 publications

Basing Information on Comprehensive, Critically Appraised, and Up-to-Date Syntheses of the Scientific Evidence: An Update from the International Patient Decision Aid Standards

Basing Information on Comprehensive, Critically Appraised, and Up-to-Date Syntheses of the Scientific Evidence: An Update from the International Patient Decision Aid Standards

Processes for evidence summarization for patient decision aids: A Delphi consensus study

Modified Delphi survey for the evidence summarisation of patient decision aids: Study protocol

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