Patient involvement in guidelines is poor five years after institute of medicine standards: review of guideline methodologies

Abstract

Plain English summaryThe 2011 standards for trustworthy development of healthcare guidelines published by the United States-based Institute of Medicine recommend that guideline developers involve patients and public representatives in the development process. The standards recommend that (1) patients and the public be actively involved as members on guideline development panels and (2) guideline developers seek patient and public input during review of the draft guideline. In this study, researchers reviewed the patient and public involvement strategies of guideline developers in the United States by looking at websites and guideline development practices. Of 101 organizations reviewed, only 8% require patient and public involvement on guideline development groups; 15% sometimes require it or describe it as optional. Only 24% of guideline developers always post draft guidelines for public comment. Thirteen percent of guideline developers ask patients or patient organizations to review draft guidelines at least some of the time. Only 20% of guideline developers create patient-targeted guideline products (e.g. patient summaries of guidelines). These low numbers show that there is a substantial gap between standards for patient and public involvement in guideline development and what is actually happening. This is a missed opportunity, as patient and public contributions to guideline development include assessing guideline priorities, introducing new topics, identifying important populations and outcomes, suggesting whether findings are meaningful, prompting holistic approaches to care, assessing how recommendations interact with patient values, and writing plain-language guideline versions. Guideline developers must commit to prioritizing patient and public involvement as one part of trustworthy guideline development.AbstractBackgroundThe United States-based Institute of Medicine 2011 standards for trustworthy clinical practice guideline development recommended patient and public involvement in guideline development via participation by patients and public representatives on guideline development groups and via external review and public comment strategies. Guideline developer compliance with these standards has not been assessed. This study aimed to identify the frequency with which United States guideline developers are employing participation, consultation, and communication patient and public involvement strategies.MethodsTwo reviewers independently extracted current patient and public involvement strategies of independent guideline developers, either (1) an organizational member of the Guidelines-International-Network North America and/or (2) having ≥2 guidelines in the National Guideline Clearinghouse between March 2011 and November 2015. Publicly available information was extracted from guideline developers’ websites, methodology manuals, and guidelines between November 2015 and December 2016. Disagreements were resolved by discussion.ResultsOf 101 organizations meeting inclusion criteria, only 8% require pa...

Protocol for the development of guidance for stakeholder engagement in health and healthcare guideline development and implementation

“…There are many stakeholder groups equally affected by recommendations in guidelines-e.g., patients, consumers, providers, general public, researchers, and policymakers. However, engagement with patients/public/ community stakeholder groups dominates the literature, and guidance of the engagement with patient/public stakeholders is the most prominent [21][22][23]. In a review of guideline methodologies conducted by Armstrong and Bloom for example, patients/public stakeholders were consulted by 101 different guideline developers [21].…”

“…However, engagement with patients/public/ community stakeholder groups dominates the literature, and guidance of the engagement with patient/public stakeholders is the most prominent [21][22][23]. In a review of guideline methodologies conducted by Armstrong and Bloom for example, patients/public stakeholders were consulted by 101 different guideline developers [21]. Many guideline groups that have sought to involve stakeholders have utilized limited numbers of participants or utilized slow and labor-intensive processes (e.g., time and resources needed to administer, collate, and respond to over 200 stakeholder views and comments) [12].…”

Contemporary consumer perspectives on prostate cancer survivorship: Fifty voices

“…In contrast to co‐production, clinical practice guidelines are most often built upon the highest‐level scientific evidence available, preferably systematic reviews and meta‐analyses and randomised controlled trials, and incorporating expert consensus opinion. Problematically, patient or consumer involvement in such guidelines tends to be poor, with most organisations involved in guidelines production not requiring consumer input, and as few as one in five developing consumer versions . In the case of existing prostate cancer survivorship guidelines, it is not clearly stated what input was obtained from survivors, and indeed such consultation appears to have been absent.…”

Patient and caregiver involvement in the formulation of guideline questions: findings from the European Academy of Neurology guideline on palliative care of people with severe multiple sclerosis

“…This led to the formulation of 10 PICO questions for this guideline. Our pre‐planned approach to engage patients and caregivers from the very beginning of guideline development is in line with current recommendations . This was demanding but attainable, also at an international level.…”

“…Offering the best care possible to the highest number of patients and reducing variations in service delivery are the key issues for most healthcare systems and the main reason for producing clinical practice guidelines . Involvement of health service users in clinical guideline production has long been advocated but insufficiently undertaken, and the best ways to engage users remain unclear . Here, the experience of an international patient and caregiver involvement is reported, which was time and resource intensive and employed a mixed method.…”