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Short survey on using and updating the G-I-N Public Toolkit: patient and public involvement in guidelines

Thank you to all those who responded to G-I-N Public’s recent survey on the use of our Toolkit for involving patients and the public in guidelines work. 57 people from a range of roles completed the survey. Most respondents were aware of the Toolkit and gave positive feedback on its usefulness. We also received helpful suggestions on areas for development and update, and ideas for wider dissemination of the Toolkit. 

The G-I-N Public working group produced the first version of the Toolkit in 2012, then expanded and updated it in 2015. To inform our plans for updating the Toolkit in 2019, we surveyed G-I-N members to seek feedback on its use and areas for development. The survey was open for 2 weeks, with a reminder sent after 1 week.

The 57 respondents represented a range of roles: academics, guideline developers, health care and public health professionals, patients/consumers and others, with the majority being guideline developers.  Most respondents (63%) were aware of the Toolkit, 26% had used it and 28% had read it but not used it. The 3 most widely used chapters were on the topics of public and targeted consultation, recruiting and supporting patients and the public in guideline development, and patient versions of guidelines.

Suggested areas for development included additional content, updating examples and citations, and making the Toolkit more accessible in terms of format and presentation, for example, producing a short version, including checklists, using a digital format.

The survey reinforced other feedback given to G-I-N Public on the usefulness of the Toolkit, alongside the need for it to evolve and be updated. We will use the feedback from this survey to produce an updated and more user-friendly version, and to increase awareness of the Toolkit. If you would like to contribute to this work, please contact the G-I-N Public working group chair, Corinna Schaefer - Schaefer@azq.de,  or vice-chairs, Jane Cowl – jane.cowl@nice.org.uk and Karen Graham - karen.graham2@nhs.net

 

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Board Reports

 

G-I-N PUBLIC: UPDATED TOOLKIT "PATIENT AND PUBLIC INVOLVEMENT IN GUIDELINES"

At the 12th G-I-N Conference in Amsterdam, the G-I-N PUBLIC working group presented it's updated "Toolkit" on Patient and Public Involvement in Guidelines. The toolkit is designed to support guideline developers by providing international best practice examples of successful consumer involvement.

After the introduction on how to choose an effective involvement strategy, the toolkit currently comprises ten chapters that provide advice on basic issues of patient and public involvement, four of which have been written for the update, covering topics like strategies on how to systematically include qualitative evidence about patient preferences, how to involve vulnerable patient groups or the role of web based technologies. Furthermore, the HTAi interest group for patient involvement Community share their resources and forms to facilitate stakeholder involvement. Read more: http://www.g-i-n.net/document-store/working-groups-documents/g-i-n-public/toolkit/flyer-2015

Since its first launch, the toolkit has been discussed with guideline developers, consumers and patient organisations in workshops, webinars and at conferences. The G-I-N PUBLIC working group has learned from these fruitful discussions that it met a need by sharing experience rather that to prescribe what to do. However, these discussions have also revealed further topics that could be of interest for guideline developers or other toolkit users. The updated toolkit addresses these topics.  It will continue to be a living document and will be continuously updated.

The toolkit is freely available on the G-i-N website: http://www.g-i-n.net/working-groups/gin-public/toolkit for any further question, please contact us! The G-i-N PUBLIC working group c/o office@ g-i-n.net<http://g-i-n.net>.

 

Corinna Schaefer

G-I-N Public Chair

Page last updated: Apr 16, 2019
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