GIN Public Toolkit: Patient and Public Involvement in Guidelines

GIN Public Toolkit: Patient and Public Involvement in Guidelines

Over the last few months there has been some exciting innovative work going on within our GIN Public working group who have been developing an updated GIN Public Toolkit: Patient and Public Involvement in Guidelines.

The “Toolkit” assembles international experiences and best practice examples of successful patient involvement and aims at supporting guideline developers who consider involving patients in guideline development or dissemination.

We are delighted to now be able to launch the first 4 updated chapters and 1 brand new chapter whch can be found within the Resources section of the website. These newly updated chapters will be converted to a more accessible digital format very soon and will be available on the new GIN website.

The GIN Public working group produced the first version of the toolkit in 2012, which was then further expanded and updated in 2015. The next update is due to be completed in 2021 and to deliver this the group surveyed GIN members to seek feedback on its use and areas for development.

The survey reinforced other feedback given to GIN Public on the usefulness of the toolkit, alongside the need for it to evolve and be updated. Feedback is being used to assist in the production of an updated and more user-friendly version, as well as increase awareness.  It is the group’s intention to continue to seek feedback from users to help with future updates.

Some of the improved features include new key messages within each chapter, top tips and, in some cases, additional resources and examples.

The newly launched chapters include:

  • Updates of the 3 most widely accessed chapters:
    • How to recruit and support patients and the public and overcome barriers to their involvement in guideline development.
    • How to conduct public and targeted consultation
    • How to develop information from guidelines for patients and the public
  • We are also delighted to launch 2 chapters authored by colleagues in partner international collaborations including Cochrane, which provide valuable advice and tools that can be adapted for work on Guidelines:
    • 1 NEW chapter on patient and public involvement in systematic reviews, authored by Cochrane Consumers
    • 1 updated chapter on tools to support patient involvement in health technology assessment by the HTAi Patient and Citizen Involvement Group

Lead authors, Chair and Vice Chair of GIN Public, Jane Cowl of NICE and Karen Graham of SIGN have been instrumental in delivering and coordinating the effort to get the document to this stage. This includes working with a professional editor.

The project has also been fortunate to have the valued input from a member of the public who spent time on the review panel.  Kenneth McLean commented: “I became involved as a public partner with GIN PUBLIC due to my interest in patient and public involvement in patient centred care.

During this pandemic period of extreme pressure on all working in the healthcare environment, this diverse multinational group has persevered with tenacity to do the right thing on behalf of the public and patients and the result is an internationally co-produced toolkit which should be an invaluable resource for guideline developers all over the world. I feel very privileged to have been on part of this journey and have learnt so much from colleagues from all over the world.”

Jane Cowl & Karen Graham
On behalf of GIN Public

* Who do we mean by patients and public?

Patients and the public can refer to people with personal experience of a disease, condition or service (patients, consumers, or users); their carers or family members; and people representing a collective group of patients or carers (representatives or advocates). It may also refer to members of society interested in health care services, or whose life is affected directly or indirectly by a guideline (citizens, taxpayers, the public).