Our toolkit offers practical advice for guideline developers and others on involving patients and the public in guideline activities. We bring together international experiences and best practice examples of successful patient and public involvement (PPI). Our advice is based on published literature as well as the authors’ experiences of PPI activities and methods. The toolkit:
• describes different methods for PPI in developing and using guidelines, the pros and cons of these methods and the circumstances where they are most likely to be useful
• provides best practice examples
• describes the resources needed, the pitfalls to avoid, and the main barriers to address to achieve effective PPI in guideline development and implementation
The toolkit chapters are organised into three general involvement strategies: consultation, participation, and communication. For a more detailed explanation, see our earlier introduction on how to choose an effective involvement strategy.
Each chapter has a list of key messages, top tips and, in some cases, further resources.
This is a ‘living resource’ with updates and additions as experience, literature and methodology continue to evolve. You may need to adapt the methods described in the toolkit to suit your own environment, because social, political, and cultural contexts will affect the success and difficulties of PPI.
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Who do we mean by patients and public?
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 and social care services, or whose life is affected directly or indirectly by a guideline (citizens, taxpayers, the public).
“I became involved as a public partner with GIN PUBLIC due to my interest in patient and public involvement in patient centred care. This diverse multinational group has persevered with tenacity to co-produce this toolkit which should be an invaluable resource for guideline developers all over the world.”
Kenneth McLean, Public Partner
This digital toolkit is also available in pdf format.
Consultation
Participation
Communication
Beyond guidelines