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  • Norsk tittel - G-I-N Public Toolkit: Patient and Public Involvement in Guidelines.
  • Engelsk tittel -
  • Versjon - 2
  • Status -
  • IS-nr -
  • ISBN -
  • DOI -
  • Revisjonsdato - 01.09.2015
  • Neste revisjon -
  • Publikasjonsdato - 01.08.2012
  • Utløpsdato -
  • Utgiver(e) - G-I-N PUBLIC Steering Committee
  • Redaktør -
  • Publikasjonstype - Veiledere
 

G-I-N PUBLIC is an international working group of researchers, health professionals and patient/public
representatives that supports patient and public involvement in clinical guideline activity around the world.
G-I-N PUBLIC was established in 2007, as one of seven working groups of the Guidelines International
Network (G-I-N). We are proud to present the ‘G-I-N PUBLIC Toolkit: Patient and Public Involvement in
Guidelines’. The toolkit is the result of a series of consultation activities held by G-I-N PUBLIC at international
conferences of the Guidelines International Network since 2008. These identified that guideline developers
have a need for practical advice on developing effective patient and public involvement programs,1
clarified needs and expectations regarding such advice2 and explored common barriers and practical solutions for
effective patient and public involvement in guidelines.3 The knowledge generated by these activities, the
work and experience of G-I-N PUBLIC members4-7 and literature on the topic formed the basis for developing
the toolkit.

Why involve patients and the public in guideline development, implementation and use?

Guideline developers are increasingly urged to include the perspectives of patients and the public when
developing, implementing and using evidence-based health advice. Patient and public involvement (PPI) is
advocated by quality standards for guideline development,8-10 editorials in medical journals11-13 and research
articles.5-7, 14-20 Various rationales for PPI have been put forward, differing in the contributions, roles and benefits that engagement with the public will bring. We can distinguish several models that advocate for patient and
public involvement in health care in the literature.16, 21-25 First, the ‘consumerist’ model draws on consumers’
rights and emphasises active and empowered consumers to ensure free and well-informed choice in
personalised health care. Second, the ‘democratic’ model draws on the social rights of citizens and
taxpayers, insisting public engagement is essential to make health care policy democratic, accountable and
in line with public values and interests. Third, the model of ‘expert patient’ emphasises patients’ experiential
knowledge (of their own body, illness, life and trajectory through the health care system) can contribute to
improvements in the quality of health care. All three models are relevant to PPI in guideline development, as
guidelines may be used for decision-making in the care of individual patients, in the design of health care
policies and in quality improvement initiatives. PPI in guideline development thus may aim for more patientcentred
health care provision, more democratic health care policy-making or quality improvement of care
and policy. Being aware of the different rationales for PPI can be helpful to manage divergent expectations
that PPI participants may hold.

That being said, this toolkit is not conceived to define, prioritise or evaluate the relative merit of various PPI
models. It provides practical advice for the involvement of patients and the public for a variety of reasons, be
it well-informed choice, accountability, equality, quality of care or improved implementation. By improving
the process of PPI we hope to avoid the tokenistic PPI approach of simply ‘ticking the box’ without ever
affecting the participant, the process or the end-product.

Terminology

For the sake of clarity, we consistently refer to ‘patient and public involvement’ (PPI) throughout the toolkit.
By choosing this term we purposefully aim to be inclusive. 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). The term ‘involvement’ may refer to: consultation (gathering information from patients/public through literature, surveys or qualitative research); participation (two-way information exchange between patients/the public and other experts); or communication (tailoring information to patients/the public, for example, patient versions of guidelines or decision aids). Moreover, patients and the public may be involved at any stage of the guideline development and implementation process, including their use in clinical care. Guidelines are systematically developed statements to assist practitioner and patient decisions about appropriate health care for specific clinical circumstances.26 We refer to ‘clinical practice guideline’ (CPG), as it is the most commonly used term and well-known type of evidence-based health advice. We do not exclude guidelines that are used outside clinical practice, for example, by policy makers, or for providing lifestyle advice outside the clinic. We also refer to evidence-based guidelines, as we consider guidelines within the domain of quality improvement tools such as systematic literature reviews, health technology assessments, patient decision aids and quality indicators.

Toolkit objectives

Guideline developers interested in establishing, expanding or improving patient and public involvement
activities report a lack of methodological support on how best to do this.1 This toolkit aims to remedy this
gap by providing practical advice based on published literature as well as the authors’ experiences with PPI
activities and methods. Its targeted audience is guideline developers and those responsible for the
dissemination, implementation and use of guidelines. The toolkit’s chapters:

  1. Describe different methods for patient and public involvement in guideline development and use; the pros and cons of these methods; and the circumstances where they are most likely to be useful
  2. Provide best practice examples of patient and public involvement methods
  3. Describe the resources needed, the pitfalls to avoid, and the main barriers to address in order to support effective patient and public involvement in guideline development and implementation

The toolkit is designed to be a ‘living document’. This means that the methods described in the toolkit may
need to be adapted and revised to a specific environment, because social, political, and cultural contexts will
affect the success and difficulties of PPI. It also means that the toolkit will be expanded with additional
chapters (e.g. literature review of patient views, defining the scope of guidelines). As experience, literature
and methodology continue to evolve (especially of the evaluation of PPI27), existing chapters can be updated,
and new topics can be added.

Acknowledgements

The publication of this toolkit has been made possible by the dedicated work of many people around the
world. We would especially like to thank all contributing authors for their valuable time and expertise.
Completion of the toolkit would not have been possible were it not for the incredibly hard work of Carrie M.
Davino-Ramaya as toolkit coordinator and editor; Alissa Grice, layout and design; and Amy Fenton who
provided coordination support. Special thanks to G-I-N PUBLIC Chairs Loes Knaapen and Corinna Schaefer for
keeping this large collaborative voluntary project on track. Current G-I-N PUBLIC Steering Committee
members offered guidance and comments on draft chapters. Former members Nancy Huang and Judi Strid
contributed to the toolkit proposal. Antoine Boivin, founder of G-I-N PUBLIC, provided vision and leadership
throughout the process. We also want to thank G-I-N for financial support, and G-I-N’s former Executive
Officer Magali Remy-Stockinger for her help in preparing the toolkit’s launch at the G-I-N Conference 2012 in
Berlin.


August 2012

G-I-N PUBLIC Steering Committee

  • Loes Knaapen
  • Corinna Schaefer
  • Antoine Boivin
  • Sarah Chalmers
  • Carrie M. Davino-Ramaya
  • Javier Gracia
  • Rich Rosenfeld
  • Anne Hilde Røsvik
  • Carol Sakala
  • Helen Tyrrell
  • Madeleine Wang
  • Trudy van der Weijden