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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
 

Author: Antoine Boivin*
*Corresponding author: Antoine.Boivin@usherbrooke.ca


One question we often get asked at G-I-N PUBLIC is ‘how can we incorporate the patient’s perspective and
what is the best method to involve patients and the public in our guidelines?’ to which we invariably
respond, ‘what do you really hope to achieve?’ There are in fact many legitimate reasons why guideline
developers want to involve patients and the public, and these reasons can be different from those that
would motivate patients and the public to engage in this process. The best method is the one that can be
used most effectively to achieve those goals, so there is definitely not a one-size-fits-all approach.
Furthermore, each method requires time and resources to be implemented successfully, and it is therefore
critical to have a clear focus right from the start. Last but not least, although patient and public involvement
is widely perceived as a positive component of guideline development, different stakeholders often hold
competing and potentially incompatible views over what they consider successful involvement, which may
create tensions if these differences are not negotiated early on.1
The goal of this chapter is to get you started in developing your involvement plan by:

  • Introducing the main involvement strategies discussed in the toolkit
  • Helping you identify the strategy that best fits your needs

Three involvement strategies: consultation, participation and communication

Guideline organisations use a number of different methods to involve patients and the public.2,3 It is helpful to distinguish three general involvement strategies, based on the flow of information between your organisation and the public:4

Consultation strategies involve the collection of information from patients and the public. This
can include methods such as surveys, focus groups, individual interviews, online consultation,
the use of primary research on patients’ needs and expectations, or the use of a systematic
review of studies on patients’ and the public’s perspective.

Participation involves the exchange of information between guideline developers and the
public. This can be done through participation of patient and public representatives on guideline
development groups and other methods.5

Communication strategies involve the communication of information to patients and the public
to support their individual health care decisions and choices. This can include the production of
plain language versions of clinical practice guidelines or the development of patient decision aids
or education material.

Choosing the right strategy

Each involvement strategy has its specific strengths and weaknesses and may be more appropriate to achieve certain goals:

  • Consultation strategies are especially useful to gather the views of a large number of individuals regarding their needs, experience, and expectations. Consultation methods are often used in research and add to the evidence base being considered to inform the process of guideline development. Consultation can help assess the public acceptability of draft guideline recommendations and identify topics that appear most important for the public, and are therefore useful in early stages of the guideline development process. A drawback of using consultation strategies only is that it tends to seek out individual viewpoints, presenting an average of ‘the need’ of patients.
  • Participation methods are useful to foster deliberation and mutual learning between participants with different expertise.6 Participation as a member of the guideline development group has the advantage of enabling patients or public members to be present and actively participate in deliberation, which can foster mutual influence between patients and professionals, fostering the development of a collective perspective on guideline development.
    As such, participation methods are usually put in place to agree on common group decisions over guideline content and can be useful to support compromise or consensus between people with different perspectives. When used alone, a drawback of the participation method is that it often allows the involvement of a small number of people and may miss the perspective of vulnerable groups who may feel threatened to participate in meetings with health professionals. As discussed in Chapter 2 of the toolkit a critical issue for successful participation is to support participants’ legitimacy as patient and public members, and their ability to contribute credible knowledge and experience relevant to guideline development.
  • Communication strategies are most useful in the dissemination and implementation stage of guideline production. For strong ‘black and white’ guideline recommendations—where a single best course of action is clear—communication methods can increase the public’s knowledge and awareness of recommended interventions in order to influence patients’ health behaviours and increase uptake. In cases of ‘grey zone’ decisions—when more than one alternative is acceptable—patient decision aids can help expand the range of options available to patients and assist them in weighing the pros and cons of different choices. 7, 8

 

Finally, it is common to combine different involvement strategies to build more comprehensive patient and
public involvement interventions. For example, combining direct patient participation can be complemented
with wider patient consultation through focus groups or surveys, which can allow patients to broaden their
perspective and experience base, and increase their credibility and legitimacy as guideline development
group members. 9 Furthermore, combining communication methods (e.g. development of patient
information material) with participation methods (e.g. participation of patient representatives in the
development of this information material) can help ensure the relevance and accuracy of the information
produced.10 Box 1 provides an example of a structured patient involvement intervention combining
consultation, participation and communication strategies used for health care improvement.

Box 1: Exampel of a mixed patient involvement intervention in guideline implementation

The effect of a mixed patient involvement intervention combining consultation, participation, and
communication components has been tested in a cluster randomised trial and was found to be effective in
increasing agreement between patients’ and professionals’ priorities for clinical care improvement, based on
a list of measurable quality indicators derived from clinical practice guidelines.

Recruitment: Chronic disease patients were recruited through local patient organisations and professionals,
using structured ‘job descriptions’. A list of potential candidates was reviewed by the team, and a group of
15 patients were selected based on pre-defined criteria to ensure a balanced representation in terms of age,
gender, disease status, and socioeconomic status.

Preparation: These patients were invited to a one-day preparation meeting to discuss their personal
experiences in relation with chronic disease services, which helped broaden their perspective and
understanding of patients from their community.  

Consultation: At the end of this preparation meeting, all patients voted on their priorities for clinical care
improvement for their community.
Participation: Four patients who participated in the preparation meeting agreed to participate in a 2-day
deliberation meeting together with health professionals from their community. This meeting allowed
patients and professionals to deliberate among themselves and agree on common priorities for
improvement. All participants also received feedback about the consultation done with the broader group of
15 patients.  

Communication: The quality indicators selected as priorities for health care improvement were implemented
locally and its results were communicated to all patients who participated in the prioritisation, as well as to
lay board members of the local health authority.
Although this patient involvement strategy was used locally for guideline implementation, its format could
easily be applied to guideline development at a larger scale. Details of the intervention have been published
elsewhere. 11

In summary

Guideline organisations have experimented with a vast number of different methods to involve patients and
the public. As summarised in Table 1, these involvement methods can usefully be grouped in three basic
strategies: consultation from the public to inform the guideline development process, participation of
patients and the public in deliberation with other guidelines developers, and communication of guideline
content and other health information to patients and the public. Each strategy has its strengths and
limitations and their use must be tailored to specific contexts and goals. Effective involvement starts with
finding the right method, but is also about doing it right. Following chapters of the toolkit therefore provide
best practice advice on how to implement these methods successfully within your organisation.

Table 1: Methods available to involve patients and the public in guidelines
Involvement strategy Goals and strengths Example of methods used by guideline organisations Toolkit chapters
Consultation (information is collected from patients and the public)
  • Collect information from a large group of people
  • Possible to collect data from a variety of perspectives and from groups that are harder to involve in participation methods
  • Open (online) consultation on guideline scope and topic
  • Comments on draft guideline
  • Focus groups, individual interviews, or surveys of patients’ experience of care
  • Literature review of existing qualitative and quantitative research on patients’ needs and expectations
 Chapter 1
Participation (information is exchanged between the public and other guideline developers)
  • Foster mutual learning and agreement between the public and other experts
  • Facilitate compromise and consensus on collective decisions about guideline recommendations, content, and process
  • Patient or public participation in guideline development group to foster deliberation with other guideline developers
 Chapter 2, 3
Communication (information is communicated to patients and the public)
  • Inform patients and the public about professional standards
  • Support individual health care decisions and choices among different health options
  • Publish patient version of guideline and patient education material
  • Production of patient decision aids
 Chapter 4, 5, 6