Strategies for disseminating recommendations or guidelines to patients: a systematic review

In total, we identified 47 articles that met the inclusion criteria, 43 through the
SLR and 4 through the hand search. After reading the full text, 21 articles were included
in this review (see Fig. 1). The articles are published between 2002 and 2014 but most of them are published
between 2010 and 2014 (15). Most of the articles are published in 2013 (8 articles).
The articles are mainly about the field of rheumatology, asthma/COPD and diabetes.
The authors are from the Canada (7), Europe (7), USA (5), Russia (1) and Africa (1).

Fig. 1. Flowchart

Most of the 21 papers can be described as opinion papers or papers that describe strategies
that have been used or might be effective. Only a small amount of papers are based
on a RCT or a survey or qualitative study. The 21 papers were assessed for the level
of evidence and were scored level 3 (descriptive studies, such as comparative studies,
correlation studies or case-control studies) or 4 (expert committee reports or opinions;
Table 2). Only one study was assessed as having a level of evidence of 2B (controlled study).
Although Cochrane suggests to exclude descriptive papers, editorials or opinion papers,
we have included those papers because of the lack of articles with a level of evidence
of 1 (meta-analysis of randomised controlled trials) or 2 (single randomised controlled
trials). The analysis of the articles showed that, besides information about dissemination
to patients or patient organisations, many articles paid attention to patient involvement
in dissemination. This result section will, therefore, address both themes: information
on dissemination to patients or patient organisations and patient involvement in dissemination.

Table 2. Characteristics of selected papers

Dissemination to patients or patient organisations

Dissemination plan

The search gives insight in three main factors that may make the dissemination of
recommendations towards patients more successful. The first factor concerns the development
of a dissemination plan 21], 22]. An adequate strategy requires, according to Boulet et al. 6] and Allu et al. 21], a dissemination plan that is ideally developed in parallel with the development
of the recommendations; the plan should be made during the project and not at the
end of the project 6], 21]. A dissemination plan is needed to clarify at the start of the project the target
audience, which will subsequently determine the scope, objectives, format, style and
wording of the recommendations as well as the tools for dissemination 22].

Lay version

Producing a lay version of the original recommendations is the second factor that
may improve the dissemination of recommendations 6]. A lay version enables patients to better understand the goals of treatment, the
different treatment options and the benefits and risks of each option. Patients who
have access to lay versions are better equipped to prepare themselves for the consultation
with their health care provider and are expected to become an active partner in their
own treatment 6].

Boulet et al. recommend to take the following aspects into account when developing
a lay version. First, the message should be customised to the target audience. The
information should be made relevant for the target audience, patients in this case.
Furthermore, the information in the recommendations should be consistent, unambiguous
and credible 6]. A successful lay version provides clear, explicit and specific information 6], 23] and some key messages 2]. The information in the lay version has to be readable for patients. A well-known
pitfall is that information is often too difficult for the general public 24], 25] and in particular for less literate persons 25]. Information can be simplified by using less medical and technical terms or by giving
an explanation of the terms 24]. McGuire et al. stress the fact that patients do not speak the same language as health
professionals 24]. Only after a while, they will become more familiar with the language spoken by professionals
24]. Based on a survey among professionals, McGuire et al. further recommend the use
of familiar words of one or two syllables, the use of active voice in the present
tense and the use of short sentences of 15 words or less, and short paragraphs of
ten lines or less 24]. Finally, information about where more in-depth information can be found should be
included in the lay version 6], 23].

For international guidelines, lay versions of guidelines should ideally be translated
into different languages. Based on international recommendations and best practices,
Azevedo and colleagues 26] suggest to follow three steps for the translation and cross-cultural adaptation of
guidelines: forward translation, back translation and patient testing. In the forward
translation step, two professionals/patients (no translators) independently translate
the original version into the target language. The translations are then compared,
and an agreed version is drawn up between the translators and those involved in the
development of the original version. In the back translation step, the text is translated
back into the original language with the support of the developers of the original
version. It is then compared with the original and reviewed to ensure conceptual equivalence.
The last step is the patient test phase. Ten adult patients are given the translated
version and are interviewed about the interpretation and wording of each item. The
results are reviewed, and any changes are integrated into the third and final version
26].

Combining strategies

The third factor that may lead to better dissemination is the simultaneous use of
multiple tools and strategies. The use of different approaches can help to increase
awareness and use among target populations 26].

Lay versions, as described above, are expected to reach individual patients. However,
a study of Snyman suggests that just making a lay version is not enough to achieve
this goal because most printed health messages do not transfer information successfully
to target audiences 25]. The use of passive dissemination strategies, such as a leaflet or brochure, has
proven to be insufficient to educate patients or change daily routine because such
information does not endure in the long term 23]. Snyman’s study shows that strategies to disseminate lay versions need to be accompanied
by the development of other materials. Several papers confirm that dissemination requires
a combination of different, mutually reinforcing strategies (e.g. 6], 21], 26], 27]), for example, the repetition of key messages from different credible sources such
as well-known professionals. Boulet et al. mention, based on their own experiences,
the combination of the following strategies: organising press conferences, providing
lay versions through Public Libraries, developing books to reach children and developing
posters with ‘trigger’ stickers or making a website endorsed by a VIP 6].

Patient organisations can furthermore organise an annual national forum on a disease
at which people share their experiences and take part in training and education programmes.
Patient organisations can also provide telephone and online counselling and literature
and other resources for patients and caregivers 6]. Allu et al. suggest to disseminate recommendations by providing automatic updates
of new information and resources for patients who have signed in, by interactive internet-based
lectures and by developing a variety of learning tools like posters, summaries, handouts,
pocket cards and slide sets for patients 21]. Education to patients should furthermore be pro-active whereby face-to-face and
contact by telephone can be used 28], just as education events for patients 29]. The use of internet and digital tools like websites and apps seems to be promising
and necessary to reach patients 30], 31]. Guidelines should be easily searchable and accessible immediately 30], 31]. Another option is, according to Boulet et al., the development of community ‘champions’:
through train-the-trainer sessions, community leaders are trained to become ‘champions’.
Those champions assist in the dissemination of information to patients 6]. Knowledge brokers can also be used. Knowledge brokers are persons who bridge the
gap between researchers and the end users 32]. Allu et al. stress the importance of patient associations. Patients should be encouraged
to become a member of the association and receive information and other support 21].

When different sources and tools are applied over a longer period, the dissemination
can be described as most adequate because information will last longer when seen and
heard more often 6]. There is less information about the impact of the use of different strategies. The
reviewed publications provide clear descriptions of the used or recommended dissemination
strategies, but it is mostly unknown to what extent these strategies were effective.
We do, however, know that event-based knowledge mobilisation may be effective for
the initial dissemination of guidelines. For sustainable adaptation, more efforts
are needed 29].

The literature also describes a study in which patient outcomes were improved by the
dissemination of guidelines through didactic educational meetings, a printed guideline
and a patient brochure 33], but we do not know which of these elements has resulted in the improvements.

To choose the right dissemination strategies means thus to combine passive and active
strategies. According to Jeong et al., it is thereby necessary to take cultural differences
into account 34] and to make versions bilingual in countries in which people speak different languages
20]. A lack of attention to cultural differences can lead to products or programmes that
do not meet the needs or possibilities of the target audience. One of those issues
is the risk that the programmes do not fit the recipient in terms of their unique
culture. Success in one country does not guarantee success in other countries 34], or even within countries if there are significant cultural differences within countries.
This is confirmed by the GRADE guidelines that emphasise the importance of the context.
Guidelines developed for resource-rich countries are often inapplicable in resource-poor
countries 35]. Here, careful consideration should be given to social and cultural sensitivities
and differences like hierarchal culture, working according to plans or not 34], or the presence of certain professionals (for example specialised nurses) or health
resources 34]. Therefore, the first step in any effort to reach a new public is to thoroughly understand
the culture and cultural diversity of the target audience. Adaptation of the recommendations
to the local situation may be needed 34].

In conclusion, in order to be as successful as possible, dissemination strategies
should be characterised by developing a dissemination plan at an early stage, developing
a lay version and using multiple dissemination strategies to reach the patients. The
overriding principle to make recommendations accessible for patients and to ensure
that they are comprehensible and fit the context is that the dissemination strategy
suits the target audience. It is stressed by several authors that this can best be
achieved by direct involvement of the target audience: patients and their organisations
22]–25], 36]. How patients and their organisations can be involved is described below.

Patient involvement

In developing recommendations

Several authors stress, based on their own experiences and ideas 1], 22]–25] or a qualitative study among professionals 36], the importance of the involvement of patients or patient organisations in the design
and development of recommendations to enhance the dissemination of recommendations
in health care and to local patient organisations. Patients should be involved from
an ethical point of view: involvement is needed to give patients influence on the
recommendations by incorporating their experiential knowledge and perspectives. The
involvement of patients, if done properly, increases the comprehensiveness of the
recommendations because patients use other words and less jargon compared to professionals
and their involvement makes the adaption of the recommendations to the target population
easier because of their ‘patient knowledge’ 22], 23], 37].

An international working group of researchers, health professionals and patient representatives
of the Guidelines International Network (GIN) has developed a toolkit about patient
involvement in guidelines. The GIN supports patient involvement in guideline activities
around the world. The toolkit is the result of a series of consultations, a literature
review and the practice and experience of the GIN members 38].

In developing lay versions

There are different ways that patients or patient organisations can be involved in
making a lay version 1]. EULAR has chosen to involve patients from different countries because of the international
context of the recommendations. They have experienced that the involvement of patients
with different native tongues enhances the likelihood that the lay version can be
easily understood by many patients and that an English lay version can easily be translated
into various languages because typical English phrasings are avoided. The GIN toolkit
suggests that the translation of the English lay version in different languages should
be done by patient organisations, using a heterogeneous group of patients with different
disease status and educational levels 38]. Other authors 39] suggest to use a participatory (action) research (PAR) in order to involve patients
in the development of guidelines/lay versions. Using such a PAR design may, according
to the authors, result in culturally appropriate brochures for patients 39].

In disseminating recommendations

Van Eijk and colleagues state that a successful change of clinical practice in accordance
with the recommendations requires an adequate or even better effective implementation
strategy in which the key stakeholders delivering and receiving care (among others
patients) are involved in the dissemination 40]. National patient organisations should, according to the GIN toolkit, disseminate
the recommendations in their own countries. This can be done by using their own website,
newsletters, brochures, other publications, phone calls, support groups, workshops,
events, seminars, annual conferences, local or regional events, events for professionals
and/or patients, press releases, print-ready ads, fillers or by including the recommendations
in their information packages provided to their members 38]. Personal stories of patients in media can also help to raise awareness of new recommendations
38].

Who should be involved?

The GIN toolkit suggests that patients who have participated in the development of
the recommendations can also actively contribute to the dissemination process 38]. Another suggestion is the establishment of permanent groups, networks or ‘virtual
panels’ of patients 38]. The network members are alerted when new recommendations or patient versions are
published. They can raise awareness by distributing lay versions to health professionals,
patients, patient organisations and members of the public. The network should in this
case include members with different backgrounds.

Conditions for involvement

Patients involved in the dissemination process have specific needs that should be
taken into account. The GIN toolkit suggests (1) informing patients about their role
before participating, (2) clarifying expectations about the specific role of the patients
and the time commitment required, (3) giving a training in advance to prepare patients
for their assigned role and (4) supporting patients during the process 38]. The training could be in technical areas such as how to understand the terminology
or how to take part in the group effectively (e.g. assertiveness) 38]. Supporting patients can be done by providing networking opportunities for individuals
or by providing a buddy 38].

Suggestions to make patient involvement more successful

Three suggestions aimed at creating patient involvement in the development and dissemination
of recommendations are described in the literature. The first suggestion is the use
of selection criteria in choosing patient representatives 22]. A criterion may be the ability to consider the evidence objectively and to make
recommendations that do not depart from preconceived views or self-interests 22]. Second, involve patients in less traditional ways (e.g. as committee member) and
choose for more innovative ways such as the use of new media that better fit the patients’
role, expectations and capabilities. The development group may not include a consumer
representative but may invite patients to review draft documents or attend a group
meeting or internet forum to share their perspectives 22]. The third suggestion is training: provide patients with sufficient information and
knowledge before and during the project. This empowers them to become effective partners
in the dissemination and implementation process 38].