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Table 2 Characteristics of selected papers

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

  Authors Title Journal Kind of article Level of evidence Dissemination strategy as evaluated in article and/or results
1 Abrahamian et al. Strategies for health system implementation of guidelines on overweight and obesity. BMJ Qual Saf. 2013; 22(Suppl 1): A34-A34. Description of used strategies. 3/4 Patient-level interventions like proactive outreach for health education classes and telephone-based coaching, point-of-care educational publications, and after-visit summaries with weight management recommendations.
Continued improvements in clinician/patient communication about weight, collection of patient weight information and patient health outcomes have been observed.
2 Allu et al. Hypertension: Are you and your patients up to date? Can J Cardiol 2010;26(5): 261-264. Opinions of authors based on their experiences. Their opinions are furthermore based on literature about knowledge translation research. 4 CHEP (Canadian Hypertension Education Program) and BPC (Blood Pressure Canada) are developing a series of innovative new programmes to try to enhance hypertension knowledge translation and dissemination. It consists of a combination of methods: website, email notices, interactive internet-based lectures, community hypertension champions, patient association and variety of learning tools (posters, summaries, handouts, pocket cards, standardised slide sets).
3 Appiah et al. Challenges and opportunities for implementing diabetes self-management guidelines. JABFM January–February 2013 Vol. 26 No. 1 90-92. Qualitative study consisting of 3 group discussions of professionals. 3 Key themes that emerged as challenges of implementing evidence-based guidelines included lack of easily retrievable electronic patient health information, inadequate coordination with other health care providers when implementing guidelines, conflict between information in the guidelines and physicians’ knowledge and physician compensation by patient load rather than by quality of care.
Opportunities that were mentioned: the use of health coaches or nurses trained in diabetes self-management and active collaboration between practicing providers and key stakeholders in the development and dissemination of guidelines.
4 Azevedo et al. Control of Allergic Rhinitis and Asthma Test (CARAT): dissemination and applications in primary care. Prim Care Respir. 2013; 22(1): 112-116. Description of strategies and opinion based on international recommendations and best practices. 3/4 Widespread availability of cross-cultural adaptations, print, web and mobile versions, a free open model of distribution, user support through a dedicated website, clinical educational sessions and dialogue with health authorities and integration into clinical guidelines.
5 Boulet et al. Implementing practice guidelines: a workshop on guideline dissemination and implementation with a focus on asthma and COPD. Can Respir J 2006;13(Suppl A):5A-47A. Opinions of authors, based on a workshop with leading professionals. 4 Potential successful strategies according to leading professionals are:
Making a dissemination plan in parallel with the development of the recommendations.
Making a lay version that is customised to the target audience.
Making the lay version relevant for the target audience
Making consistent, unambiguous and credible lay versions
Making lay versions that provide clear, explicit and specific information.
Making lay versions that contain information about where more in-depth information can be found.
Using a combination of dissemination strategies like : organising press conferences, providing lay versions through Public Libraries, developing books to reach children and developing posters with ‘trigger’ stickers or making a web site endorsed by a VIP.
6 Drouin et al. Dissemination and implementation of recommendations on hypertension: the Canadian experience. Allergy, Asthma & Clinical Immunology 2010, 6 (Suppl 4):A10. Description of experiences/ideas/opinions of authors. 4 Dissemination requires a combination of different, mutually reinforcing strategies.
7 Eccles et al. Developing clinical practice guidelines: target audiences, identifying topics for guidelines, guideline group composition and functioning and conflicts of interest. Implementation Science 2012, 7:60. Opinions mainly based on a Systematic Literature Search of Legare and colleagues (2011). 3/4 Dissemination is more successful if patients are involved in the development of guidelines.
The involvement of patients increases the comprehensiveness of the recommendations and makes the adaption of the recommendations to the target population easier.
It is important to use selection criteria in choosing patient representatives.
Patients can also be involved in less traditional ways.
Choose for more innovative ways such as the use of new media that better fit the patients’ role, expectations and capabilities.
Involve a heterogeneous group of patients in order to communicate to a diversity of patients.
Training and support can be helpful to make the involvement of patients in the development and dissemination of recommendations successful.
8 Eijk van et al. Dissemination and evaluation of the EULAR recommendations for the role of the nurse in the management of chronic inflammatory arthritis. Results of a multinational survey among nurses rheumatologists and patients. Rheumatology 2014; 53(8): 1491-1496. Description of results of a multinational survey among nurses rheumatologists and patients about the dissemination of recommendations. 3 An internet survey was used in order to disseminate recommendation among nurses, rheumatologists and patients. Snowball sampling was used to reach as much people as possible.
A successful change of clinical practice in accordance with the recommendations requires an effective implementation strategy in which the key stakeholders delivering and receiving care (among others patients), are involved in the dissemination.
9 Gainforth et al. Examining the effectiveness of a knowledge mobilisation. initiative for disseminating the physical activity guidelines for people with spinal cord injury. Disabil. Health. 2013; 6 (3):260-265. Description of results of a questionnaire aimed at the examination of the reach and effectiveness of an event-based KM initiative . 3 An event-based KM initiative may be effective for initial dissemination of guidelines. Efforts are needed to foster long-term guideline adoption.
10 G-I-N-Public working group. G-I-N Public Toolkit. Patient and public involvement in guidelines. - Toolkit consisting of information about patient involvement in guidelines. The information based on a series of consultation activities held by the working group at international conferences of the Guidelines International Network. The knowledge generated by the consultation, the work and the experience of the members of the working group and literature on the topic formed the basis for developing the toolkit. 4 Lay versions of guidelines should be made by patient organisations, using a heterogeneous group of patients with different disease status and educational levels.
Patients who have participated in the development of the recommendations can also actively contribute to the dissemination process
The establishment of permanent groups, networks or ‘virtual panels’ of patients can help to disseminate guidelines. 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.
Patients involved in the dissemination process have specific needs that should be taken into account. Training and support is an important need.
Lay versions should be disseminated by National patient organisations 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.
Personal stories of patients in media can help to raise awareness of new recommendations
11 Guyatt et al. GRADE guidelines: a new series of articles in the Journal of Clinical Epidemiology. Journal of clinical epidemiology, 2011. 64(4): p. 380-2. The “Grades of Recommendation, Assessment, Development, and Evaluation” (GRADE) approach provides guidance for rating quality of evidence and grading strength of recommendations in health care. 4 Guidelines developed for resource-rich countries are often inapplicable in resource-poor countries.
12 Hoens et al. Knowledge brokering: an innovative model for supporting evidence-informed practice in respiratory care. Can.Respir.J. 2013; 20 (4): 271-274. Description of the role of a KB in health care. 4 The use of knowledge brokers (KB) which are individuals who work to bridge the gap between researchers and knowledge users. In the health care setting, KBs work closely with clinicians to facilitate enhanced uptake of research findings into clinical practice. They also work with researchers to ensure research findings are translatable and meaningful to clinical practice.
The KB role has provided an important communication link between researcher and knowledge user that has facilitated evidence-informed practice to improve patient care.
13 Jae Jeong et al. Major cultural-compatibility complex: considerations on cross-cultural dissemination of patient safety programmes. BMJ Qual Saf 2012 21: 612-615. Description of experiences/ideas/opinions of authors based on own experiences . 4 Cultural differences should be taken into account when disseminating guidelines to other countries.
Careful consideration should be given to social and cultural sensitivities and differences. Success in one country does not guarantee success in other countries.
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.
14 Ke et al. Disseminating the Canadian diabetes association 2013 clinical practice guidelines: Guidelines. Diabetes.ca in action. Can J Diabetes. 2014; 38: S72-S73. Description of strategies. 4 An electronic point-of-care tools, templates, laboratory prompts and a communications campaign, complemented by minimal hardcopy resources. Electronic tools (available at guidelines.diabetes.ca) include easily-searchable guidelines with slide set summaries and video narrations, brief reference guides, interactive decision-support algorithms, flow sheets and patient self-management tool.
Results: In a 6-month period, there have been 190 291 views from around the world, with the average user spending up to 5 min on the site. For guidelines to have an impact on patients, they must be effectively integrated into clinical care. In this digital era, this necessitates electronic point-of-care tools, usable and immediately accessible information resources, and a recognised web presence.
15 Kiltz et al. ASAS/EULAR recommendations for the management of ankylosing spondylitis: the patient version. Ann Rheum Dis. 2009 Sep;68(9):1381-6. Description of experiences with making a lay version of recommendation together with patients. 3/4 In cooperation with patient organisations, 18 patients were invited to attend a meeting. As a starting point the original publication and a version created by Canadian patients was used. After intensive discussions, the wording was adjusted and a vote was held on the new wording of the recommendations aiming for >80 % agreement on each sentence. Finally, patients were asked to indicate their level of agreement with the content of the recommendations
Ten recommendations were successfully translated into a patient-understandable version. The original text was changed in most cases. In all but one case, there was broad agreement with the proposed translation. The overall agreement with the content of the recommendations was high.
16 Maximov et al. Implementation of the osteoarthritis clinical guideline: Results of a cluster randomised trial in primary care. Ann Rheum Dis. 2013; 71:307-308. RCT of dissemination of guideline. 2 One-day didactic educational meeting, provision of the printed guideline and patient brochures.
The implementation of the clinical guideline by means of the didactic educational meeting in combination with dissemination of the printed guideline and patient brochures may optimise treatment and improve patient outcomes in a long-term perspective, but trials with a greater sample size are needed to confirm this effect more precisely.
17 McGuire et al. Promulgation of guidelines for mucositis management: educating health care professionals and patients. Support Care Cancer. 2006: 14: 548–557. Survey among cancer health care professionals on dissemination. 3 Awareness of the guidelines of professionals is limited in the US, and use of the guidelines worldwide is minimal.
Information for patients is often too difficult for the general public. Information can be simplified by using less medical and technical terms or by giving an explanation of the terms.
Patients do not speak the same language as health professionals.
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 10 lines or less may help to make information more readable
18 Sharpe et al. Development of culturally tailored educational brochures on HPV and Pap tests for American Indian women. J Transcult Nurs. 2013; 24 (3):282-290. Opinion. 4 A participatory process successfully engaged nursing staff and patients in creating culturally appropriate brochures for clinic use.
19 Snyman. Using the printed medium to disseminate information about psychiatric disorders. South African Psychiatry Review.7(4) 15-20 2004. Text-focused evaluation method, using the adapted version of the suitability assessment of material (SAM-test) to evaluate the effectiveness of brochures disseminating information to patients. 3 The findings indicate to which degree brochures about schizophrenia do not meet general accepted criteria for effective printed health messages. The readability level of the brochures indicated a target audience of at least university graduates which makes them unsuitable as information material for the general South African public.
20 Tulder van et al. Disseminating and implementing the results of back pain research in primary care. SPINE Volume 27, Number 5, pp E121–E127. 2002. Opinions mainly based on a workshop with leading experts on the area of dissemination. 4 The involvement of patients increases the comprehensiveness of the recommendations and makes the adaption of the recommendations to the target population more easy.
Lay versions should be developed in order to disseminate guidelines to patients.
A successful lay version provides clear, explicit and specific information.
Recommendations should be readable, comprehensible, relevant, consistent, unambiguous and credible to increase the success of the dissemination.
Information about where more in-depth information can be found should be included in the lay version.
The use of passive dissemination strategies, such as a leaflet or brochure is insufficient to educate patients or change daily routine because such information does not endure in the long term.
21 Vandvik et al. Creating clinical practice guidelines we can trust, use, and share: a new era is imminent. CHEST. 2013; 144 (2):381-389. Opinion and description of experiences. 4 An online application that constitutes an authoring and publication platform that allows guideline content to be written and structured in a database, published directly and that includes electronic medical record systems, web portals, and applications for smartphones/tablets. This system allows automatic updates.
22 No author mentioned. Involving patients and the public in implementing NICE guidance. http://webarchive.nationalarchives.jsp Suggestions on how to involve patients, based on own experiences. 4 The involvement of patients increases the comprehensiveness of the recommendations and makes the adaption of the recommendations to the target population easier.
Ideally, a heterogeneous group of patients with different educational levels should be involved in order to communicate to a diversity of patients.