Cochrane Consumers and Communication Review Group: leading the field on health communication evidence

Authors

  • Megan Prictor,

    Corresponding author
    1. Cochrane Consumers and Communication Review Group, School of Public Health and Human Biosciences, Faculty of Health Sciences, La Trobe University, Australia
    • Correspondence

      Megan Prictor, Cochrane Consumers and Communication Review Group, School of Public Health and Human Biosciences, Faculty of Health Sciences, La Trobe University VIC 3086 Australia.

      Tel: 61-3-9479 5779;

      Fax: 61-3-9479-5784;

      Email: m.prictor@latrobe.edu.au

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  • Sophie Hill

    1. Cochrane Consumers and Communication Review Group, School of Public Health and Human Biosciences, Faculty of Health Sciences, La Trobe University, Australia
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Abstract

This paper presents an overview of the history and achievements of the Cochrane Consumers and Communication Review Group, part of the international Cochrane Collaboration. It surveys the Group's establishment and structure, the scope of its Cochrane Reviews and the growth in its publication output over its 16-year history. The paper examines the Group's developmental work in interventions and outcomes related to patient communication and involvement, as well as methodological resources for review authors. It also outlines the Review Group's research partnerships with state, national and international agencies, particularly in the areas of chronic disease management, medicines use, public involvement, and vaccines communication. The Group's strong contribution to an evidence-base for health communication and participation are acknowledged.

Brief History

Following exploratory discussions from mid 1995, the Cochrane Consumers and Communication Review Group was registered with The Cochrane Collaboration on 12 October, 1997, led by its inaugural Coordinating Editor Hilda Bastian (then based in Adelaide, Australia) and Managing Editor Paola Rio (in Melbourne, Australia), as well as Trials Search Coordinator Fay Bower, with funding support from the Department of Human Services, Victoria, Australia. It was the fourth Cochrane Review Group to be registered in Australia. In late 1999, the Group published its first Cochrane Review, “Interventions for helping patients to follow prescriptions for medications”, by Brian Haynes et al. [1]. That this review is now is one of the most highly accessed and cited reviews on The Cochrane Library is eloquent testimony to the commitment of Cochrane review authors and triallists in this field, and the strong relationships the Group has forged with them over many years.

In July 2001, the Group relocated to its present home at La Trobe University, Bundoora, Australia, with the leadership reins handed to Sophie Hill as Coordinating Editor and with Megan Prictor as Managing Editor. Since then, the Group has increased the size, and developed the expertise, of its dedicated international editorial team, which includes specialists in the areas of shared decision-making, public involvement, e-health, patient-centred care and communication disorders. In 2013, the Group appointed experienced editor and author Rebecca Ryan to the role of Deputy Coordinating Editor. The Group is also supported by a part-time Trials Search Coordinator, John Kis-Rigo, who provides advice and assistance for authors as they search for studies relevant to their reviews.

Scope

The Consumers and Communication Group coordinates the preparation and publication of Cochrane Reviews of interventions which affect the way people interact with healthcare professionals, services, and researchers. It has much in common with the Cochrane Effective Practice and Organisation of Care (EPOC) Review Group, which focuses on interventions directed at health professionals, in that both Groups work across “disease” areas to look at issues in the way care is delivered. The Consumers and Communication Group focuses on information, communication, and engagement interventions, either directed to or coming from consumers (patients), or aiming to change service delivery to improve people's experiences of care. Some of its leading reviews focus on improving informed consent for research participation [2] and surgery [3, 4]; helping patients make decisions about screening [5] and treatment [6, 7]; peer support for patients [8, 9]; discharge information [10] and follow-up care [11]; and education and support for people suffering a chronic illness [12-16]. The Group is developing a strong profile in the field of improving the experiences of carers [17-19] and new health communication technologies [20-24].

A Growing Presence

The Consumers and Communication Group's reviews tend to be large and complex, involving diverse study designs and requiring intensive conceptual development. As such, growth in publication output has been slow, but steady (see Fig. 1). As of July 2013, the Group had 52 reviews, 1 overview and 24 protocols published in The Cochrane Library. Among these are some of The Cochrane Collaboration's most influential reviews. For instance, “Decision aids for people facing health treatment or screening decisions,” by Dawn Stacey et al. [6] (and in earlier iterations by Annette O'Connor et al., [25] was the fourth most highly cited Cochrane review in 2012 (of reviews published in 2010 or 2011).

The Group also inspires broad collaboration, with some 820 active contributors (including 483 review authors) as of August 2013. Several authors have helped to prepare multiple reviews with the Group, and have acted as mentors, encouraging new participants to join and participate in review training. In 2013, the Group's presence on Twitter (@cochraneccrg) is helping to draw a new audience to its reviews of communication evidence.

Figure 1.

Publication output, Issue 3 1997 to Issue 7 2013.

Developmental Work

Reviews in the scope of the Group are commonly broad in focus, addressing “shared” experiences, such as living with chronic illness or participating in decision-making. The newness of patient communication as a research field means that there is no common language for similar concepts, and little appreciation of the breadth of the consumer or carer experience. This impacts on the quality of the evidence available for the reviews because data are so disparate. In response, the Group has developed taxonomies of interventions [26] and outcomes [27] to guide authors and to provide a common language where possible.

Whilst there are many relevant trials for most of the Group's reviews, meta-analysis is often not possible and this led the editors to prepare and maintain detailed resources for authors, including guides on study design and quality [28, 29]. From feedback, it appears this has benefited researchers who want to do reviews but who lack a background in epidemiological or quantitative research.

Many review teams have consumer advisory panels but it is a core policy for the Group that all reviews go to at least one consumer referee.

Prioritization and Dissemination

Over the last decade, growing awareness of the importance of evidence-informed communication and participation [30] has led to government investment in reviews and growing interest amongst researchers in preparing reviews. Key reviews across the spectrum of the patient–consumer–carer experience are emerging. This contrasts significantly with the situation 10 to 15 years ago, when awareness was so low. More generally, this means that the priority for the Review Group has been communication. This led to a range of knowledge translation activities. A visual diagram of a systematic review was created and nested in a website which explains Cochrane Reviews (navigatingeffectivetreatments.org.au/), and is now incorporated into training materials for consumers. Staff in the Group also prepare Evidence Bulletins [30], so that a more receptive context for initiating reviews could emerge. To prioritise review questions across such a diverse terrain would be challenging, so where possible the Group's staff have nested a formal review exercise into specific topic-focussed research, such as the Communicate to Vaccinate project discussed below.

Impact

The Review Group's “unofficial” impact factor for 2012 is 8.533, reflecting the broad applicability of the reviews. Clinical guidelines increasingly are using them to support best practice in communication, education, and support. For example, Stacey's review on decision aids [6] has been used in no fewer than 12 current guidelines (11 of these from the National Institute of Health and Clinical Excellence in the UK (NICE); the most of any Cochrane review [31].

Partnerships

The Consumers and Communication Group has developed a strong partnership with its primary funder, the Department of Health (formerly the Department of Human Services) Victoria, Australia, as well as with the Australian National Health and Medical Research Council, which provides recurrent infrastructure funding. Sophie Hill's involvement in the Department's Participation Advisory Committee has been important in the incorporation of review evidence into the Victorian government's consumer participation policy “Doing it with us, not for us” [32]. This partnership has also inspired and supported two “Evaluating effectiveness of participation” grant programme rounds for Victorian health services to assess specific interventions to improve communication and participation.

The IN-DEEP project is an Australian–Italian collaboration between researchers, multiple sclerosis (MS) societies and people with MS [33]. Using a four-stage mixed methods design, a model has been developed for presenting evidence-based health information on the internet for people with MS and their families. This has led to websites hosted in Australia and Italy which communicate evidence to people in more accessible and meaningful ways (see www.makingsenseofmsresearch.org.au and indeep.istituto-besta.it/).

Further rewarding collaborations have been formed with international partners. For instance, the Group collaborated with the EPOC Group for a project funded by the Canadian Agency for Drugs and Technologies in Health between 2006 and 2013 to develop and maintain the “Rx for Change” database. This database (www.cadth.ca/en/resources/rx-for-change) captures evidence on interventions to improve prescription practices and medicines use. The Consumers and Communication Group contributed to the segment on consumer-targeted interventions, including information provision or education, or promoting self-management skills, on medicine use [34].

Another vibrant multipartner collaboration involving the Group is the Communicate to Vaccinate project (www.commvac.com/) which began in 2010 and is now in its second phase. This project, funded by the Norwegian Research Council and led by the Norwegian Knowledge Centre for the Health Services, aims to “build research evidence for improving communication about childhood vaccinations with parents and communities in low and middle income countries” [35]. Other partners comprise the Swiss Tropical and Public Health Institute, the University of Cape Town, South Africa, University of Calabar Teaching Hospital, Nigeria, Ministry of Health of Mozambique, Pontificia Universidad Católica de Chile, the International Union for Health Promotion and Education, plus researchers from the Review Group's home institution at La Trobe University. The Review Group's role has included the development of a taxonomy of these communication interventions to identify where research evidence is strong and where more is needed [36], and the completion of a Cochrane Review assessing the effects of face-to-face interventions to inform or educate parents about childhood vaccination [37]. The Group has also worked with its Norwegian partners toward the completion of an associated Cochrane Review on community-level vaccines communication [38].

Challenges

The main challenge for the Review Group is to build the evidence where many trials exist but few systematic reviews have been done. Human capital is also an issue because there are few academic departments and professors of Consumer Participation. Hence, capacity building has been a strong theme in the Group's work. With the introduction of the Methodological Expectations for Cochrane Intervention Reviews (MECIR) methodological standards, the Review Group has continued to revise and update its materials for authors and editors, with the introduction in 2013 of a series of Quick Guides on topics including narrative synthesis and meta-analysis, health equity and theoretical models (see cccrg.cochrane.org/author-resources). Authors can send feedback to the Group's staff so that resources can be further improved and tailored to the problems they are facing. Over time, the Review Group will be accepting new types of Cochrane reviews, such as reviews of qualitative studies addressing people's experiences, which will require further development of author resources [39].

The Future

Governments around the world are releasing policies to improve the delivery and experience of care, recognizing that consumers, who are integral to successful health care, need to be involved and informed to manage their health. Failure to communicate effectively is costly to society and to individuals. Challenges for the Cochrane Consumers and Communication Review Group include building a better evidence base of interventions tailored to people with more than one health problem, people vulnerable to poor communication and people in resource-poor settings.

Acknowledgements

Megan Prictor and Sophie Hill are employed in La Trobe University positions funded in part by the Department of Health, Victoria (MP, SH), the National Health and Medical Research Council (SH), and the Norwegian Research Council (SH).

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