Welcome to the December newsletter of the Cochrane Consumers and Communication Group.

Review priority-setting activity

Increasingly, Cochrane Review Groups are seeking input from a broad range of stakeholders to help identify high-priority topics for Cochrane reviews. In 2015, the CCCRG will undertake a priority-setting activity with consumers, policy makers, clinicians and researchers to identify up to five new consumers and communication topics for Cochrane reviews.

Overseen by a steering group, we will start locally, involving Victorian and Australian stakeholders in a priority-setting workshop, to generate a large number of potential Cochrane review questions.  We will then invite international participation in an online survey to rank these questions in order of importance.  Taking the top 10 or so questions, we will map the evidence that exists to answer these questions, identifying up to five that are appropriate for a new Cochrane review. In 2016 we will seek author teams to undertake these high priority reviews.

When the project gets underway, we will widely promote both the opportunities to participate and the results of every stage. If you’re interested in being involved, or would like to know more, please contact Annie Synnot at a.synnot@latrobe.edu.au.

Welcome to Jack Nunn

We are pleased to welcome Jack Nunn, who will be working with us for the next few months. Jack has recently moved from the UK where he worked for Macmillan Cancer Support, helping the public and patients get involved in shaping the future of research. He has worked with organisations across the UK, Europe, Asia and Australasia, including the National Institute for Health Research and the Health Research Authority (UK) and the Health Issues Centre (Victoria).

Jack Nunn, Sophie Hill, Sue Cole, John Kis-Rigo, Annie Synnot, Jessie Kaufman and Dianne Lowe sharing a ‘trans-national’ morning tea of Yorkshire parkin, pumpkin pies and jelly lamingtons.

You can help us improve

One of the projects that Jack is working on is updating and improving the Your Health Net website (http://navigatingeffectivetreatments.org.au).  We want to create something that will help people value evidence from systematic reviews.

We would love your feedback on this resource, to help us understand how it is used at the moment and areas where it could be improved.

By taking a few minutes to fill in this survey, you will help us make this resource better for everyone.  http://goo.gl/2H67RL

Recent reviews

Interventions for enhancing medication adherence

By Nieuwlaat R, Wilczynski N, Navarro T, Hobson N, Jeffery R, Keepanasseril A, Agoritsas T, Mistry N, Iorio A, Jack S, Sivaramalingam B, Iserman E, Mustafa RA, Jedraszewski D, Cotoi C, Haynes RB.

Updated on the Cochrane Database of Systematic Reviews 2014, Issue 11. DOI: 10.1002/14651858.CD000011.pub4.

Only half of patients take their medications as prescribed: are there interventions that will help them?

The cost of patients not taking their medications as prescribed can be substantial in terms of their health. Although a large amount of research evidence has tried to address this problem, there are no well-established approaches to help them, according to a new systematic review published in The Cochrane Library. The authors of the review examined data from 182 trials testing different approaches to increasing medication adherence and patient health. Even though the review included a significant number of the best studies to date, in most cases, trials had important problems in design, which made it hard to determine which approaches actually worked.

Only about half of all patients who are prescribed medication that they must administer themselves actually take their medication as prescribed. Many stop taking medication all together and others do not follow the instructions for taking it properly. This has been the case in many different diseases for at least the last half a century. In conditions where effective drug treatments are available, patients who take their medications as per their provider’s instructions can see a real difference to their health. However, when researchers in the field have tried to draw together evidence on this, they have found it unreliable and inconsistent.

The researchers looked at data from 182 trials, having added 109 recent trials that were published after the previous version of this Cochrane systematic review from 2007. The trials studied a wide range of medical conditions, from HIV to psychiatric disorders, and trialled many different interventions for increasing adherence to medication. They revealed wide-ranging effects on adherence and patient health, which were measured using a large variety of methods. Therefore, it was very difficult for the researchers to come to firm conclusions about whether any of the interventions worked well.

"The studies varied so much in terms of their design and their results that it would have been misleading to try to come up with general conclusions," said lead researcher, Robby Nieuwlaat of the Department of Clinical Epidemiology and Biostatistics at McMaster University, in Hamilton, Canada. "Based on this evidence, it is uncertain how adherence to medication can be consistently improved. We need to see larger and higher quality trials, which better take in account individual patient’s problems with adherence."

Most trials were unreliable casting doubt on the validity of the results instead. Out of 182 trials, only 17 were of high quality and each of these tested combinations of several different approaches, such as support from family members or pharmacists, education and counselling. Still fewer, only 5 of these 17, showed improvements in health outcomes for patients, as well as in medication adherence.

“This review addresses one of the biggest challenges in healthcare” added Dr David Tovey, Editor in Chief of the Cochrane Library “it’s a real surprise that the vast amount of research that has been done has not moved us further forward in our understanding of how to address this problem. With the costs of healthcare across the world increasing, we’ve never needed evidence to answer this question more than we do now.”

The authors have now decided to turn to the research community to help understand the issues. They have created a database of the relevant trials and made this available to other researchers in the field in order to encourage collaboration and more in-depth analyses on smaller groups of trials. "By making our comprehensive database available for sharing we hope to contribute to the design of better trials and interventions for medication adherence," said Nieuwlaat. "We need to avoid repeating the painful lessons of adherence research to date and begin with interventions that have shown some promise, or at least have not produced repeatedly negative results."

Interventions aimed at communities to inform and/or educate about early childhood vaccination

bySaeterdal I, Lewin S, Austvoll-Dahlgren A, Glenton C, Munabi-Babigumira S.

Published on the Cochrane Database of Systematic Reviews 2014, Issue 11. DOI: 10.1002/14651858.CD010232.pub2

Researchers in The Cochrane Collaboration conducted a review of the effect of informing or educating members of the community about early childhood vaccination. After searching for all relevant studies, they found two studies, published in 2007 and 2009. Their findings are summarised below.

What are interventions aimed at communities for childhood immunisation?

Childhood vaccinations can prevent illness and death, but many children do not get vaccinated. There are a number of reasons for this. One reason may be that families lack knowledge about the diseases that vaccines can prevent, how vaccinations work, or how, where or when to get their children vaccinated. People may also have concerns (or may be misinformed) about the benefits and harms of different vaccines.

Giving people information or education so that they can make informed decisions about their health is an important part of all health systems. Vaccine information and education aims to increase people's knowledge of and change their attitudes to vaccines and the diseases that these vaccines can prevent. Vaccine information or education is often given face-to-face to individual parents, for instance during home visits or at the clinic. Another Cochrane Review assessed the impact of this sort of information. But this information can also be given to larger groups in the community, for instance at public meetings and women's clubs, through television or radio programmes, or through posters and leaflets. In this review, we have looked at information or education that targeted whole communities rather than individual parents or caregivers.

The review found two studies. The first study took place in India. Here, families, teachers, children and village leaders were encouraged to attend information meetings where they were given information about childhood vaccination and could ask questions. Posters and leaflets were also distributed in the community. The second study was from Pakistan. Here, people who were considered to be trusted in the community were invited to meetings where they discussed the current rates of vaccine coverage in their community and the costs and benefits of childhood vaccination. They were also asked to develop local action plans, to share the information they had been given and continue the discussions with households in their communities.

What happens when members of the community are informed or educated about vaccines?

The studies showed that community-based information or education:

• may improve knowledge of vaccines or vaccine-preventable diseases;
• probably increases the number of children who get vaccinated (both the study in India and the study in Pakistan showed that there is probably an increase in the number of vaccinated children);
• may make little or no difference to the involvement of mothers in decision-making about vaccination;
• may change attitudes in favour of vaccination among parents with young children.

We assessed all of this evidence to be of low or moderate certainty.

The studies did not assess whether this type of information or education led to better knowledge among participants about vaccine service delivery or increased their confidence in the decision made. Nor did the studies assess how much this information and education cost or whether it led to any unintended harms.

This review is currently a ‘Featured Review’ on the Cochrane website: for more information see https://www.cochrane.org/features/do-interventions-aimed-communities-inform-and-educate-about-childhood-vaccination-improve-o

New titles

We have also registered two new titles:

• Comparing the effect of solid and liquid dosage forms of oral medications on medication adherence in children, by Audrey Lajoinie, Behrouz Kassaï Koupaï, Emilie Henin, Kim An Nguyen, Francois Gueyffier, Delphine Maucort-Boulch and Perrine Janiaud
• Interventions for improving health literacy, by Louise Sparkes, Alison Beauchamp, Richard H Osborne, Kate Seers, Danielle Mazza, Sarity Dodson and Rachelle Buchbinder.

Cochrane’s most cited review

We are pleased to report that the CCCRG review on Decision aids for people facing health treatment or screening decisions by Stacey D, Légaré F, Col NF, Bennett CL, Barry MJ, Eden KB,et alwas the most highly cited Cochrane review in 2013, with 119 citations.

Recent publications

Anneliese Synnot, our Research Fellow, was the lead author on a recent article:  AJ Synnot, SJ Hill, KA Garner, MP Summers, G Filippini, RH Osborne, SDP Shapland, C Colombo and P Mosconi. 2014. Online health information seeking: how people with multiple sclerosis find, assess and integrate treatment information to manage their health.  Health Expectations, DOI: 10.1111/hex.12253

Our Coordinating Editor, Sophie Hill, together with Michael Taylor, one our editors, were authors of a Health Policy Issues Brief, Consumer Expectations and Healthcare in Australia (http://ahha.asn.au/publication/issue-briefs/consumer-expectations-and-healthcare-australia).

Health Policy Issues Briefs are easy to read, objective papers that look at a topical health policy issue, synthesise the research evidence and recommend a way forward. They are designed to help policymakers who need to quickly find out what evidence exists in a topic area, how compelling it is, and what the implications might be when using it to develop health policies.

Twitter

If you are interested in using Twitter to help disseminate evidence you might know that Twitter is quickly becoming populated with Cochrane groups, Editors, authors, and readers. Our own group @CochraneCCRG has a growing network of over 500 followers.

There is now a monthly #CochraneAuthor chat hosted by Cochrane Collaboration @CochraneCollab, who post details ahead of time (e.g., see https://www.cochrane.org/news/tags/authors/cochrane-ceo-mark-wilson-hosts-special-edition-cochraneauthor-twitter-chat). Transcripts are available online. Please follow @CochraneCCRG and take part in the #CochraneAuthor chats when you see them coming through your Twitter feed.

Feedback

We welcome your feedback on our newsletters.  Please email any feedback to cochrane@latrobe.edu.au.

Newsletter subscription options

Manage your subscription: /newsletter/subscriptions

Unsubscribe: /newsletter/confirm/remove/