Cochrane Review Groups
Different groups exist for different health conditions: Cochrane Review Groups (CRG) cover important areas of healthcare diseases and conditions. Review groups are responsible for producing and maintaining Cochrane reviews on specific healthcare questions. You will see in The Cochrane Library, for example, a Cochrane Consumers and Communication Group, Cochrane Epilepsy Group, Cochrane Heart Group and a Cochrane Pregnancy and Childbirth Group.
The activities of each group (or entity in Cochrane language) are monitored and co-ordinated by one person for each group, known as the Managing Editor. This person manages the day-to-day running of the group and is usually the contact person. The co-ordinating editor leads the group and is responsible for the quality and subject of reviews.
Each group attracts members with a variety of backgrounds, experience and expertise, who contribute to the process of developing systematic reviews. They may be doctors, nurses, researchers, health advisers, consumers and caregivers.
What Cochrane groups say
The aim of any medical care is to benefit patients. Ultimately, the best person to judge whether any healthcare intervention has been beneficial is the patient, and people in his or her close environment. It therefore seems reasonable that patients and consumers in general should be more directly involved in systematic synthesis of the clinical trial results on healthcare interventions and treatments.
In the 2009 Review of Consumers in Cochrane, the most common things Cochrane Review Groups said they wanted from comments from consumers were to improve the:
Readability and/or quality of reviews;
Usefulness of the plain language summaries.
What are the interventions that consumers are uncertain about; which interventions do we want to know more about? What are our particular concerns; what measures of clinical outcomes, or endpoints, are particularly relevant to us - and does the review address these?
What financial conflicts are there in the clinical trials that have been carried out?
Collaboration with consumers gives Review Groups the opportunity to explain to the general public the need for critical assessment of scientific data and of its representation in the media.
Challenges to consumer participation in the Cochrane review process:
As part of the 2009 Review of Consumers in Cochrane, just over half of the Review Groups said that they were gaining benefits from involving consumers. Consumers bring different skills, knowledge or experience and make a positive difference to their Review Group at least some of the time.
The main barrier identified by Review Groups was funding.
One Review Group Managing Editor said: My worry is that [consumers] are brought in on one premise that you’ve had the disease, you’re a caring person with time enough to devote and you buy into the Cochrane ethic and so on, but actually when it comes down to sitting and reading a paper, there are very specific skills which they may or may not have.
Consumer comment: I think it does help to have a scientific or medical background, but it’s not as important as it used to be because you can just Google practically everything and come up with an answer. To do what I’m doing you need to be able to write… You’ve got to be able to write in literate English.
Feedback to consumers is not always enough: Review Groups appear to appreciate comments but I don't know to what extent the authors take the comments into account and whether they even think consumer input is meaningful. One Review Group did provide a summary including all peer review comments and the authors' reactions to the comments (which was very interesting!)
The Collaboration works mostly through the internet and some people miss personal contact, particularly when they want to follow something up.
How a consumer identifies with a particular Review Group is often about building relationships, which CCNet sets out to assist with.
Fields cover health care in a broader sense than do Review Groups. These areas may include a major section of health care such as the setting of care (e.g. primary care), the type of patient/consumer (e.g. older persons), the type of provider (e.g. nurses), or the type of intervention (e.g. vaccines or complementary therapies). Fields advocate for evidence-based health care in their area of health. They work with stakeholders on disseminating information from Cochrane reviews, prioritising review topics that have not yet been answered, making sure the reviews in their field are accessible and working with Cochrane Review Groups to facilitate the review process.
The principal contact person in a field is its Co-ordinator.
Cochrane centres provide a range of services designed to support Cochrane Review Groups, Fields and Methods Groups in their area and to facilitate the review process. They serve as a regional source of information about The Cochrane Collaboration, provide support to Cochrane contributors within a defined geographical area and promote access to The Cochrane Library. Each centre has a Director. A Centre may also take on other tasks across the Collaboration (e.g. the German Cochrane Centre manages this website).
Cochrane Consumer Network
The Consumer Network supports consumer participation within The Cochrane Collaboration, internationally. The Network is available to any active consumer. It enables communication with other consumers, works to provide a sense of belonging within The Cochrane Collaboration through connecting people and assists people and groups with working with consumers. We promote plain language summaries, dissemination of information from Cochrane reviews and the promotion of evidence-based practice.