Envisioning Consumer Participation The Cochrane Collaboration reviews medical research. These reviews synthesize all that information available about a specific health topic and experts assess the quality of that research. Most research is driven by pharmaceutical interests. Impact of any medical condition affects the quality of life of that individual. CCNet was formed in 1983 to support consumer interests within the Collaboration. Catherine McIlwain Tel  +44 1865 310138  cmcilwain@cochrane.org

Consumers and Cochrane The Cochrane Consumer Network (CCNet) encourages consumers throughout the world to give their perspectives and have their say on priorities for health care. Consumers is a broad term that includes all users or receivers of health care, patients, a members of the public, caregivers and family members. Our Vision: Enhanced accessibility and relevance of Cochrane reviews through consumer and community participation.

Coming Together Consumers Review Groups Cochrane Evidence CCNet works with Consumers to advance Cochrane’s ability to improve this information by answering questions that are important to consumers. Consumers and health practitioners can then work together to make the best possible decisions about health care. CCNet actively forges connections between projects of consumer interest and shares opportunities for involvement with its members. CCNet Aims: To enable and support consumer participation in The Cochrane Collaboration; and continue to develop the use and usefulness of consumer participation in Cochrane groups, in particular Review Groups

What’s In It For Me? Statistics: beginning of 2011 1102 consumers affiliated with Cochrane 760 are members of Ccnet 549 consumers participate or have thought about participating in reviews 228 Ccnet members have expressed an interest in participating.

Consumer Contributions The authors of Cochrane reviews may choose a treatment for a review because of their own interests and experiences as a clinician or a healthcare researcher; however, these are not always the questions of most concern to healthcare consumers, their families and their carers. The purpose of consumer input during the review process is to: Ensure that review questions are relevant to people who require health care and are offered treatment by their healthcare providers;   Consumers offer a unique perspective.

A Community of Consumers CCNet Listserv consumers@lists.cochrane.org Facebook (multi-lingual) Add “CCNet Cochrane Collaboration” Consumer Discussion Boards Five key areas are targeted by CCNet activities: Consumer involvement in the Cochrane review process Training resources for consumers to participate in reviews Communication tools that engage consumers Global network providing accessible evidence Consumer support utilizing evidence-based health care information Together we can use consumer input to: Prioritize topics for new reviews. 

Meet Consumer Needs Should I or shouldn’t I? Will it really help? How can I know for sure? It is not always easy for researchers and providers to understand how the questions for Cochrane reviews need to be stated in order to be useful for consumers. The purpose of consumer input during the review process is to: Identify the end results of treatments that are important to consumers (it may be different than those identified by providers);  

Expand Health Literacy Cochrane Journal Club www.cochranejournalclub.com Online Podcasts and Webinars www.cochrane.org/multimedia/ Cochrane Consumer Learning consumers.cochrane.org/resources The Consumer Network supports consumers with training and guidance to empower them to provide a consumer perspective in Cochrane reviews. Consumer input during the review process will: Improve public access to reviews by ensuring that the language is sensitive to consumers and can be understood by a wide audience;  

Patient Needs and Experiences  CCNet promotes healthcare user input into and acceptance of evidence-based practice. Consumer experience offers valuable input during the review process to ensure that reviews: Weigh the benefits of treatment against the potential harms – from a consumer perspective; Consumer insights = better research

Stay Informed CCNet Newsletters www.cochrane.org/news/newsletters Consumer Blog consumers.cochrane.org/blog Tweet #CochranConsumer CCNet - Working for you: Ensuring CCNet involvement on CRG projects for consumers New ways to access information Requirements for plain language summaries Simplifying participation with clear checklists Lobbying for changes within Cochrane to support consumer involvement; and usage of reviews Developing guidelines for reviewers Identifying reviews that are important to consumers Working to build partnerships: Consumers Union, IAPO, Cochrane Library promotion

Moving Forward What does Cochrane do well to involve consumers? What prevents consumer participation in the review process? Are there other ways for consumers to get involved? What are your thoughts?