Empowering Consumers in Evidence-Based Health Care

1. Evidence-based Health Care and Consumer Involvement in Developing Countries: Challenges and Opportunities Godwin N. Aja, MCH, CHES Department of Health Sciences Babcock University Ilishan-Remo, Ogun State, Nigeria A Consumer Workshop Presentation at the African Cochrane Contributors Meeting organized by the South African Cochrane Centre, May 22-29, 2007 at the South African Medical and Research Council Conference Centre, Cape Town, Republic of South Africa

2. Wake Up Call • It is certainly expedient for developing countries consumers to contribute in the search for and development of evidence for quality assurance.

3. Food for Thought “What’s a [good] review good for without a consumer?” (Cochrane Consumer Network Newsletter, Issue 8, December 2004)

4. Cochrane Consumer: Definition • An individual who has unique personal experiences that allow him or her to provide an effective healthcare user/receiver perspective to a systematic review question. • An individual or a representative of a community health support organization or group and is generally without specialist medical knowledge. • The term, consumer, is used more broadly than for patients actively under treatment.

5. Cochrane Consumer Network (CCNet) • Links and coordinates consumer input in the work of The Cochrane Collaboration. • Empowers consumers by providing training, support, and multilevel communication. • Supports and coordinates consumers working within The Collaboration, enabling effective, open communication. • Empowers consumers involved within The Cochrane Collaboration to inform other consumers of the value of systematic reviews. CCNET “provides consumer input into developing Cochrane systematic reviews of best evidence in health care and in utilizing this evidence”. www.cochrane.org/consumers

6. The Cochrane Collaboration Structure and Consumers Collaborative ReviewGroups Centres Steering Group Methods Groups Fields The Consumer Network

7. CCNet – Who we are • Equal partners in the search for evidence • Key stakeholders • An entity of The Cochrane Collaboration • A Field within the Collaboration (works with more than one entity)

8. CCNet – What we offer • Identifying questions that are important to consumers • Commenting on Cochrane reviews • Disseminating results • Raising awareness of the importance of systematic reviews • Handsearching healthcare journals • Contributing to writing lay summaries of systematic reviews • Maintaining an e-mail discussion list and a website • Producing newsletters and disseminating information, including from reviews • Providing links between consumers and relevant Cochrane entities • Organizing workshops • Representing the views of consumers both inside and external to the Collaboration

9. CCNet – What we offer • Translating materials • Recruiting other consumers • Being a consumer editor • Being an author of a review (or part of a team) • Fundraising • Being a consumer representative on Cochrane advisory groups and the Cochrane Collaboration Steering Group

10. CCNet – How we work • More than 300 members: From Australia/New Zealand; United Kingdom/Europe; Africa; USA/Canada; Asia/Pacific; Latin America; Middle East. • The Cochrane Collaboration itself has Centres and Branches in over 23 different countries. • The Convenor coordinates the activities of the Network and strives to strengthen the role of consumers in the Collaboration and outside • Supported by an Administrator in organizing and supporting our membership • An international Governance Council (Coordinating Team) is charged with ensuring equitable opportunity for consumer members and good governance. • Two representatives on The Cochrane Collaboration Steering Group • Operates principally via the internet (regional meetings and the annual Cochrane Colloquium provides an opportunity to meet)

11. CCNet – How we work To contact the Cochrane Consumer Network, send an e-mail to: • ccnet-contact@cochrane.de with your name and enquiry To find out more about CCNet, go to: • www.cochrane.org/consumers

12. Current Stages* of Consumer Involvement in Developing Countries • Precontemplators: No idea that EBHC exists. • Contemplators: EBHC exists but no commitment. • Preparators: Intending to take action soon. • Actors: Considerable commitment of time and energy • Maintainers: Super commitment (in consumer recruitment, training, support, etc). *(Prochaska)

13. Recruiting developing countries consumers: Challenges • Language of evidence (medical science) - technical • Practitioners of evidence (medical science) – sophisticated (medical distance) • Paternalism not partnership • Technology gap – so wide • Resources (time commitment vs. volunteerism) - limited • Past experiences - inhibitive • Culture - different

14. Recruiting developing countries consumers: Opportunities • CCNet – a rallying point • Partnership with local community leaders/consumer organizations • Partnership with religious groups • Institute awards/incentives on consumer participation at local, provincial and national levels • Developing Countries Network

15. Conclusions • Developing countries consumers cannot afford to remain spectators in the search and push for evidence anymore. • Involvement means that the needs and preferences of the consumer are defined and not denied. • CCNet is the spring board for developing countries consumers. • The evidence in evidence-based health care may be much more evident as more consumers get actively involved in the production and dissemination of evidence.

16. Group Discussion • How can we overcome the challenges? • How can we harness the opportunities? • What’s in a name? Consumers, users, patients, civil society, etc?