Evidence-based Health Care and Consumer Involvement in Developing Countries: Challenges and Opportunities

Godwin N. Aja, MCH, CHESDepartment of Health Sciences

Babcock UniversityIlishan-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

Wake Up Call

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

Food for Thought

“What’s a [good] review good for without a consumer?”

(Cochrane Consumer Network Newsletter, Issue 8, December 2004)

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.

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 Cochranesystematic reviews of best evidence in health care and inutilizing this evidence”.

www.cochrane.org/consumers

The Cochrane Collaboration Structure and Consumers

Collaborative Review Groups

Fields

The Consumer Network

Centres

Steering Group Methods

Groups

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)

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

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

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)

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

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)

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

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

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.

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?