Papers and Reports
Kremer JAM, 2012. Listen, dream, and change: using the power of patients to improve care. J Participat Med. 2012 Oct 17. Follow [link]
Herxheimer, A., Crombag, R., Leonardo Alves, T. 2010. Direct patient reporting of adverse drug reactions: A fifteen-country survey and literature review. Health Action International (HAI) Europe, 01-2010/05. Download [PDF]
Horey, D. 2010. Consumer Involvement in The Cochrane Collaboration. Presented at The Cochrane Collaboration's Mid-Year Strategic Meeting; Auckland AUS, March 2010. Download Executive Summary [PDF], Background Paper [PDF], Appendices [PDF].
Legare, F., Boivin, A., van der Weijden, T., Pakenham, C., Burgers, J., Legare, J., St-Jacques, S., Gagnon, S. Patient and public involvement in clinical practice guideleines: A knowledge synthesis of existing programs. Medical Decision Making Journal. Download [PDF]
Belizán, M., Wale, J., Vij, S. 2009. Summary Report of CCNet Prioritisation of Reviews on The Cochrane Library project (October 2007 to February 2009). Prepared for The Cochrane Collaboration Opportunities Fund. Download full report [DOC].
Wale, J. 2009. Results of an online survey on the CCNet e-mail discussion list (October to December 2006). A report of survey responses by consumers and Review Group representatives. Download survey report [DOC].
Shea, B., Santeso, N., Qualman, A., Heiburg, T., Leong, A., Judd, M., Robinson, V., Wells, G., Tugwell, P., The Cochrane Musculaoskeletal Group. 2005. Consumer-driven health care: Building partnershiops in research. Health Expectations, 8, pp. 352-359. Download [PDF]
Levitt, M. 2003. Public Consultation in Bioethics. What's the Point of Asking the Public When They Have Neither Scientific Nor Ethical Expertise? Health Care Analysis, Vol. 11, No. 1, March 2003. Download [PDF]
Wale, J. 2003. Results of Questionnaire for Cochrane Review Groups and Fields on Consumer Participation (April to June 2003). A report outlining Cochrane Review Group and Field Responses to a Questionnaire on Consumer Participation sent out to groups in 2003 to seek information on their models and needs for consumers. Download survey results [DOC].
Horey, D. 2002. “It takes time to find your role”: a survey of consumers in the Cochrane Collaboration in 2002. A summary of the results of an e-mail survey sent out to CCNet members to identify the background to why and how they are active in The Cochrane Collaboration. The recommendations on page 4 of this document are still relevant. Download survey report [DOC].
Bastian, H. 1994. The Power of Sharing Knowledge: consumer participation in the Cochrane Collaboration [PDF]
A thought-provoking article written by Hilda Bastian in 1994, still relevant today. She states that what is being produced in the Collaboration is knowledge.
- "When particular forms of health care are determined to be 'ineffective', there is likely to be pressure to abandom them.....it is also a value judgement, and it should not be made by professionals and service providers alone."
- "Better balance lies in forms of partnership rather than tokenism."
- "The effort and expertise required to focus on consumers and engage the community are often understimated."