Papers and Reports about Consumer Involvement

Papers and Reports

2014

Taylor, M and Hill, S, 2014. Consumer expectations and healthcare in Australia. Deeble Institute Issues Brief. 2014 Jun 23. Follow [link]

2012

Kremer JAM, 2012. Listen, dream, and change: using the power of patients to improve care. J Participat Med. 2012 Oct 17. Follow [link]

2010

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]

2009

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].

2005

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]

2003

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].

2002

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].

1994

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."