The patient perspective in health policy: Are we there yet?

This year will be remembered by consumers for the progress made by the federal government and its decision-makers in listening to the patient perspective. It is a year that has seen more meaningful patient involvement on health policy than ever before. On issues such as Cox-2 inhibitors, the proposed National Pharmaceutical Strategy, and cross border Internet pharmacy, patients have been involved.

Health Canada included two CAPA representatives, both with voting member status, on the Expert Advisory Panel to review the safety of Cox 2 inhibitors, and their colleagues were invited to present their point of view at a national forum hosted by Health Canada preceding the Panel’s deliberations. In addition arthritis consumers were encouraged to provide their personal perspective via the Health Canada website. For the first time the patient experience was a consideration that impacted decisions being made about the medications people with arthritis take daily.

This involvement was followed by a working conference on one element of the proposed National Pharmaceutical Strategy (NPS), Strengthening Real World Drug Safety and Effectiveness. Again patients attended the conference as equal stakeholders. The development of a comprehensive NPS was a recommendation that came out of the First Ministers meeting on Health Care in September 2004. Along with encouraging the use of digital technology and evidence-based medicine, the NPS proposal included, in part, catastrophic drug coverage, accelerated access to breakthrough medications through an improved drug review and drug approval process, and a national drug formulary. The First Ministers taskforce, until mid 2005, was secretive. Now the shift is towards transparency. The taskforce is to submit its report to the First Ministers in June 2006.

Next we saw a two-day meeting, again involving patients as equal stakeholders (after some gentle persuasion) on cross border Internet pharmacies. In addition to the two day consultation, there were discussion papers posted on the website to allow for public input and debate into this issue.

In addition to the above engagement of patients in meetings and consultations, many opportunities were presented to illicit patient feedback through web surveys during the year.

A distinct shift toward listening to patients is occurring at Health Canada but we aren’t there yet. Health Canada is moving away from discussing health policy issues with each stakeholder individually and moving toward broad stakeholder consultations. CAPA and other consumer groups applaud this initiative. It is a transparent and accountable way of engaging all stakeholders and leveling the playing field. Even The Common Drug (CDR) review, by not allowing consumer representation, has put the issue of engaging consumers in the forefront. I haven’t attended a conference or meeting this year where CDR hasn’t been criticized for this. They are taking note.

Although the inclusion of patients in Health Canada activities this year points to a door opening slowly to patient and consumer involvement, don’t be fooled. We must continue to push forward raising our voices until we are equal partners at all health policy decision-making tables.