I am a born and raised Canadian now living and working in the UK. Having been in the UK for over two years, I tend to draw comparisons between the UK’s National Health Service (NHS) and the Canadian health system. Before I start here with my commentary, I want to point out that, despite its imperfections, I am quite happy with our Canadian system. I have even dedicated a part of my career to improving it after working as a healthcare consultant in Canada for many years. Of course, comparing the NHS with Canada’s system is not exactly comparing apples to apples, but there are a number of similarities (tax-based, publically funded systems) that make it an interesting mental exercise on a Sunday morning over a coffee.
As most of us know, health care dollars are usually in short supply and become increasingly scarce in difficult economic times. As a health economist, I have been trained to use economic evaluations to assess how such scarce resources can be allocated most efficiently.
It is most often the case that economic evaluations are incorporated in health technology assessments (HTA), which is a tool used by jurisdictions globally to systematically analyze the short and long term consequences (e.g., social, economic, ethical, legal) of health interventions. In Canada, the Canadian Agency for Drugs and Technologies in Health (CADTH) oversees our national HTA process, the Common Drug Review (CDR). The outputs of HTA, including the CDR, are then used by decision makers to determine which health intervention should be introduced, and in some cases paid for, in the system.
Recently, I have taken a bit of an interest in how jurisdictions capture the nebulous “social” and “ethical” dimensions in HTAs. One way, used by the UK, has been to involve the public in HTA processes. However, the importance and the value of engaging the public in national HTA is a widely debated and contentious issue. Some key arguments for public engagement include the need for transparency, accountability and equity. Conversely, the key challenges cited include a lack of awareness of such national processes by the public, resistance from HTA agencies, lack of budget and potential conflict of interests.
The CDR has recently introduced a couple of initiatives to engage the public, which I believe is a good start. The main public engagement mechanism is the Patient Input Initiative, established in 2010. Under this initiative, patient groups (organizations that are registered to represent patient populations) have the opportunity to submit evidence on patient experience around current treatments (e.g., effectiveness, side effects) and thoughts on the new intervention (e.g., potential improvements in quality of life, willingness to accept side effects). In theory, any patient evidence that is submitted is then considered when making final CADTH recommendations.
Since the start of the initiative, the percentage of appraisals conducted for coverage decisions that included patient group input was 48% (in an analysis of the data until mid-August 2012). The lack of engagement from patient groups on behalf of the appraisals highlights some of the key challenges (e.g., lack of knowledge from patient groups). Furthermore, a review of the documents shows that some indications received more public responses than others (for instance, epilepsy received more than twice as many responses per submission than most other indications). This may potentially result in some under-funded patient groups feeling disempowered.
When the public engagement mechanisms used in the CDR process are compared to those of the UK’s National Institute for Health and Care Excellence (NICE)’s technology appraisal process, it is clear that NICE engages more of the public in more ways. Just as one example, anyone in the UK is able to submit requests for technology appraisals and can make recommendations on draft assessment reports. Neither is the case in Canada where manufacturers submit requests and there is no open feedback mechanism on draft reports.
I believe NICE, with its mandate to improve outcomes for people using the NHS through evidence-based guidance and advice, can be used for comparison for a few main reasons:
1. They currently share similar principles of and goals for public engagement (albeit, NICE declared these goals much earlier than CADTH)
2. They are one of the most sophisticated attempts to integrate HTA into the decision making process
3. Both NICE and CADTH are agencies that make centralised assessments in environments where there is decentralised funding (though the UK is currently undergoing reforms and the role of NICE may change in the future). For instance, in the UK, NICE’s negative appraisals can still be funded regionally if there is a local need. This is partially similar to the CDR process: although the assessments are made centrally with CADTH, provinces will have the final decision whether to fund the treatments from the public purse
Based on NICE’s practices, there are some public engagement interventions that may potentially lend themselves to more effective and fairer public engagement strategies. For instance, NICE systematically assesses whether further public engagement is needed and warranted through its Patient and Public Involvement Programme (PPIP).
Previous evaluations of patient and carer involvement in the development of NICE clinical guidelines have shown that it is possible to engage the public as effective members of guideline development groups. Evaluations have also recommended how the public engagement process can be refined or enhanced (for instance, evaluations have recommended that the PPIP routinely seek other potential sources of information on the perspectives of the target population or specific subgroups e.g., by inviting community members to give presentations, seeking testimony from experts).
These evaluations show that public engagement in national processes is possible and effective. To this end, I believe that it is important that the CDR assesses whether implementing a similar PPIP type programme would be beneficial in the context of Canada. Undoubtedly, there have been a lot of resources already dedicated to the establishment of the patient input initiative. Without a systematic mechanism in place to monitor and evaluate the effectiveness and fairness of this initiative (or any future public engagement initiatives), it can be argued that these resources could be better used elsewhere.
Overall, I believe that policies that encourage greater engagement of the public are a good thing. By doing so, decision makers will better understand the values that are held by its citizens in order to make difficult decisions on health technologies and priority setting. However, the value of doing so will naturally vary between jurisdictions; each one must have dedicated resources and the political will to understand this value in their context. Moreover, in order to be most effective, monitoring and evaluating public engagement strategies should be a high priority for policy and decision makers as well as researchers, given the paucity of empirical evidence available on this topic.