The path to patient engagement does not always run smoothly. Michelle Mujoomdar, director of scientific affairs, Canadian Agency for Drugs and Technologies in Health (CADTH), outlines how the agency has learned from its endeavours in this area
CADTH started our patient engagement activities in 2010. At that time, it was limited to one program and now we engage with patients across all programmes. How this happens varies from programme to programme for particular reasons (e.g., time constraints), but the intent is there; we want to hear from patients at the very beginning of any project. The patient perspective now fundamentally shapes our work.
CADTH has recently launched a Patient and Community Advisory Committee. This is a CADTH committee that will advise us not at the project/operational level, but rather at the strategic level, and will help us provide a roadmap for patient engagement.
Patient engagement involves both challenges and opportunities. One is adequate resources; the patient engagement team at CADTH is relatively small, though growing. There’s always a challenge of having enough capacity to reach out to many groups. We want to build relationships rather than simply have interactions that are transactional in nature. Relationships take time and need trust, authenticity, and respect. My colleagues and I are committed to CADTH striving for meaningful engagement – not simply a tick-box exercise.
Another challenge would be trying to seek a diversity of perspectives and to engage with communities that are harder to reach. An obvious opportunity afforded through greater diversity is the inclusion of perspectives that might otherwise have been missed. Greater diversity reflects the Canadian population and as a pan-Canadian organisation, that is important to us.
We have learned that we need to be open to new expectations and that there may be more than one path to the desired outcome. Here I can draw on a recent example. In July 2019, CADTH launched a Patient and Community Advisory Committee. At our second meeting, but first face-to-face meeting, we had arranged the agenda in a way that we thought would allow us to collectively reach the desired outcome, but we found that the committee wanted and needed to spend more time learning foundational information about CADTH’s ways of working and work programmes. We needed to be flexible to meet their needs. Through the committee’s clarifying questions and reflections during small-group and plenary sessions, we gained even greater insight than we anticipated – and this was only their second time meeting
Hearing someone share their lived experience can be an emotional exercise. It gives us a much-needed perspective and can be very humbling.
Our patient engagement work is a dynamic entity, but it’s important to not throw away everything we’ve learned from patients and patient representatives over the years – we want to build on it.
We’re very engaged with the international community – projects like PARADIGM and also other work through the International Network of Agencies for HTA (INAHTA) and Health Technology Assessment International (HTAi). These fora offer the chance for us to keep up-to-date on activities at HTA agencies in other countries. It’s important for us to consider patient engagement practices in health, but outside of the HTA space – what can be learned and transferred to HTA.
Are you a Health Technology Assessment body? To help you embed patient engagement across your organisation, consider the co-created Patient Engagement in Early Dialogues Tools and resources for HTA bodies*. In addition to this, Patient engagement in medicines development: Recommendations on how to find the right match for the right patient engagement activity* could support the activities when you are reaching out to patient partners.
* All PARADIGM tools will be released during the summer of 2020. Follow the information on our website. The final names of each tool might change.
This is the second article of the mini-series of six articles. Find the other articles from here.