Updates for Patient Groups - June 2015

Five Years of Patient Engagement

When CADTH’s first Call for Patient Input was issued in May 2010, three patient groups answered: Arthritis Consumer Experts, Canadian Arthritis Patient Alliance, and The Arthritis Society. The groups provided insight and their unique perspectives into the CADTH Common Drug Review’s (CDR) assessment of Actemra.

Since then, we have received 297 patient input submissions to CDR, which have contributed to 142 final recommendations for the drug to be reimbursed, or not, by our publicly funded drug plans.

As well, since its inception, CADTH’s pan-Canadian Oncology Drug Review (pCODR) program has incorporated patient perspectives into the review reports and committee deliberations. As of March 31, 2015, pCODR has received 75 patient input submissions, allowing 53 of the 56 completed pCODR reviews to directly incorporate patient perspectives. In addition, approximately 63% of patient groups participate in the feedback on pCODR Expert Review Committee’s initial recommendations. As of March 2015, pCODR has issued 43 final recommendations.

We recognize the effort that goes into each patient input submission and thank each of the 114 unique groups for their many contributions to CDR and the 34 unique groups that have contributed to pCODR.

Over the years, we’ve heard from diverse groups: from tiny online forums and local community chapters to large national organizations. We’ve listened to groups representing patients and their families from all across the country. We’ve welcomed new groups, as they described what life is like with a rare disorder or have shared unique regional challenges.

During the first five years, 17 patient groups contributed five or more input submissions to CDR. These are:

Arthritis Consumer Experts

The Arthritis Society

Canadian Arthritis Patient Alliance

Canadian Council of the Blind

Canadian Diabetes Association

Canadian Liver Foundation

Canadian National Institute for the Blind

Canadian Skin Patient Alliance

Canadian Treatment Action Council

Consumer Advocare Network

COPD Canada

Gastrointestinal Society

The Heart and Stroke Foundation

Hepatitis C Education and Prevention Society

Multiple Sclerosis Society of Canada

Ontario Lung Association

Pacific Hepatitis C Network

We would also like to acknowledge and express our thanks to patient groups within the cancer control community for their contribution to the pCODR process, and their continued support to strengthen and improve the pCODR program so that we can work together to build leadership in health technology assessment (HTA) in oncology.

Learning and Changing

Engagement is a two-way process, and CADTH is better for it.

Since 2010, we’ve learned a great deal from patient groups and their members. We’ve listened to groups at various stakeholder feedback sessions, while participating in patient groups’ meetings, and through our Patient Community Liaison Forum, created in 2013.

We’ve explained how patient input is used in a series of short videos, as well as in a project tracking its use in 30 completed CDR assessments, the results of which were presented as a webinar at the 2015 CADTH Symposium. We now provide tailored letters to each group, highlighting which insights were most helpful to CADTH staff and expert committee members, after each CDR recommendation is made.

In response to patient groups’ requests, we’ve given groups more time to prepare their submissions, accepted individual patient and caregiver input when a Canadian patient group does not exist, and invited groups to comment on Requests for Advice to the Canadian Drug Expert Committee.

Partnering with the Canadian Cancer Action Network, the pCODR team have collaborated on a number of initiatives to promote and foster patient involvement in the HTA process, including:

  • Co-developing A Guide for Patient Advocacy Groups: How to Provide Patient and Caregiver Input for a pCODR Drug Review in 2013.
  • Collaboratively developing a Patient Engagement Collaboration Project funded by the Canadian Cancer Action Network. One of the initiative’s many goals was to recruit and fund a Patient HTA Navigator, Canada’s first “live” resource, for a period of six months, to assist patient advocacy groups in navigating the pCODR process.
  • Presenting an abstract on patient involvement in HTA processes and participating on an international panel of speakers.
  • Offering two workshops on how to make patient submissions to pCODR.

For the first time, CADTH provided travel grants to help patient groups attend CADTH’s annual symposium, along with other users and producers of evidence-based information on drugs and medical devices. Check out our short highlights video to see and hear what the conference was about, especially if you’re considering attending in Ottawa in April 2016.

To better integrate patient perspectives into our reviews, CADTH has held training sessions with staff and our expert committees, and now has a permanent qualitative researcher on staff to provide advice and support to the review teams.

Looking Forward

CADTH’s Strategic Plan 2015-2018 has nine objectives, one of which is to: “Embrace evolving successes in patient engagement practices in health technology assessment.” We’re identifying and embarking upon activities to both deepen and expand patient involvement across CADTH. In fact, building upon the model of patient input to CDR and pCODR, 12 patient groups have been involved in four CADTH Therapeutic Reviews since 2013, contributing to research outcomes and insights, and providing specific feedback on draft reports and recommendations.

We’ve engaged a patient expert to assist with the delivery of CADTH’s first Scientific Advice. And we will be using a range of different patient engagement mechanisms to integrate patient perspectives into our medical device and procedure work.

Finally, we’re continuing to share our experiences — what has worked and what hasn’t — with health research communities, in Canada and internationally.