Kathryn Larouche Imler is a former registered nurse and has suffered from ME/CFS & FM for approximately 17 years. Bart Imler is Kathryn’s primary caregiver, and has a technical background in computers, telecommunications and electronics.
The Canadian Association for Drugs and Technology in Health (CADTH) is an independent non-profit organization (created by federal, provincial and territorial governments) that works to provide a coordinated approach to assessing health care technologies (including drugs), and to provide information on health care technologies to health care decision makers.
CADTH recently held its annual symposium in Ottawa. The theme of the symposium was “Measuring Value in Theory and the Real World”. Thanks to CADTH’s generous sponsorship of Patient Group Representatives, and with the facilitation and assistance of National ME/FM Action Network President Margaret Parlor, we were able to attend this symposium and participate in several sessions and events.
Initially we were a little unclear on exactly what role we might play at the symposium. CADTH, Health Technology Assessment (HTA), and the theme of “Measuring Value” were all new to us, and as we investigated we weren’t sure how our personal objectives as patient representatives would align with the goals and objectives of CADTH and the symposium theme. We questioned amongst ourselves whether we could make a positive difference. As the symposium progressed, we found that our fears were unfounded.
One of the most exciting and gratifying ways that we were able to make a positive difference was through direct contact with other symposium participants and speakers. We had very satisfying discussions with a diverse range of people, and were able to provide information (pamphlets, fact sheets and personal experiences) on ME/CFS & FM to several people.
One of the most rewarding moments during the symposium came during a discussion with a patient representative/caregiver who is involved with Alzheimer patients. He related the story of a close friend who has been diagnosed with Bipolar Disorder. He described several of her symptoms (fatigue after exertion, chronic pain, etc.) that were unexplained by the diagnosis. We provided some literature on ME/CFS and FM that he felt may explain many of his friend’s symptoms, and he was excited to forward the information to her.
During the three days of the symposium we attended two workshops, two plenary discussions, five presentations and oral discussions. The various sessions covered a wide range of topics, including rare diseases, health technology assessments, patient engagement, and the ongoing opioid crisis.
We were able to participate directly in several of the scheduled presentations. Kathryn contributed personal experiences with over-prescription of opioid medications during a presentation on CADTH’s response to the opioid crisis, and Bart provided a question on increasing the level and quality of patient participation to the plenary panel discussing meaningful stakeholder engagement. We also had an opportunity to talk directly with several presenters during and after the presentations.
In summary, we found the symposium to be very interesting, and it was an excellent opportunity to interact directly with a wide spectrum people from the health industry. We were able to provide information about ME/CFS & FM to several individuals, and to contribute to several discussions in a meaningful way. Once again we would like to thank CADTH and the National ME/FM Action Network for their sponsorship and for allowing us to participate.