Patient-centred initiatives you need to know about
October 17, 2020
The patients are speaking and the healthcare system is listening. This sampling of initiatives, either led by or focused on patients, highlights the rising chorus of Canadian patient voices and the increasing prominence of patient data within the specialty medicine ecosystem.
One-stop shop: Drug Access Canada is born19
As befits its name, Drug Access Canada (DAC) is all about patient access to specialty treatment, focusing on Drug Access Navigators to get the job done. Having watched the profession come into its own over the past decade, DAC determined that navigators increase patient satisfaction and take the administrative burden off health providers so they have more time to care for patients. The group’s database keeps health professionals abreast of currently available specialty medications and corresponding patient support programs (PSPs), at no cost. A task force to improve and streamline the Canadian PSP ecosystem is in the works.
Uncommon leadership: CORD steps up training for patients with rare diseases20,21
Many people become advocates in the trenches, often as a result of a major life challenge—but advocacy skills can also sharpen through instruction. To this end, the Canadian Organization for Rare Disorders (CORD) launched Co-Creating Highly Effective Patient Partnerships, a leadership training program geared to patient advocates, in the fall of 2020. Featuring international speakers and interactive sessions, the 10-week course covered the contribution of patients to rare drug discovery, the role of the patient at each phase of the drug lifecycle, the importance of patient-relevant outcome measures, and patient engagement in the regulatory process.
Calling the shots: Patients set the agenda in the Save Your Skin summit5
In late 2019, for the fourth consecutive year, the Save Your Skin Foundation and other patient groups hosted an annual event called Patients Redefining Healthcare Summit (formerly Drug Pricing Policy Summit). Over the years, this meeting of minds has spawned several working groups and projects focused on PROMs and patient data. The 2019 meeting took a deep dive into value-based healthcare (VBHC) and patient-reported outcome measures (PROMs), with indigenous health and social determinants of health receiving special attention. In a breakout session, participants explored strengths and gaps in population- and disease-specific PROMs.
A large pond to swim in: CHORD pools Canadian cancer data22
The Cancer Health Outcomes Research Database (CHORD) consortium exists for one reason: to collect and share cancer data for research. This national initiative, which brings together cancer researchers across the country and includes data provided by PSP providers, is proving especially helpful in research on rare and complex tumors, for which single institutions may lack adequate sample sizes. The effort has borne fruit in several research initiatives, including a 2018 study to help predict survival in hepatocellular carcinoma (HCC) patients treated with sorafenib. The database enabled the researchers to estimate the prognosis of HCC patients using five different staging models.
References:
5 - A dose of reality: patients redefining the future of healthcare in Canada. Summary report of the 4th annual summit, 2019. https://saveyourskin.ca/wp-content/uploads/Patients-Redefining-Healthcare-Summit-2019-Report-EN-Final.pdf
19 - Drug Access Canada. Alan Birch slide presentation.
20 - Wong-Rieger D. Co-Creating Effective Patient Partnerships, LinkedIn announcement, September 9, 2020. https://www.linkedin.com/posts/durhane-wong-rieger-9671878_co-creating-highly-effective-patient-partnerships-activity-6709203833488248832-pEcB/
21 - Patient Partners Leadership Training: course overview. CORD. http://www.raredisorders.ca/content/uploads/Patient-Partners-Leadership-Training-Promo_abbrev.pdf
22 - Samawi HH et al. Prognosis of patients with hepatocellular carcinoma treated with sorafenib: a comparison of five models in a large Canadian database. Cancer Med 2018; 7: 2816.