Canadian patients show their power
October 13, 2018
Tell me what to do, doctor. This attitude made perfect sense in the pre-digital era, when patients had little access to information. Today’s patients wear health apps on their wrists and trade health tips online.
They seek greater control over their health—and are willing to take responsibility for it.9
These winds of change have blown through the world of medical research, and today’s clinical trials routinely feature “patient-reported outcomes” among their endpoints.10 The pharma industry has also taken note: while compliance still requires the industry to keep some distance from patients, many pharma manufacturers now communicate more directly and authentically with patients in advisory board meetings and clinical trials.11
Here are a few examples that showcase this new era of patient engagement—right here on Canadian soil. Such initiatives are changing the landscape of healthcare and giving fresh opportunities for pharma stakeholders to improve the patient experience.
1. Patients reaching patients:
Welcome to Sickboy, a podcast series that aims to dismantle the stigma of living with chronic disease—using humour, silliness, and the occasional swear word. The brainchild of a young man with cystic fibrosis and two of his friends, Sickboy has touched a wide and varied audience. In one of the podcasts, a cranked-up guitar riff segues into a Q&A with a 24-year-old woman who describes how, on some days, her juvenile rheumatoid arthritis makes her feel 80. In another, a woman with a brain tumour talks about the healing properties of weed while conceding that “nobody is in control of this.”
This series is too good to miss. New to Sickboy? We recommend starting with these episodes:
- It’s either Hodgkin’s or it ain’t: Hodgkin’s lymphoma.
- Feeling like I’m 80: Juvenile rheumatoid arthritis.
- The birds & the bees & a brain tumour.
2. Patient-centric innovation:
Remember house calls? Thanks to a company called Mediseen, they’re back in style—with a new twist. A cloud-based digital platform enables patients to access quality health care in their homes or offices, rather than commuting to clinics and sitting in waiting rooms. For people who sometimes have trouble walking across the street—like the company’s founder, who lives with Crohn’s disease—the service is pure gold. Hundreds of health providers have already signed on. Along similar lines, a service called GetMaple lets patients chat with Canadian doctors online, as well as get prescriptions and notes excusing them from work.
3. Data power:
Recognizing that “patients will drive the future of health innovation,” a company called Self Care Catalysts has set itself the dual goal of promoting self-care and collecting patient data to support drug research. The company’s mobile platform serves as a one-stop health-tracking system that yields real-world insights for physicians and industry.
In tandem with these efforts, patients have gone public, crafting YouTube videos describing their health challenges, evaluating their doctors online, and posting testimonials of their treatments. This trove of information makes it easier than ever for industry to find out what patients actually want—an invaluable asset when designing a PSP. And another thing: younger patients love technology.12 Use it or lose them.
References
9. The Commonwealth Fund (2012), International perspectives on Patient Engagement: Results from the 2011 Commonwealth Fund Survey.
10. Deshpande PR et al. Patient-reported outcomes: A new era in clinical research. Perspect Clin Res 2011; 2: 137–44.
11. Palmer K, Tepper J. Patient engagement a new frontier for drug makers. Healthy Debate, April 17, 2017. http://healthydebate.ca/2017/04/topic/pharma-patient-engagement
12. Healthcare system needs to catch up to the requirements of the Google Generation. Canadian Medical Association, August 14, 2018. https://www.cma.ca/En/Pages/Healthcare-system-needs-to-catch-up-to-the-requirements-of-the-Google-Generation.aspx