Patients are talking. Are we listening?

October 13, 2018

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Today’s patients are connected via apps, publishing blogs, answering surveys, and ensuring their voices are heard. Their words are a mirror to our industry, showing us what we’re doing right—and what’s missing.

In a 2018 survey by the Canadian Partnership Against Cancer (CPAC), up to one in five surveyed cancer patients reported that nobody discussed different treatment options with them.1 Along the same lines, up to 25% maintained their health providers did not take their travel constraints into account when planning for treatment, and similar percentage were underwhelmed with the emotional support they received during outpatient cancer care.

At the same time, the industry is going through some turbulent times, with rumblings of a national pharmacare program2 and increased government oversight. The Patented Medicine Prices Review Board (PMPRB) is working on drug pricing reforms3,4 that, while well intentioned, may discourage innovation. Recognizing the need to contain costs, specialty drug manufacturers face difficult choices about what to include in their patient support programs (PSPs), which raises concerns that patient experience could suffer.

We cannot let this happen. Satisfied patients keep the specialty pharmaceutical industry healthy and vibrant. As one analysis has found, “pharmaceutical companies with the best results regularly monitor, evaluate and optimize their programs through ongoing research with key stakeholders”5—which should, first and foremost, include patients.

In fact, many in the industry are making it their business to put patients first. Abbvie Canada, for instance. Not only have they incorporated Care Coach Calls (phone calls to patients by trained coaches) into their PSP, but they’ve measured their impact. As it turns out, patients who received the calls were 72% less likely to stop treatment—an impressive figure by any standard.6

In support of this approach, a recent webinar including PSP leaders from across the globe on “the next-generation PSP” predicts that, while patient care and services are currently fragmented, “as data becomes richer and more available, the care and delivery to patients will be improved.”7

We agree. Data is key, real-world data is even better, and PSPs give us a perfect opportunity to discover what makes our patients tick. Here’s a thought: what if we simply asked them? What if we built patient experience questionnaires into our processes for managing specialty drugs? It’s only through front-line feedback from patients that we can align our PSPs with their needs.

Here’s another thought for our rapidly changing times: it’s no longer good enough to think about patients. We need to think like patients. Are we up to the challenge?


References

1. Living with cancer: a report on the patient experience. Canadian Partnership Against Cancer 2018. http://www.systemperformance.ca/report/living-with-cancer-patient-experience/?utm_source=referral&utm_medium=corp-press-release&utm_campaign=patience-experience/

 2. Government of Canada launches Advisory Council on the Implementation of National Pharmacare. Health Canada, June 20, 2018. https://www.newswire.ca/news-releases/government-of-canada-launches-advisory-council-on-the-implementation-of-national-pharmacare-686043961.html

3. Patented Medicine Prices Review Board (PMPRB) explores possible changes to how it conducts business. PMPRB News, Dec. 11, 2017. http://www.pmprb-cepmb.gc.ca/news.asp?a=view&id=202

4. New PMPRB rules could impact patients with rare diseases: study. Benefits Canada, August 30, 2018.

5. Evans H, Martini J. Patient support programs that deliver results. ZS 2015. https://www.zs.com/-/media/files/publications/public/15---44-ph-mar-wp-patient-supportcreate-f.pdf?la=en

6. Marshall JK et al. Impact of the Adalimumab Patient Support Program's Care Coach Calls on Persistence and Adherence in Canada: An Observational Retrospective Cohort Study. Clin Therapeut 2018; 40:415-29.

7.  Simms P. Eye for Pharma webinar: the next-generation PSP. http://1.eyeforpharma.com/LP=21960?utm_source=Webinar%20recordings&utm_medium=Email&utm_campaign=4920%20Patient%20Summit%20USA&utm_content=Webinar

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