Patient Engagement: The New Normal

Today more than ever, pharmaceutical companies are increasingly dependent on collaboration with patients. Companies rely on patient recommendations across the spectrum of drug development – from clinical trial recruitment, to health literacy toward improving diagnosis, to how patients value medicines, to actual product use and everything in-between. Moreover, companies want to hear from patients directly, as their stories are powerful motivation for those who view themselves as working for the benefit of patients day in and out. This level of patient engagement is the new normal.

But, while biopharmaceutical companies are certainly doing more when it comes to patient engagement, we wondered—How do patients and their physicians perceive these actions? Does increased patient engagement improve how patients and others view pharmaceutical companies? And, do patients actually want to be engaged in these ways? Such questions are shared by industry executives and patient advocates alike, as evidenced by conference agendas dominated by this topic and prolific social media conversation. To explore these questions, APCO Insight conducted a poll* among the “attentive public” and health care providers (HCPs), and the responses suggest ongoing opportunities to improve collaboration between pharmaceutical companies and patients:

  1. More health care interaction means more skepticism about pharmaceutical companies.
    While the majority of the “attentive public” (68%) believe companies are reflecting the needs of patients in what they are doing today, views are more skeptical among those who interact more frequently with the health care system. Among the attentive public who identify as a patient or a caregiver, more than half believe pharmaceutical companies do not reflect the needs of patients. And, nearly two-thirds of health care providers agree. This suggests that more immersed people are in health care, the more they disapprove of pharmaceutical company actions—a significant opportunity for improvement.Needs of Patients Graphic
  2. There is a strong desire for patients to have a greater say.
    A strong majority believe patients should play a significant role in how pharmaceutical companies operate. Nine-in-10 attentive public see a significant role for patients – as do 2-in-3 HCPs. And, the various roles patients can play—from pricing medicines to testing for safety and effectiveness to investing in research; and, too, from advocating for public policies to creating information materials about how to use medicines to informing others about medicines – are all considered important to 75% or more.
    attentive public believes patients should play a role
  3. Concerns over pricing impact thoughts about patient engagement. When asked to rank what areas the patient voice should play a role, the greatest need is about how pharmaceutical companiesprice medicines. Notably, most emphatic on this point are those who are currently taking medicines.
  4. Engagement in R&D remains the other priority for patients.
    In addition to their voices heard in pricing decisions, patients also view their role in the R&D process as crucially important. This includes their involvement in clinical trials—testing medicinesfor safety and effectiveness—as well as in having a say in how and where companies invest in research for new treatments. Conversely, engagement activities like information sharing and advocacy, although still viewed as important, are less of a priority.
  5. Patients are ready and willing to partner.
    Despite their skeptical views about how the industry reflects the priorities of patients, patients themselves are ready and willing to partner with companies to ensure their voices are heard. If given the chance, nearly all say they would partner with pharmaceutical companies to reflect the views of patients or caregivers. The public are particularly motivated – with 3 in 5 saying they are “very likely” to work together with companies; 2 in 5 HCPs express the same.
    partner with pharma

It has been clear for some time that patient engagement needs to be infused throughout pharmaceutical companies’ communications and actions. Evidence suggests that the public believes companies are doing this well, but views of those most experienced with the health care system indicates there is still room for improvement. Encouragingly, patients are incredibly willing and eager to engage with pharmaceutical companies. This is an important assurance for the future of our health care system – the virtuous cycle where patients and companies work together to explore, test, inform and access medicines.

* The APCO Insight survey was conducted among 158 health care providers and 94 attentive public (who are screened among the general public based on their attention to news and health care topics and civic engagement, like attending public meetings, sharing their opinions, donating money or joining civic organizations). The survey was conducted between November 16, 2017 and February 9, 2018.