To gauge a patent’s response to treatment, health care providers and researchers should consider a variety of factors: ethnicity, age, sex, gender, lifestyle, and more. Researchers at UC Davis found that less than 5 percent of trial participants are non-white. In a 2017 study by researchers at Massachusetts General Hospital, researchers discovered that Black participants were nearly 30% less likely to see an outpatient neurologist relative to their white counterparts, and Hispanic participants were 40% less likely. This was even after adjustment for demographic, insurance, and health status differences. According to Scott Gray, CEO of Clincierge, the elderly and pediatric patients are also under-represented in trials.
To accommodate diverse patients, Gray makes 3 suggestions:
When organizing clinical trials, we often struggle to recruit and retain patients. Poor adherence has a negative effect on outcomes and increases the cost of the study. In an article for Patient Focused Medicines Development, Guy Yeoman of AstraZeneca tells us that this is because “industry traditionally has been paternalistic in its interactions with patients.” According to Yeoman, the solution is simple: “to listen to patients, work with them to co-create solutions and clearly communicate in a mutually acceptable way and time.”
Pharmexec’s Patient-centric Care: It’s Not Just About the Medication Anymore discusses how companies are doing just that. Merck hosts a variety of educational seminars and patient input forums. Shire brings patients to their sales meetings. Pfizer only pursues therapies that are a “triple win”–for the patient, society, and Pfizer.
When working with diverse patients, this can prove difficult. Barri Blauvelt, CEO of Innovara, writes: “Non-English, semi-literate and immigrant patients are fearful of and … require a great deal of encouragement to respond to any survey.” Nevertheless, she maintains that it is necessary to gather feedback from diverse patients: “Without a focus on PCCQ, hospitals will continue to define their efforts and value improvements based upon feedback from highly motivated, highly literate Caucasian/English speaking patients.”
Eyeforpharma’s Mind Reading: Exploring the Psyche of the Patient explains that customized content over a variety of channels can improve patient adherence and outcomes.that in order to improve adherence and outcomes, programs must offer customized content over a variety of channels. For example, Sanofi is piloting tailored instructional videos for diabetic patients. These videos feature personalized clips of real people, environments, and foods. Lisa Egbuonu-Davis, VP of Global Patient-Centered Outcomes and Solutions, stresses the importance of this approach: “Food and language are critical expressions of culture, so the language we use when we talk about interventions and change, and the foods we suggest to people with diabetes to adapt their diet and lifestyle, need to be culturally appropriate.”
At FEND 2016, Sanofi discusses the importance of customized messaging with nurses from all over Europe. Sarah Cvach of Austria states, “Patient teaching does not mean that you stand in front and make lectures, but you sit with the patients at the same level.” Anne Felton, President of FEND, continues, “It is equally important that we recognize we are not in an island, and that this communication across culture, across borders, across race, across ethnicity is critically important.”
1. Measure, measure, measure
The National Academies – Health and Medicine Divison (HMD; formerly IOM), U.S. Food and Drug Administration (FDA), all have established guidelines on how to use patient-reported outcomes measures (PROMs) for the accurate assessment of patient-centered care. From these, the American Institutes for Research developed 5 PROM principles:
Thanks to mHealth, collecting PROMs has never been easier. Alex Butler, Partner at Open Health, asserts that “mHealth technology gives us the capacity to capture PROMs on a larger scale and in a truly real-world setting…reaching thousands of patients when we might in the past only been able to reach a few hundred.”
Need more PCCQ™ Strategies? Patient/Customer Insights and Value, a valuable aspect of PCCQ, is one of our core competencies in sales, marketing, and medical affairs.
