Improving Access and Quality of Health Care in the United States: Shared Goals Among Patient Advocates
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LETTER TO THE EDITOR
Improving Access and Quality of Health Care in the United States: Shared Goals Among Patient Advocates Elisabeth M. Oehrlein1 · Jason Harris1,2 · Alan Balch3 · Pat Furlong4 · Eric Hargis5 · Mary Woolley6 · Eleanor Perfetto1,7
© The Author(s) 2020
Dear Editor, Dissatisfaction with past research and health care decision making that is not relevant or responsive to patient needs and preferences has led to a movement toward patient centricity in the US and around the world [1]. ‘Patient centricity’ and ‘patient centeredness’ broadly refer to any process, program or decision focused on patients in which patients play an active role as meaningfully engaged participants (not simply as study subjects) [2], and ‘patient-centered health care’ is defined as “care that is respectful of and responsive to individual patient preferences, needs, and values in the context of their own social worlds [3].” Patient centeredness is created by engaging, informing, and actively listening to people with chronic conditions at every point of contact—from the research bench to the bedside and everywhere in between [4]. This shift toward patient centricity has been exemplified by patient groups, professional organizations, as well as bodies such as the Patient-Centered Outcomes Research Institute (PCORI), who emphasize the importance of patientprioritized research questions in their funding decisions, and * Elisabeth M. Oehrlein [email protected] 1
National Health Council, 1730 M St, Suite 500, Washington, DC, USA
2
Lupus Foundation of America, Inc., 2121 K Street NW, Suite 200, Washington, DC, USA
3
Patient Advocate Foundation, 1100 H St NW, Washington, DC, USA
4
Parent Project Muscular Dystrophy, 401 Hackensack Avenue, 9th Floor, Hackensack, NJ, USA
5
Colon Cancer Alliance, 1025 Vermont Ave NW Suite 1066, Washington, DC, USA
6
Research!America, 241 18th St S, Arlington, VA, USA
7
Department of Pharmaceutical Health Services Research, University of Maryland Baltimore, 220 Arch Street 12th floor, Baltimore, MD 21201, USA
the US Food and Drug Administration’s evolving patientfocused medical product development initiatives, such as the Patient-Focused Drug Development (PFDD) initiative and the Patient Engagement Advisory Committee (PEAC) for medical devices [5–7].
1 Uptake of Patient Centricity in Research and Health Care Delivery is Uneven Despite calls for patient centricity across every sector of the health care ecosystem, uptake has been uneven. Although segments of the research and medical product development communities have fully embraced patient centricity, others have yet to systematically adopt patient engagement. For example, the US Food and Drug Administration recently released the first of four Patient-Focused Drug Development guidances [8]. The Council for International Organizations of Medical Sciences (CIOMS), known for their leadership in pharmacovigilance, established an Expert Working Group advancing patient involvement in drug development and safe use [9, 10]. However, l
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