NEWS

The increasing focus on patient involvement in medical decision-making and clinical research is reshaping healthcare and research landscapes. Organizations like Women As One, Global Heart Hub, and WomenHeart are leading the charge in advocating for women’s heart health, fostering collaboration between patients, physicians, and policymakers to drive systemic change and improve outcomes.

The past 15 years have seen a notable rise in the direct inclusion of patients in their own medical decision-making and clinical research participation. Terms like shared decision-making and value-based care have increasingly become part of organizational policies and regulatory frameworks around the world. The US News and World Report national hospital rankings, coveted among top institutions, prominently factor in patient satisfaction scores and a broad variety of tools and guides are now available to support and encourage healthcare systems to measure patient experience.

The push to bring patients more directly into their care has been mirrored in clinical research development. For example, the United States created the Patient-Centered Outcomes Research Institute (PCORI) as part of the 2010 Patient Protection and Affordable Care Act. PCORI seeks to empower patients and others with actionable information about their health and healthcare choices by funding comparative effectiveness research. The US Food and Drug Administration (FDA) has issued guidance documents supporting patient involvement and engagement at all levels of clinical trial design and execution, and just recently launched the Patient Engagement Collaborative (PEC) with the Clinical Trials Transformation Initiative (CTTI) as an independent means of soliciting patient feedback. The PEC is facilitated by federal law to foster patient participation and incorporate patient experiences in the regulatory process and is modeled after the European Medicines Agency’s (EMA) Patient’s and Consumer’s Working Party.

Within the context of this growing ‘patient power’, the relevance of patient education and advocacy groups has also naturally grown. These groups, national, international and homegrown, represent not only a well from which to find patients to participate in activities such as research and community education but are also platforms from which patients have the opportunity to advocate for what is important to them, identify where they see opportunity for improvement and where they see systemic and societal shortcomings.

In recent months, Women As One has had the opportunity to engage more actively with several prominent patient organizations. In April, we attended a roundtable in Madrid hosted by the Global Heart Hub on the topic of ‘Late, Missed, and Misdiagnosis of Heart Disease in Women.’ Global Heart Hub, a relatively new nonprofit, serves as a global voice for those affected by cardiovascular disease. It is an organizing body for national and disease-specific cardiovascular patient organizations worldwide, representing a significant opportunity to reach these patients. The roundtable provided a unique platform for patients, physicians, and similar organizations to discuss proactive measures for improving women’s heart health, resulting in the publication of this report.

Among the organizations at the roundtable was WomenHeart: the National Coalition of Women with Heart Disease, the first and only patient-centered organization in the United States dedicated to supporting women with or at risk of developing heart disease. WomenHeart has created successful models for patient support, speaker development, and hospital engagement. In May, Women As One collaborated with WomenHeart in Washington, DC, during the “Day on the Hill” event supported by Medtronic Vascular. Together, we hosted a breakfast panel discussing the importance of increasing funds for research focused on women with heart disease, highlighted by patient stories. The day concluded with several meetings with members of the United States Congress, advocating for higher prioritization of women’s health.

As medical and research communities continue to increase their efforts to include patients within their respective aims to advance science and improve patient care, Women As One sees an important chance to participate and advocate for women at all levels. As heart disease continues to be the number one killer of women worldwide, and as evidence mounts in support of improved patient outcomes through physician-trialist-patient gender concordance, we know that our mission of uplifting talented women physicians can have a genuinely positive impact on patient care. Critical to doing this will be our continued collaboration with organizations such as Global Heart Hub and WomenHeart, as we all pursue innovative ways of improving medicine at the workforce and patient care levels.

Written by Rebecca Ortega, MHA, Chief Innovation Officer at Women As One