We need a patient-centered approach to patient care and research – now.

The New York Times published an important article today, “They Lost Their Legs. Doctors and Health Care Giants Profited,” highlighting the need for careful attention to the patient experience in the treatment of peripheral artery disease, also known as PAD. In May, ProPublica published a groundbreaking story about the problem: In the “Wild West” of Outpatient Vascular Care, Doctors Can Reap Huge Payments as Patients Risk Life and Limb. PAD is a potentially devastating and under-recognized vascular disease that affects circulation in the lower limbs and can result in high rates of amputation and death when not treated mindfully, with the patients’ well-being always at the forefront of considerations. As the New York Times so powerfully points out, many procedures are unnecessary or dangerous for patients, although often profitable for others: “more than a decade of medical research has shown that the vast majority of people with peripheral artery disease have mild or no symptoms and don’t require treatment, aside from getting more exercise and taking medication. Experts said even those who do have severe symptoms … shouldn’t undergo repeated procedures in a short period of time.” But while potentially devastating for patients, repeated procedures can be lucrative for those that do them and for the device industry.

This systemic abuse highlights why education and awareness are so vital, and why it is essential that we move toward a more patient-centered approach to health care. Education, while not the only answer, is a vital part of the solution.

Education for patients enables patients to navigate the complex medical system with more control over their own health outcomes. Having options matters. Knowing and understanding what those options are – especially when encountering a disease that is rarely talked about and usually gets little press is hard: medical information can be overwhelming, opaque, and frightening when the possibility of losing a limb is presented. This is why we have materials that are designed with and for patients, like health literacy pamphlets and interactive learning hubs, and why patient-led fora such as this Facebook group for PAD walking support are useful. Education for medical professionals matters too because it helps medical professionals across the care spectrum – from general practitioners to health care community workers in minoritized and rural communities – learn about warning signs for PAD, identify access issues and social determinants of health that impact how patients engage with their own health care, and focus on patient quality of life needs and concerns. This is why this PAD/CAD learning hub was developed and is available for free. The data is clear that there are devastating outcome disparities for black and brown patients and other minoritized groups relative to wealthier, white counterparts. This too must change. Education is a path to accountability.

For some people with PAD, medical interventions will be needed; for many others, lifestyle changes such as sustained walking will address immediate needs. For most, ongoing management of their care with thoughtful, caring, and knowledgeable medical professionals – of which there are many and can be so many more – will be needed. For all, knowledge is power. Thank you to the New York Times, ProPublica, and others for bringing attention to PAD and the abuses that an unhealthy healthcare system can reap.

It is time for a collective re-think. The interests of patients must be at the forefront of care, and incentives that thwart a patient-centered approach must be eliminated. Realizing a patient-centered ecosystem is a critical priority for today’s world. We are on board and hope you will join us.

In health,

Isabel Bjork, CEO
Foundation to Advance Vascular Cures