Inaugural State of Patient Empowerment Report Unveils Chasm Between Patients’ Ability to Act on their Life Goals and the Delivery of Care in the United States

Outcomes4Me Inc., the developer of a personalized evidence-based cancer navigation platform, released today the 2022 State of Patient Empowerment Report. The report, developed in partnership with the HLTH Foundation, Boston Consulting Group (BCG), and Publicis Health, summarizes the results of a first-of-its-kind study aimed at defining and measuring the state of patient empowerment–patients’ ability to act on their health and life goals in the context of diagnosis, treatment, and recovery–in the United States.

The study identifies four prerequisites for patients to be able to take a proactive approach to their care and, hence, be empowered:

Results reveal that breast cancer patients are on the whole not fully informed of the evidence-based treatments that could influence their care. Many patients lack necessary access to a consultative care team that shares timely and relevant information about treatment options, and the integration of patient goals is low. These results are likely applicable to other patient groups given similarities across serious illness, including: the complexity of diagnosis, the number of treatment options, the length of treatment, and disruption to patients’ lives. Key study findings include:

The majority of medical institutions remain non-compliant with individuals’ right under HIPAA to access medical records within 30 days

Access to, and collaboration with, a trusted care team is not the reality for many patients

Doctors do not systematically present patients with the latest, evidence-based treatment options and disparities exist across socioeconomics, ethnic backgrounds, and age

Patients’ preferences are not systematically discussed during the delivery of care

“We cannot change what we do not measure—which is why this effort is not only critically important, but also just the beginning of our multi-year commitment to help evolve the healthcare system and re-center it around the patient,” said Maya R. Said, Sc.D., Founder and CEO at Outcomes4Me. “These results point to clear opportunities for improvement and, unless we collectively start addressing these issues, we risk that the rapid pace of cancer innovation will drive poorer outcomes and exacerbate disparities. All of us deserve a fair chance to beat cancer. I am deeply grateful to all the patients who contributed to this study: you have our commitment that we will not rest until we ensure every patient, wherever and whomever they are, gains the power they need to conquer their illness and achieve the best possible outcome.”

“Providers are focused on patient engagement, which tends to focus on how patients make use of the tools provided to them,” said Janna Guinen, Executive Director of the HLTH Foundation. “Integrating the aims and measures of empowerment will help patients to take control, make more informed healthcare decisions, and align care delivery with patients’ health goals and value systems.”

“As a survivor of a rare cancer myself, I understand the scanxiety that cancer patients experience,” said Susan Manber, Chief Patient Officer, Publicis Health. “I am privileged to have a productive, accessible relationship with my care team–who always helps me to understand my health information. The heartbreaking data from this study proves that so many other patients cannot say the same.”

“Care navigation is difficult, and we know anecdotally from our own life experiences that patients are tasked with taking on too much,” said Nate Beyor, Managing Director & Partner, BCG. “But anecdotes do not lead to the meaningful change that we need to see. That is why we all came together to define patient empowerment and measure it, for the very first time, so we can understand patient empowerment at its baseline, put programs in place to improve it, and measure it year over year.”

The full report is available at www.outcomes4me.com/empowerment2022.

Outcomes4Me fielded a direct-to-consumer, online survey, recruiting patients via Facebook advertising and Outcomes4Me’s own database. The survey was active between October 13, 2022 and November 1, 2022 and yielded 1,828 responses, with 15% coming from the Outcomes4Me platform and 85% representing non-users of the Outcomes4Me platform. The company augmented survey data regarding medical institutions’ compliance with patient-directed medical records requests with anonymized, proprietary data from the Outcomes4Me platform, reporting on 1,862 medical records requests across 1,171 hospitals across every U.S. state.

Outcomes4Me is an AI-driven patient empowerment platform that helps cancer patients take a proactive approach to their care, gaining access to personalized, evidence-based treatment options and information. The company is on a mission to democratize healthcare by providing real-time, evidence-based clinical information to cancer patients, ensuring they can effectively navigate through their disease and improve their outcomes. In doing so, Outcomes4Me is working to promote health equity by generating deeper insights that improve care, and accelerating research and access to innovation. Based in Boston, Massachusetts, Outcomes4Me is a woman-led company of seasoned healthcare, oncology, pharmaceutical, consumer, and technology veterans. For more information, visit www.outcomes4me.com