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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

New study of more than 1,800 breast cancer patients and 1,100 institutions reveals distinct information gaps that can lead to poor outcomes and further exacerbate disparities

BOSTON, MASS.–November 14, 2022– 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: 

  • Easy, timely, and actionable access to their full medical records
  • A trusted, multidisciplinary care team acting in a consultative manner
  • Access to care based on evidence-based standards and presentation of those standards 
  • Grounding of patients’ health and overall life goals to guide the treatment plan

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

  • Only 47% of institutions are fully compliant with individuals’ right under HIPAA to access health records.
  • Only 45% of respondents reported having full access to their medical records.
  • If patients do gain digital access to their medical record, 1 in 4 cannot understand it.

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

  • Only slightly more than half (55% of patients) felt their care team was accessible and/or that their oncologists really listened to them. 
  • 26% of patients reported not having a trusted relationship with their care team.
  • 1 in 4 patients learned first about their cancer diagnosis through an online portal rather than their care team.
  • 46% of patients did not feel fully comfortable engaging their care team to advocate for themselves.

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

  • 37% of total respondents reported their doctor did not recommend genetic testing or genomic profiling at the time of diagnosis. 55% of patients with a household income of less than $75,000 were offered the opportunity, compared to 88% of patients with a household income of more than $150,000. 
  • Only 1 in 5 patients reported that their doctors presented them with a clinical trial as a treatment option. 18% of patients receiving treatment in a community hospital reported learning about clinical trials, compared to 31% receiving treatment in an academic setting. 17% of patients 66 and older said they were offered a clinical trial compared to 24% for patients under the age of 66.
  • Only 42% of patients reported being given a post-treatment care plan.

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

  • More than two-thirds of patients across the entire care continuum, from diagnosis to remission or no evidence of disease, have not had a discussion with their care team about advance care planning.
  • More than 40% of respondents reported not having a discussion with their doctor on how their treatment could affect their options regarding breast reconstruction, pain management, or lymphedema, and doctors did not share how treatment decisions could affect the ability to have children with 39% of surveyed women under the age of 51.   
  • 27% of patients feel they are not in control of their care decision-making.

“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 here.

Report Methodology

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.

About Outcomes4Me

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 

About the HLTH Foundation

The HLTH Foundation is a 501(c)3 non-profit organization owned by HLTH, INC., that promotes equity, inclusion and opportunity in healthcare, focusing on underserved patients, healthcare professionals and innovators in digital health and health technology. For more information, visit www.hlthfoundation.org

About Boston Consulting Group

Boston Consulting Group partners with leaders in business and society to tackle their most important challenges and capture their greatest opportunities. BCG was the pioneer in business strategy when it was founded in 1963. Today, we work closely with clients to embrace a transformational approach aimed at benefiting all stakeholders—empowering organizations to grow, build sustainable competitive advantage, and drive positive societal impact.

Our diverse, global teams bring deep industry and functional expertise and a range of perspectives that question the status quo and spark change. BCG delivers solutions through leading-edge management consulting, technology and design, and corporate and digital ventures. We work in a uniquely collaborative model across the firm and throughout all levels of the client organization, fueled by the goal of helping our clients thrive and enabling them to make the world a better place.

About Publicis Health

At Publicis Health, we are united around one purpose: to create a world where people are equipped and motivated to take control of their health. We transform healthcare marketing and communications into healthcare engagement. We believe healthcare marketing is healthcare, fostering healthy conversations, healthy behaviors, and healthy people. With 40 offices and 12 brands across the globe, Publicis Health’s worldwide staff is composed of more than 3,000 healthcare professionals who are experts in advertising and branding, data and analytics, strategic planning, service design, digital media and technology, science, and medicine. Publicis Health companies include: BBK Worldwide, Digitas Health, Heartbeat, insync, Langland, Payer Sciences, PlowShare Group, Publicis Health France, Publicis Health Media, Razorfish Health, Saatchi & Saatchi Wellness, and Verilogue. For more information, visit us at www.publicishealth.com



MEDIA CONTACT: Brenna Fitzgerald, VP of Strategic Communications (brenna@outcomes4me.wpenginepowered.com)