Patients are willing to share their medical records with digital health apps if doing so will support their care but will not ask their doctor questions through the patient portal if forced to pay for those messages
BOSTON–December 19, 2023–Outcomes4Me Inc., the developer of the first direct-to-patient, personalized, and evidence-based cancer navigation platform, announced today the results of its second annual State of Patient Empowerment Report. The report is based upon a survey of more than 450 breast cancer patients and data from more than 850 medical records requests across 667 medical centers in every U.S. state. The study uncovered that only half of patients (51%) felt their care team was fully accessible to answer questions during active treatment and only a third of patients were fully satisfied with the information they received from their care team during both active treatment and survivorship.
Specifically, patients reported that their own life goals and preferences were not systematically discussed during treatment:
- Only 18% of patients were informed about how their treatment might affect pain management
- Only 36% of patients were informed about how their treatment might influence their reconstruction options
- Only 42% of patients were informed about how their treatment could contribute to lymphedema
At the same time, many patients were not presented with the latest, evidence-based options to guide their treatment choices. For example: only 28% of patients were alerted to clinical trials as a treatment option, despite the fact that clinical trials are considered as an important treatment option and are often the best approach to manage patients with cancer according to the NCCN®.
“We are committed to measuring patient empowerment within cancer each year,” said Maya R. Said, Sc.D., Founder and CEO at Outcomes4Me. “Unfortunately, we uncovered that little has changed since last year when it comes to patient-provider relationships and patient access to innovation. Patients remain at a disadvantage if they rely solely upon their provider for information to guide their care. Strains on the healthcare system and staffing challenges within the oncology workforce, combined with the fact that the majority of cancer patients receive their care in a community-oncology setting, lead to significant knowledge disparities among cancer patients.”
Information challenges are coupled with some patients’ inability to access their own health data in a timely fashion. Even though under the Cures Act patients are entitled to their medical records within 30 days of requesting them, the study found that only 45% of all medical records requests are fulfilled within that timeframe and, overall, only 42% of all institutions are fully compliant with the law.
Information and access gaps are driving self-advocacy online: 69% of patients use online resources at least several times a week to manage their care, while 34% of patients sought a second opinion from another provider. Additionally, 60% of patients in active treatment said they would be prevented from asking questions through a health portal if they were charged money for doing so; and, 87% of patients are seeking further information about their cancer from sources other than their care team.
The report also revealed that many patients are using the information they get to proactively shape their care. For example, more than a third of patients learned about clinical trials through online resources and 1 in 4 discussions about clinical trials between patients and physicians about clinical trials was initiated by the patient. Additionally, more than half of patients would be willing to share their medical records with an online platform if doing so would help them to manage their cancer care.
“Despite all of the challenges they face, our data shows that patients are taking a proactive approach to their care,” Dr. Said continued. “While this year’s study provides many sobering statistics about all of the work we have left to do, I am energized by patients’ embrace of and reliance on technology to ensure they can be true partners in their care experiences, which will ultimately close the care gap within cancer.”
To review the comprehensive data analysis and access the complete 2023 State of Patient Empowerment Report, please visit www.outcomes4me.com/patientempowerment/.
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.
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MEDIA CONTACT:
Brenna Fitzgerald
brenna@outcomes4me.com
