In April, we commemorate National Cancer Control Month as well as National Minority Cancer Awareness Month, initiatives designed to draw awareness to inequities in cancer care and close the care gap. This is an important and noble mission, one I have devoted my career to; however, I believe it is nearly impossible to truly reduce disparities in care unless patients move into the driver’s seat of their own care decision-making through the practice of patient empowerment.

We are at a critical moment when it comes to cancer innovation and improving outcomes. While I feel confident that recent advances in cancer innovation will lead to much better outcomes at the individual level, unless we do something about it, they will likely lead to poorer outcomes at the population level. This is because the nature and pace of cancer innovation is making it exponentially more difficult to reach the right patients at the right time with the right treatment. Cancer innovation has not only accelerated in the past five years but has also become increasingly targeted. In 2021 alone, 30 oncology novel drugs were launched globally. Also in 2021, there were 55 new approvals across all cancer indications. Over 7,000 cancer trials are currently actively recruiting in the U.S.

Additionally, treatments are increasingly becoming more targeted and targeting more specific subpopulations. In fact, oncology drugs are increasingly receiving accelerated approvals for orphan or breakthrough designations. As a result, each cancer is being divided into multiple sub cancers, each of which has its own drug and treatment approach. Not surprisingly, treatment guidelines can barely keep up with these changes.

Take breast cancer as an example. In 2021, the NCCN Guidelines® for breast cancer updated eight times. In 2020, the guidelines updated six times. Realistically, no care team can keep pace with all of that change in real-time, personalized to each patient.

Beyond the overwhelming complexity within the treatment universe, the number of people diagnosed and living with cancer in the U.S. continues to increase. According to the American Cancer Society, approximately 2 million people were expected to be diagnosed with cancer in 2022, and more than 600,000 were likely to die from cancer. 

How do we reach the right patient at the right time, and with the right treatment and follow-up care?

Enter patient empowerment.

It is easy to use a phrase like patient empowerment, but harder to create a shared understanding of what it actually means for a patient to be empowered. That is why we at Outcomes4Me worked with the HLTH Foundation, BCG, and Publicis Health, to both define and measure the state of patient empowerment in the U.S. We set out to understand: are patients able to take a proactive approach to their care and act on their own health and life goals? Because we cannot change what we do not measure. We identified and measured four prerequisites to patient empowerment:

1. Do people have actionable access to their health data?
2. Do they have a care team that is not only competent (multidisciplinary) but also trusted and acting in a consultative manner during key decision points and available to answer questions when they arise?
3. Are evidence-based treatment options systematically presented to them?
4. Are they asked about their individual health and overall life goals and are these preferences impacting the treatment plan?

In our State of Patient Empowerment Report, based upon a survey of more than 1,800 breast cancer patients and data from 1,100 institutions, we unfortunately revealed what we suspected: patients do not have the information they need to engage in true shared decision-making. Just a snapshot of the findings underscore the scope of the problem:

• Only 45% of respondents reported having full access to their medical records.
• 1 in 4 patients learned first about their cancer diagnosis through an online portal rather than their care team.
• 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. 
• 27% of patients feel they are not in control of their care decision-making.

When discussing the report findings at the HLTH Conference in Las Vegas in November, we brought together a panel of cancer patients and providers to discuss the challenges we face. That discussion made it remarkably clear: each stakeholder plays a role in ensuring industry innovation reaches clinical practice and, ultimately, benefits patients. The lack of patient empowerment is not a patient problem, it is a system problem. 

“Our healthcare system has evolved into a system that cares more about the bottom line than it does about patient outcomes and patient care,” said Shikha Jain, M.D., Founder, Women in Medicine and an Associate Professor at the University of Illinois Cancer Center.

“If you're an oncologist who's managing breast cancer and GI cancer and hematology issues and prostate cancer, the guidelines change so quickly, the clinical trials open up so quickly, the change happens so fast, that it's impossible in that 15-minute visit to cover all the clinical trial options because you may not even know 80% of the trials that are out there for your patient. We need to think very long and hard about how we're going to fix [the healthcare system] and disrupt it and change it because what we have right now is not working for our patients or for our providers.”

Patients, providers, and life sciences each play a role in closing the care gap

Today the system is not set up to enable the rapid dissemination of treatment innovation. In fact, it has already reached its capacity as demonstrated by the inequities that already exist in cancer. For example, Black women are 40% more likely to die of breast cancer despite having lower rates of breast cancer than white women – because people of color have traditionally had less access to high-quality healthcare. 

“How do we create a space for health literacy and self-agency in light of the challenges facing providers?” said Kimberly Richardson, patient advocate and ovarian and breast cancer survivor. “Doctors don’t have the time, so do we die because they can’t click fast enough to get me through a 15-minute visit?”

If we do not do something about it now, the care (and outcomes) gap will only get worse. The good news is we can do something about it. Today, thanks to technological innovation, more and more people can have access to more information more readily and more cheaply. In theory, more people should be able to have timely access to the right information at the right time and the ability to act on it. In practice, though, today the system is not set up to leverage tech innovation to empower patients. Even though the system is meant to be patient-centric, it is not set up to put the patient at the center of an increasingly connected healthcare world. This core problem is why I left the pharmaceutical world and launched a digital health company that is empowering patients with direct access to evidence-based information. After leading global market access for oncology at Novartis, I grew frustrated that the science simply was not reaching the patients who could most benefit quickly enough.

As we again acknowledge cancer awareness initiatives when vast inequities in cancer care remain, we must listen to and empower the voices of patients. As Abigail Johnston, a stage IV metastatic breast cancer patient, said during the panel at HLTH:

“So doctors need to listen. Everybody in the healthcare system needs to listen to those of us who live this every single day. 24/7, 365 days a year. For as long as we get.”

Dr. Said is the Founder and CEO of Outcomes4Me, a health technology company focused on empowering cancer patients with personalized, evidence-based navigation and improving outcomes through better access to innovation. Prior to founding Outcomes4Me, she was Senior Vice President of Global Market Access & Policy at Novartis Pharmaceuticals and Vice President of Strategy & External Innovation at Sanofi. Dr. Said is a strong advocate for life sciences innovation and serves on the Board of Directors of Transgene, Pieris Pharmaceuticals, and Home Biosciences. She was a founding member of the Boston Consulting Group Strategy Institute.