Study: cancer patients frustrated with slow rate of treatment innovations

By Jenni Spinner

- Last updated on GMT

(FatCamera/iStock via Getty Images Plus)
(FatCamera/iStock via Getty Images Plus)

Related tags Cancer Oncology Real world data Patient centricity Data management

Cota has released a survey revealing about two-thirds of cancer patients and their families are unsatisfied at the speed of cancer treatment development.

Cota, an oncology-focused real-world data (RWD) and analytics firm, has announced finding from a study looking into how cancer patients and their immediate families perceive cancer trials and drug development. The study reveals a number of thoughts and feelings—for example, approximately 66% of those surveyed believe trials geared toward cancer treatments and therapies aren’t moving fast enough.

The study checked in with 1,110 people in the US who either have had cancer or have had someone in their family diagnosed with cancer. CK Wang, Cota’s chief medical officer, said his personal experience with cancer patients has offered insight into how a cancer diagnosis can impact patients and their loved ones.

As an oncologist, I have seen firsthand how devastating a cancer diagnosis is for a patient and their family​,” Wang said. “It is hard to not look back and question whether some of my patients would have survived had innovations specific to cancer care and treatment been accelerated through highly focused funding, research, technology, and innovative collaborations like those prioritized for the COVID-19 vaccine​.”

Operation Warp Speed (OWS), the ultimately successful effort to fast-track the creation and adoption of vaccines for COVID-19, reportedly has helped to reinforce expectations that the development of cancer treatments can, and should, be accelerated. About half of study respondents overall specifically cited following reports of vaccine development and deployment have led them to believe cancer treatments should be developed more rapidly, with patients themselves slightly more likely (about 60%) to hold that belief.

While recent data indicates an overall decline in cancer deaths overall between the years of 2014 and 2018, researchers have noted an increase in both certain types of cancers, and in specific populations. For example, the incidence of cancer has increased in women, children, teens, and young adults.

What’s more, Black Americans and other racial minorities continue to experience higher death rates and lower survival rates, with Black patients themselves being the lowest. In the Cota study, respondents’ perception of clinical trial representation does not reflect reality—while Black, Latino, and other patient groups are woefully underrepresented, 82% of survey respondents believe current trials are inclusive.

What has been reinforced by the pandemic and what we already know from advanced cancer research, is that — despite what patients may believe — not all people are equally represented in cancer clinical trials — and that has to change​,” Wang added.

The lack of representation in trials and overrepresentation in cancer cases among certain populations has attracted the attention of both industry professionals and government leaders. For example, the US Cancer Moonshot​ is a federally backed effort to accelerate research, and President Joe Biden’s administration recently called for a $9b USD increase in National Institutes of Health funding to help address cancer challenges.

The Cota study found nearly 90% of respondents support cancer patients anonymously sharing health data in order to help advance the research, discovery, and development of treatments. Gwen Nichols, chief medical officer with the Leukemia and Lymphoma Society, said, “Sharing anonymized personal health data gives patients a sense of control and allows them to contribute to the greater good; given growing concerns related to an uptick in cancer cases due to delayed treatments and screenings — as well as the significant impact of COVID-19 on blood cancer patients in particular — it is critical for cancer patients to take an active and collaborative role in solving for cancer treatments and cures moving forward​.”

 Other study findings:

  • 87% of respondents indicated they would not care if their data had already been anonymously shared
  • 86% think cancer doctors should discuss the value of sharing data with researchers as part of patient interactions
  • 85% said they would agree to share their anonymous data if their doctor asked
  • 53% believe a cure would already be in hand if all cancer patient data were collected and combined.

As technology and smart, standardized data practices have advanced, patients have clearly become more understanding and willing to contribute their data to the greater good. Clinicians have an important role to play in encouraging patients to be part of the solution to accelerating cancer innovation​,” said Wang. “The more real-world data we have from cancer patients, the more successful we will be in building treatments and therapies that save lives​.”

The Cota survey was conducted by PureSpectrum, a market research platform that gathers insights through online, nonprobability samples collected from panels.

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