Pitfalls and Red Flags

Surveys have some inherent biases that need to be controlled for in studies. People who respond to online surveys, for example, are more likely to be educated, white, and affluent. To mitigate this affect, Dr Johnson said sampling should be taking place at large university health centers alongside clinical trials, where patients can be selected randomly. If this is not an option for small advocacy groups, Dr Johnson said that statistical techniques can be applied after the fact to correct any biases.

Dr Johnson pointed out that good question design is key. He suggested gathering input from the target population to make sure the questions make sense and to ensure respondents fully understand the meaning of the potential answers. Financial disclosures of those running the survey are another important consideration. Any organization that does not disclose its funding should not be running patient surveys as a patient organization, he said.

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And for cancer patients specifically, timing is key. Dr Lee hypothesized that the values and preferences of individuals with cancer may change throughout the course of their treatment. “When people are first diagnosed with disease, I get the sense that almost everyone will say that they are willing to do anything,” he said. But lengthy treatments that may be financially draining, and that, coupled with undesirable side effects, can serve to change minds. “Some of the ways [in which individuals with cancer] think about those decisions really do change,” he said.

Leave it to the Pros

To tackle these challenges, many organizations opt to outsource their surveys to third-party organizations that specialize in this type of research. The Lymphoma Coalition, a worldwide network of lymphoma patient groups, conducts a biannual global survey on patient expectations of treatment using an outside vendor, for example.

According to Lorna Warwick, chief executive officer of the Lymphoma Coalition, patient input should always be incorporated in the drafting of survey questions to ensure the questions are worded to give researchers the information they are looking to gather. The value in hiring a third party allows researchers to be confident they are asking the right questions — questions that actually deliver actionable, valid results. Plus, “it’s a big job,” Warwick added, and it frees organizations up to focus on their true missions.

The 2018 survey collected responses from 6631 people across 14 countries on their experience being diagnosed and treated with lymphoma.3 An important finding from the survey: patients who considered themselves adequately informed and had good conversations with their doctors felt “in control” most days. Patients that were inadequately informed and reported fewer good conversations with doctors felt less in control.

“There is [a] benefit to having surveys designed by people who do market research,” added Dr Lee.

Not every organization has the resources to hire the pros, but that is why Maskens thinks organizations should work together more frequently. She would like to see fewer surveys — as well as surveys that are more robust — and urges advocacy groups to work together. “I would love to see some quality standards established for patient surveys … with an ability to say that ‘this study instrument has been reviewed,’” she said.


  1. Battle D, Bergerot CD, Msaouel P, et al. Patient preferences and expectations of systemic therapy in renal cell carcinoma. Presented at: ASCO20 Virtual Scientific Program. J Clin Oncol. 2020;38(suppl):abstr 5083.
  2. The cancer gap: landmark study reveals disconnects and changing pressure points in cancer care. The 2016 CancerCare patient access and engagement report fact sheet. Published March 2016. Accessed June 30, 2020. https://media.cancercare.org/accessengagementreport/CAPER-Report-Fact-Sheet.pdf
  3. Lymphoma Coalition: Worldwide Network of Lymphoma Patient Groups. 2018 global patient survey on lymphomas & CLL: A country report. Published June 2018. Accessed June 30, 2020.

This article originally appeared on Cancer Therapy Advisor