(UroToday.com) In this presentation, Mr. Geissler, a long-time cancer survivor and patient advocate discussed how qualitative data from patients can strengthen cancer research. He began by describing the difficult trade-offs that are often the norm for cancer patients: choosing between either proven or unknown therapies that have a range of side effects that can range from bad to ugly. Researchers and institutions can utilize the unique insights of the patient community to further understand these trade-offs. Patients can enunciate what true “unmet needs” are in a disease, and what they find valuable. Discussing these perspectives can help identify information gaps that hinder informed decision-making, understand how diagnostics and side effects impact quality of life, and what other practice challenges exist in cancer care.
Based on a previously published paper cited in the image below, Mr. Geissler emphasized the importance of patient involvement in clinical development. As noted by a prior presentation, patients classically were involved towards the end of clinical involvement especially to help boost trial enrollment and vet consent documents. However, earlier involvement such as in thinking about the best context for a trial, or how to best educate patients in the consent process, or what patient-reported outcomes to use, can be invaluable.
Beyond contributing to clinical studies, the patient community has contributed significantly to generating other types of evidence. For example, patient community groups have generated data on quality of life, patient experience, disease burden, adherence, and unmet needs. These data inform translational research questions, regulatory decisions, drug access, and ultimately individual treatment choices.
Mr. Geissler then discussed the issue of data accessibility, emphasizing that patients do not invest their lives into clinical studies only to have the researching organization sit on the data and not make it publicly available for others to learn from. New models of data ownership are needed to maximize the utility of patient data. One way of doing this would be to have patient organizations act as data fiduciaries and create data commons, gathering and anonymizing data that can then be shared with other key partners such as healthcare providers, clinical researchers, industry, regulators, payers, and policymakers.
He concluded by stating that patients can generate empirical data on unmet needs, the burden of disease, and patient preferences, and thus be key partners or drivers in clinical research.
Presented by: Jan Geissler, cancer survivor and patient advocate, WECAN (Working group of European Cancer Advocacy Networks)
Written by: Alok Tewari, MD, PhD – Genitourinary Medical Oncologist, Instructor in Medicine, Dana-Farber Cancer Institute, Harvard Medical School, Twitter: @aloktewar during the 2021 European Society for Medical Oncology (ESMO) Annual Congress 2021, Thursday, Sep 16, 2021 – Tuesday, Sep 21, 2021.