Together with a consortium of high-profile patient organizations, medical key opinion leaders, and a large biopharmaceutical company, DontBePatient designed and conducted the largest digital survey for patients with Prostate Cancer to date. We were truly honored when the initial results were selected for a keynote presentation at this year’s ASCO GU, out of only three highlighted from over 400 poster abstract submissions, and finally presented by our consortium partner Prof. Alicia K. Morgan from the Dana-Farber Institute at Harvard Medical School.
The goal of this patient insights survey was to map patient experiences through the entire diagnostic and therapeutic patient journey, uncover expectations, and attitudes, and to identify challenges and unmet needs in diagnosis, therapy patterns, care teams, quality of life (QoL), patient organizations, and resources.
To achieve this, we at DontBePatient partnered with several patient organizations, including ZERO and AnCan/UsToo (USA), Prostate Cancer UK, Tackle Prostate Cancer (UK), the Bundesverband Prostatakrebs Selbsthilfe e. V. (Germany), and Europa Uomo, as well as the leading medical experts Prof. Joe O’Sullivan from Queen’s Hospital Belfast, Prof. Axel Heidenreich from Hanover Medical School in Germany, and Prof. Alicia K. Morgans from Harvard Medical’s Dana-Farber Institute, and the biopharma company AAA, a Novartis Company. Together, this group collaboratively developed and conducted a large survey among patients with non-metastatic and metastatic Prostate Cancer in Germany (DE), the UK and the US in 2021. We further collaborated actively with patient organizations and a large group of medical experts to facilitate patient recruitment through social media advertising.
As a result, we have been able to complete no less than 15,000 completed surveys from Prostrate Cancer Patients in three countries and in only 2 months’ time, hitting our study’s target of reaching over 900 patients with metastatic disease in each country. Table 1 shows a summary overview on some aspects of the patient profiles from our completed surveys.
In her keynote speech, Prof. Morgans concluded that these data represent the largest digital survey ever conducted in patients with prostate cancer. As a result, this allows identification of unmet needs in the patient journey.
We will continue to analyze the rich data source collected through our survey and will next assess the impact of differences between patient journeys, trust in healthcare professionals, access to information, involvement with patient advocacy groups and quality of life. Results from this work will continue to generate high-profile scientific conference contributions and journal publications.
Alicia K. Morgans, Reiner Lehmann, Axel Heidenreich, Stephen Allen, Ernst-Günther Carl, Howard Wolinsky, Andreas Poschenrieder, Osvaldo Mirante, Joe M. O'Sullivan. Identifying patient profiles and mapping the patient journey across three countries in a large-scale, fully digital survey of patients with prostate cancer.J Clin Oncol 40, 2022 (suppl 6; abstr 16)