Nearly two out of three people in four major European countries have no awareness of personalized medicine—despite the fact that this evolving discipline has vast implications for Europe's healthcare issues and Europeans' personal health.
Those statistics are part of the PACE Cancer Perception Index, which studied knowledge and attitudes about cancer treatment and care, the healthcare system and patient involvement, presented at the European Alliance for Personalized Medicine (EAPM) conference in Dublin. PACE, a Lilly Oncology initiative, stands for Patient Access to Cancer care Excellence.
Irish Minister of Health Dr. James Reilly stressed the potential of personalized medicine "to provide solutions that are better tailored to the individual patient than traditional 'one size fits all' medicinal products."
A highlight of the conference was a work group that discussed the importance of informed, engaged and empowered patients where personalized medicine is concerned. Central to the discussion were the results of the PACE Cancer Perception Index: A Six-Nation, Public Opinion Survey of Cancer Knowledge and Attitudes.
"The PACE Cancer Perception Index devoted a considerable amount of time to the subject of personalized medicine, and what we found was both surprising and promising," said Sue Mahony, Ph.D., president, Lilly Oncology. "While only one-third of respondents were aware of personalized medicine, the majority were supportive once the concept was introduced. They not only recognized its benefits for them and society, but they expressed a willingness to help by being tested for personalized medicine, and by sharing their medical information."
Among people in the U.K., France, Germany and Italy who were surveyed, there was strong support for personalized medicine, with 91% in the U.K. and 75% in Italy believing doctors should discuss personalized medicine with their cancer patients. Of all survey respondents, 70% said they were willing to be tested for personalized treatment even if it would not work for them. More than 50% see it as a cost-saving measure for their healthcare systems.
Personalized medicine depends on making better use of patient data and genomic information; detailed profiling of individuals is necessary to take advantage of a molecular understanding of diseases. The survey showed there is willingness among the general public, patients and caregivers to share medical records and test results with physicians and scientists when it comes to supporting research. Nearly nine in 10 respondents would agree to share medical records for the improvement of cancer research and treatment. Still, sizable minorities report concerns about potential misuse of data, with 53% of Italian respondents expressing the most concern.
The public also expressed a willingness to be part of an improved clinical trial and drug development system. More than 70% of the general public said patients need more opportunities to participate in clinical trials. According to the Irish Ministry of Health, the E.U. Clinical Trials Proposal will address the decline in the numbers of clinical trials, a high priority for the Irish presidency of the E.U.
Nearly six in 10 surveyed said they are satisfied with the progress made in the fight against cancer over the past 20 years, but 72% believe there is not enough information available to patients about new treatment options like personalized medicine. In fact, more than four out of 10 people surveyed believe cancer is a single disease, when in fact it is more than 200 different diseases with many different biologic, genetic and environmental origins.
"The findings of the PACE Cancer Perception Index present a clear directive for all stakeholders involved in bringing personalized medicine to the forefront," said J. Gordon McVie, M.D., PACE Global Council member, senior consultant to the European Institute of Oncology in Milan and founding editor of ecancer.org.
"First, patients have a voice and deserve our attention," said McVie. "Second, they need to be engaged—not only in personalized medicine, but in the clinical trials and the record sharing that enable it. Third, we need to do a better job of keeping patients informed. That is an area where PACE can make a difference."
Commissioned by Lilly Oncology and conducted by GfK, a total of 663 cancer patients and 669 cancer caregivers were interviewed, with approximately 100 from each group per country in France, Germany, Italy, Japan, and the U.K., and 150 from each group in the U.S.