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Global Survey Underscores Importance of Patient Education and Engagement in Personalised Medicine


News provided by

Lilly Oncology

21 Mar, 2013, 09:00 GMT

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PACE Cancer Perception Index Infographic (PRNewsFoto/Lilly Oncology)

DUBLIN, March 21, 2013 /PRNewswire/ --

Nearly two out of three people in four major European countries  have no awareness of personalised medicine - despite the fact that this evolving discipline has vast implications for Europe's healthcare issues and Europeans' personal health. These statistics presented today at the European Alliance for Personalised Medicine (EAPM) conference taking place in Dublin, in association with the Irish EU Presidency, were part of the PACE Cancer Perception Index that studied knowledge and attitudes about cancer treatment and care, the healthcare system and patient involvement. PACE, a Lilly Oncology initiative, stands for Patient Access to Cancer care Excellence.

The EAPM Conference on Innovation and Patient Access to Personalised Medicine brought together researchers, patients, healthcare professionals, payers, regulators, policymakers and industry to evaluate the potential and the development of personalised medicine in light of the European economic crisis.[i]

Irish Minister of Health Dr. James Reilly stressed the potential of personalised medicine "to provide solutions that are better tailored to the individual patient than traditional 'one size fits all' medicinal products."[ii]

"Personalised medicine is a promising concept," said Tonio Borg, European Union (EU) Commissioner for Health and Consumers. "As patients are divided into groups based on their individual, biological, genetic and genomic characteristics, medical interventions are tailored to those patients' needs."

"Hence, this new approach can help reduce the risk of undesirable adverse reactions and at the same time, make medicines more effective," said Mr. Borg. "And it also yields a maximum return on healthcare investment - a valuable argument for decision makers, in times of austerity."[iii]

Public Supports Personalised Medicine

A highlight of the conference was a work group that discussed the importance of informed, engaged and empowered patients where personalised 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 personalised 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 personalised medicine, the majority were supportive once the concept was introduced," Dr. Mahony said. "They not only recognised its benefits for them and society, but they expressed a willingness to help by being tested for personalised medicine, and by sharing their medical information."

Among people in the United Kingdom, France, Germany and Italy who were surveyed, there was strong support for personalised medicine, with 91 percent in the United Kingdom and 75 percent in Italy believing doctors should discuss personalised medicine with their cancer patients. Seventy percent of all survey respondents said they are willing to be tested for personalised treatment even if it would not work for them. More than 50 percent see it as a cost-saving measure for their healthcare systems.

Interest in Sharing Medical Records and Test Results

Personalised 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.[iv]

Findings from the survey show 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 percent 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. For example, more than 70 percent of the general public said that patients need more opportunities to participate in clinical trials. According to the Irish Ministry of Health, the EU Clinical Trials Proposal will address the decline in the numbers of clinical trials. This is a high priority for the Irish Presidency of the EU.[ii]

Public Wants More Information on Personalised Medicine

Nearly six in 10 surveyed say that they are satisfied with the progress made in the fight against cancer over the past 20 years, but 72 percent believe there is not enough information available to patients about new treatment options like personalised medicine. In fact, more than four out of 10 people surveyed believe that cancer is a single disease, when in fact it is more than 200 different diseases with many different biologic, genetic and environmental origins.[v]

"The findings of the PACE Cancer Perception Index present a clear directive for all stakeholders involved in bringing personalised 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 Dr. McVie. "Second, they need to be engaged - not only in personalised 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, one of the world's leading research companies, the survey polled 4,341 individuals, including the general population (3,009), cancer patients (663) and caregivers (669), from 28 August to 4 October, 2012. Survey participants were from six countries including the UK, as well as France, Germany, Italy, Japan and the United States.[1]

About PACE

Created by Lilly Oncology as a global collaboration spanning diverse sectors, PACE exists to encourage public policies and healthcare decisions that speed the development of new medicines, assure cancer treatments respond to the needs and qualities of individual patients, and improve patient access to the most effective cancer medicines. PACE has been launched in six countries -  France, Germany, Italy, Japan, United Kingdom and the United States - and is engaging key oncology stakeholders in each: patients, advocacy, payers, policymakers, providers, the public, researchers and politicians. To learn more about PACE and the PACE Cancer Perception Index, please visit http://www.pacenetwork.com.

About Lilly Oncology

For more than four decades, Lilly Oncology, a division of Eli Lilly and Company, has been dedicated to delivering innovative solutions that improve the care of people living with cancer. Because no two cancer patients are alike, Lilly Oncology is committed to developing novel treatment approaches.

About Eli Lilly and Company

Lilly, a leading innovation-driven corporation is developing a growing portfolio of pharmaceutical products by applying the latest research from its own worldwide laboratories and from collaborations with eminent scientific organizations. Headquartered in Indianapolis, Ind., Lilly provides answers-through medicines and information-for some of the world's most urgent medical needs.

PACE Cancer Perception Index  Research Methodology[2]

The PACE Cancer Perception Index was fielded in France, Germany, Italy, Japan, the UK and the U.S. National representative samples of the general population ages 18 and over were used for the survey, deploying a random digit dial (RDD) telephone method. The sample comprises approximately 70 percent landline respondents and 30 percent cell phone respondents in each country in order to account for the fact that some households only have cell phones. A total of 3,009 respondents were interviewed, with approximately 500 respondents per country. All interviews were conducted by native language speakers of each country, calling from a central interviewing facility in London, UK. The sampling error is +/-1.9 percentage points for the six-country total sample, and +/- 4.6 to +/- 5.0 percentage points for individual countries.  

For the purpose of comparison, cancer patients and cancer patient caregivers were also interviewed. 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 UK, and 150 from each group in the U.S. Qualified respondents were selected from online panels and interviewed online. The sample source for these two groups was primarily uSamp for all countries; in Germany, Survey Sampling Inc. (SSI) was also used; and in Japan, three other sample sources - AIP, Toluna and SSI - were also used. The sample frame represents a broad mix of age, cancer type and stage but may not represent the universe of cancer patients or their caregivers.

C-LLY

#    #    #

For more information about PACE Cancer Perception Index and PACE, please click on the links below to download the PACE Cancer Perception Index Infographic and media fact sheets.

PACE Cancer Perception Index Infographic

     (Graphic: http://photos.prnewswire.com/prnh/20130321/602030-INFO )

PACE Fact Sheet

https://www.multivu.com/assets/60140/documents/60140-PACE-Fact-Sheet-FINAL-original.pdf

PACE Survey Fact Sheet

https://www.multivu.com/assets/60140/documents/60140-PACE-Survey-Fact-Sheet-FINAL-original.pdf 

1. Unless otherwise specified, reported percentages refer to the general population surveyed.

2. Percentages not totaling 100%: For tabulation purposes, percentage points are rounded off to the nearest whole number. As a result, percentages may total slightly higher or lower than 100%.

i. European Alliance for Personalised Medicine (EAPM): "Conference on Innovation and Patient Access to Personalised Medicine." http://supportbase.eu.com/eapm/html/programme.html#co [http://supportbase.eu.com/eapm/html/programme.html]. Accessed 11 March 2013.

ii. Foreword by Dr. James Reilly, Irish Minister of Health; European Alliance for Personalised Medicine: "Conference on Innovation and Patient Access to Personalised Medicine"; 21 March 2013.

iii. EAPM Working Document Draft Report: Innovation and Patient Access to Personalised Medicine, Irish Presidency Conference March 20th/21st, 2013; foreword by Tonio Borg, European Union Commissioner for Health and Consumers.

iv. EAPM Working Document Draft Report: Innovation and Patient Access to Personalised Medicine, Irish Presidency Conference March 20th/21st, 2013; Chapter 6: An Informed, Engaged and Empowered patient.

v. Cancer Research UK, "How Many Different Types of Cancer are There?"; http://www.cancerresearchuk.org/cancer-help/about-cancer/cancer-questions/how-many-different-types-of-cancer-are-there. Accessed 11 March 2013.

For Immediate Release

Contact:  Corina Ramers-Verhoeven, Lilly        
+31-30-6025-828 (office)            
+31-6-1500-6046 (mobile)                
Email: ramers_corina@lilly.com   

Grainne Maguire, TogoRun
+44-207-554-1813 (office)     
+44-(0)-7540-002-009 (mobile)
Email: g.maguire@togorun.com

  

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