Διεθνής Συνάντηση Μ.Κ.Ο. κατά του καρκίνου, Φρανκφούρτη...
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BEST PRACTICE LEVERAGING A GLOBAL PAR ACTIVITY TO BENEFIT CANCER PATIENTS IN GREECE! When BI Oncology Product Manager, Dr. Bessie Tsagaraki, contacted the Global PAR Team late last spring to see if it was still possible to nominate a candidate for the Patient Advocacy Leaders Advisory Board, little did she know that her inquiry would favorably impact the cancer patient community in Greece. Upon receiving the news that submissions were still being accepted, and acting on behalf of the business unit in Greece, Bessie sprang into action and sent us the name of George Stamatis, Vice President of the Athens Association of Cancer Patients and Friends (K.E.F.I.) a pan-tumor patient advocacy group (PAG). Mr. Stamatis turned out to be an excellent participant, who drew on his professional background in communications to eloquently share with BI and other advocacy leaders the experiences of cancer patients in Greece as well as his own experience successfully battling lymphoma. We recently learned from Bessie that Mr. Stamatis was so enthusiastic about what he took away from the ad board that K.E.F.I. will now conduct a survey of its members and friends to identify where their needs stand in comparison to that of other countries represented at our meeting. The survey kick off will coincide with K.E.F.I.’s annual one-day members conference taking place on November 20th, and will include topics such as: • awareness of clinical trials, guidelines, patient rights and market access issues • indentifying preferred communications channels for education and updates • understanding the type of treatment information patients need and their treatment selection criteria • understanding whether treatment administration plays a role in treatment selection and adherence • identifying which treatment side effects are the most troublesome for patients Based on the results of the survey, K.E.F.I. will re-evaluate the services and information it provides to cancer patients and their families as well as redesign their website. Currently, there is little baseline information about these topics at either the PAG or pharma level. Therefore, the survey results are eagerly anticipated and can help to inform future programming. Based on the presentation, Individualizing Cancer Treatment and Care, given by Dr. Markus Loeffler, BI International Medical Advisor, at the ad board, another exciting outcome was a desire by Mr. Stamatis to educate K.E.F.I.’s fellow board members and cancer patients about genetics, biomarkers and targeted treatments. However, due to restrictions in Greece, which prohibit pharmaceutical companies from having direct contact with patients and PAGs to prevent promotion of drugs, a physician with no ties to BI will discuss this topic at the one-day members conference, representing another first time activity for K.E.F.I. UPDATES GLOBAL PATIENT ADVOCACY LEADERS ADVISORY BOARD An Executive Summary outlining the meeting’s key takeaways and recommendations was distributed electronically to internal stakeholders on October 19th. The most common issues that surfaced and cut across all geographic boundaries, included: • Lack of transparency regarding health technology assessment (HTA) processes • Patients have limited awareness and understanding of their rights • Geography, government budget decisions and health systems impact access to diagnosis and treatment • Lack of knowledge about targeted therapies by patients and HCPs • Managing patients’ expectations about new targeted treatments is critical Overwhelmingly, both advocacy leaders and BI colleagues who attended gave the meeting an excellent evaluation. One advocate said, “Delighted with this unique initiative that has brought together key opinions leaders (with great experience in improving benefits for patients) to share experiences and best practices.” An OPU colleague said, “We have to continue working this way with PAGs in order to learn more from them; to optimize our marketing strategies and develop more awareness of the advocates.” If you would like to receive a copy of the summary, please contact Donna Shu. The summary will also be available in BRAINS. UN SUMMIT ON NON COMMUNICABLE DISEASES (NCDS) On September 19th, The United Nations gathered Heads of State and policy makers at a special UN Summit to discuss the growing problem of NCDs, including cancer, diabetes, respiratory and cardiovascular diseases. The Summit succeeded in placing cancer (and other NCDs) on the global political agenda with the recognition that a whole of government and whole of society approach is required to fight the rising burden of NCDs. Specific commitments, such as NCD plans and establishment of NCD units were made by 43 member states of the 133 who made statements. However a strong focus on the need for targets and accountability was made by UN Secretary General Ban Ki Moon. Spearheading the representation of cancer at the UN Summit was the Union for International Cancer Control (UICC) of which BI is a member. Immediately following the event, UICC gathered a cross-section of leaders in cancer control to share their initial reactions to the Summit with the objective of gathering a common understanding of the implications and opportunities for cancer control in the approved outcomes document (Political Declaration) and identifying immediate next steps to be taken. Further discussion will take place at UICC’s World Cancer Leaders Summit on November 18th in Dublin Ireland. IN THIS ISSUE Best Practice • Greece OPU Updates • Global Patient Advocacy Leaders Advisory Board • UN Summit on NCDs NEWS YOU CAN USE Advocacy Leaders expressed interest in learning more about Health Technology Assessments. Follow up with your PAGs by providing the link below to the Health Technology Assessment International website where one can find Health Equality Europe: A guide to understanding HTA for Patients and the Public. The guide is available in English, Spanish, Mandarin and Polish. http://www.htai.org/index. php?id=545 TOP MESSAGES FROM THE UN SUMMIT ON NCDs • Collaboration with other NCDs should be maintained moving forward • Focus on models to ensure regional differences are taken into account • Collaboration across sectors – public, private and NGO – is essential • Need to engage the international development organizations COMING EVENTS: November is Lung Cancer Awareness Month! World Cancer Leaders Summit, November 18, 2011 , Dublin, Ireland San Antonio Breast Cancer Symposium (SABCS), December 6-10, 2011, San Antonio, Texas YOUR NEWS: Send us your news and share your best practices! Email: donna.shu@ boehringer-ingelheim.com VASILIKI TSAGARAKI, MSc, PhD, MBA ONCOLOGY PRODUCT MANAGER GEORGE STAMATIS VICE PRESIDENT, K.E.F.I. PATIENT ADVOCACY LEADERS AND OPU REPRESENTATIVES AT THE GLOBAL PAR ADVISORY BOARD IN FRANKFURT
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Transcript of Διεθνής Συνάντηση Μ.Κ.Ο. κατά του καρκίνου, Φρανκφούρτη...
BEST PRACTICE LEVERAGING A GLOBAL PAR ACTIVITY TO BENEFIT CANCER PATIENTS IN GREECE!When BI Oncology Product Manager, Dr. Bessie Tsagaraki, contacted the Global PAR Team late last spring to see if it was still possible to nominate a candidate for the Patient Advocacy Leaders Advisory Board, little did she know that her inquiry would favorably impact the cancer patient community in Greece. Upon receiving the news that submissions were still being accepted, and acting on behalf of the business unit in Greece, Bessie sprang into action and sent us the name of George Stamatis, Vice President of the Athens Association of Cancer Patients and Friends (K.E.F.I.) a pan-tumor patient advocacy group (PAG). Mr. Stamatis turned out to be an excellent participant, who drew on his professional background in communications to eloquently share with BI and other advocacy leaders the experiences of cancer patients in Greece as well as his own experience successfully battling lymphoma. We recently learned from Bessie that Mr. Stamatis was so enthusiastic about what he took away from the ad board that K.E.F.I. will now conduct a survey of its members and friends to identify where their needs stand in comparison to that of other countries represented at our meeting. The survey kick off will coincide with K.E.F.I.’s annual one-day members conference taking place on November 20th, and will include topics such as: • awareness of clinical trials, guidelines, patient rights and market access issues • indentifying preferred communications channels for education and updates • understanding the type of treatment information patients need and their treatment
selection criteria • understanding whether treatment administration plays a role in treatment selection
and adherence • identifying which treatment side effects are the most troublesome for patients Based on the results of the survey, K.E.F.I. will re-evaluate the services and information it provides to cancer patients and their families as well as redesign their website. Currently, there is little baseline information about these topics at either the PAG or pharma level. Therefore, the survey results are eagerly anticipated and can help to inform future programming.Based on the presentation, Individualizing Cancer Treatment and Care, given by Dr. Markus Loeffler, BI International Medical Advisor, at the ad board, another exciting outcome was a desire by Mr. Stamatis to educate K.E.F.I.’s fellow board members and cancer patients about genetics, biomarkers and targeted treatments. However, due to restrictions in Greece, which prohibit pharmaceutical companies from having direct contact with patients and PAGs to prevent promotion of drugs, a physician with no ties to BI will discuss this topic at the one-day members conference, representing another first time activity for K.E.F.I.
UPDATESGLOBAL PATIENT ADVOCACY LEADERS ADVISORY BOARDAn Executive Summary outlining the meeting’s key takeaways and recommendations was distributed electronically to internal stakeholders on October 19th. The most common issues that surfaced and cut across all geographic boundaries, included: • Lack of transparency regarding health technology assessment (HTA) processes • Patients have limited awareness and understanding of their rights • Geography, government budget decisions and health systems impact access to diagnosis and treatment • Lack of knowledge about targeted therapies by patients and HCPs • Managing patients’ expectations about new targeted treatments is criticalOverwhelmingly, both advocacy leaders and BI colleagues who attended gave the meeting an excellent evaluation. One advocate said, “Delighted with this unique initiative that has brought together key opinions leaders (with great experience in improving benefits for patients) to share experiences and best practices.” An OPU colleague said, “We have to continue working this way with PAGs in order to learn more from them; to optimize our marketing strategies and develop more awareness of the advocates.” If you would like to receive a copy of the summary, please contact Donna Shu. The summary will also be available in BRAINS.
UN SUMMIT ON NON COMMUNICABLE DISEASES (NCDS)On September 19th, The United Nations gathered Heads of State and policy makers at a special UN Summit to discuss the growing problem of NCDs, including cancer, diabetes, respiratory and cardiovascular diseases. The Summit succeeded in placing cancer (and other NCDs) on the global political agenda with the recognition that a whole of government and whole of society approach is required to fight the rising burden of NCDs. Specific commitments, such as NCD plans and establishment of NCD units were made by 43 member states of the 133 who made statements. However a strong focus on the need for targets and accountability was made by UN Secretary General Ban Ki Moon.
Spearheading the representation of cancer at the UN Summit was the Union for International Cancer Control (UICC) of which BI is a member. Immediately following the event, UICC gathered a cross-section of leaders in cancer control to share their initial reactions to the Summit with the objective of gathering a common understanding of the implications and opportunities for cancer control in the approved outcomes document (Political Declaration) and identifying immediate next steps to be taken. Further discussion will take place at UICC’s World Cancer Leaders Summit on November 18th in Dublin Ireland.
IN THIS ISSUEBest Practice
• Greece OPU
Updates
• Global Patient Advocacy Leaders Advisory Board
• UN Summit on NCDs
NEWS YOU CAN USEAdvocacy Leaders expressed interest in learning more about Health Technology Assessments. Follow up with your PAGs by providing the link below to the Health Technology Assessment International website where one can find Health Equality Europe: A guide to understanding HTA for Patients and the Public. The guide is available in English, Spanish, Mandarin and Polish.
http://www.htai.org/index.php?id=545
TOP MESSAGES FROM THE UN SUMMIT ON NCDs • Collaborationwithother
NCDs should be maintained moving forward
• Focusonmodelstoensureregional differences are taken into account
• Collaborationacrosssectors – public, private and NGO – is essential
• Needtoengagethe international development organizations
COMING EVENTS:November is Lung Cancer Awareness Month!
World Cancer Leaders Summit, November 18, 2011, Dublin, Ireland
San Antonio Breast Cancer Symposium (SABCS), December 6-10, 2011, San Antonio, Texas
YOUR NEWS:Send us your news and share your best practices! Email: donna.shu@
boehringer-ingelheim.com
VASILIKI TSAGARAKI, MSc, PhD, MBA
ONCOLOGY PRODUCT MANAGER
GEORGE STAMATIS VICE PRESIDENT,
K.E.F.I.
PATIENT ADVOCACY LEADERS AND OPU REPRESENTATIVES AT THE GLOBAL PAR ADVISORY BOARD IN FRANKFURT
