Hildrun Sundseth Head of EU Policy Role of Medical Information in Patient Dialogue

Hildrun Sundseth Head of EU Policy European Cancer Patient Coalition ECPC launched September 2003 More than 170 full EU members Representing over 30 countries Many representing rare cancers but also breast, prostate, lung and colorectal cancer Speaking with "one voice" for all cancer patients

Hildrun Sundseth Head of EU Policy European Cancer Patient Coalition Aims Nothing About Us, Without Us! Promoting the fundamental rights of European cancer patients Increasing cancer patients' influence over European health policy Ensuring timely access to appropriate prevention advice, treatment and care Promoting the advancement of cancer research

Hildrun Sundseth Head of EU Policy Cancer Patient76% Relative / Friend of Cancer Patient 10% Staff, Working for a Patient Advocacy Organisation 14% Keypad Voting (n = 108)

Hildrun Sundseth Head of EU Policy Which type(s) of cancer does your organisation represent? 1.All cancers 2.Breast Cancer 3.Lung Cancer 4.Colorectal cancer 5.Prostate Cancer 6.Gynaecological Cancers - eg.,ovarian, uterine or cervical cancer 7.Haematological Cancers – eg, leukaemia, myeloma, lymphoma 8.Childhood cancers 9.Other

Hildrun Sundseth Head of EU Policy Austria6Italy5 Belgium4Latvia1 Cyprus2Poland12 Czech Republic3Portugal6 Denmark2Slovakia2 Finland1Spain3 France5Sweden6 Germany10Netherlands9 Hungary3UK13 Ireland5(Bulgaria/Romania)6 Country and Numbers Contributing

Hildrun Sundseth Head of EU Policy Austria6Italy5 Belgium4Latvia1 Cyprus2Poland12 Czech Republic3Portugal6 Denmark2Slovakia2 Finland1Spain3 France5Sweden6 Germany10Netherlands9 Hungary3UK13 Ireland5(Bulgaria/Romania)6 Country and Numbers Contributing

Hildrun Sundseth Head of EU Policy Q What is the most important source of accurate and reliable information for cancer patients in your country? 1.Doctors 2.Nurses 3.Pharmacists 4.Family and friends 5.Cancer charities 6.Patient organizations 7.Internet 8.Newspapers and magazines 9.TV and radio 10.Other

Hildrun Sundseth Head of EU Policy Q What is the second most important source of information? 1.Doctors 2.Nurses 3.Pharmacists 4.Family and friends 5.Cancer charities 6.Patient organizations 7.Internet 8.Newspapers and magazines 9.TV and radio 10.Other

Hildrun Sundseth Head of EU Policy PL/PILS – who are they for? Regulators? The public in general? Patients & their carers? The medical profession/pharmacists? The industry? Some other category I havent mentioned? Lawyers?

Hildrun Sundseth Head of EU Policy What are PILs like at present? Patient organisations said that: PILs are too long and complex Information on risk is difficult to understand – qualitative and quantitative information is poorly described. Long lists of possible side effects give a negative impression Although there are some good examples, current practice is highly variable – and much is poor (Beryl Keeley MHRA)

Hildrun Sundseth Head of EU Policy Q Does the package information leaflet that accompanies prescription medicine help patients understand how to take cancer medicines properly and how to prevent and manage side effects? 1.The leaflet provides the information required but it is difficult to understand 2.The leaflet provides the information required and is easy to understand 3.The leaflet does not provide the information required and additional explanation should be provided 4.Dont know

Hildrun Sundseth Head of EU Policy What are our needs? Information – top in every survey The right information at the right time In language we can understand Disease specific Simple written information/diagrams Importance of alternatives to written word - 156,000 calls on day 1 to bowel cancer hotline! Each stage of journey covered Help with informed choices

Hildrun Sundseth Head of EU Policy Q Do cancer patients in your country have easy access to good quality information about their disease and its treatment? 1.Yes – Good quality information is readily available 2.Good information is available but it can be difficult to find 3.Information is available but it is generally of poor quality 4.There is a huge amount of high quality information available, but not in my native language 5.No information is available

Hildrun Sundseth Head of EU Policy Q Are cancer patients in your country able to find the information they need about clinical trials in progress? 1.Yes 2.No 3.Dont know

Hildrun Sundseth Head of EU Policy Q To what degree are cancer patients in your country involved in the treatment decision making process (i.e. decide what treatment they will have)? 1.Patients are involved in treatment decision making to what ever degree they desire 2.Patients are not involved in treatment decision making at all 3.Patients are sometimes allowed to be involved in treatment decision making 4.Dont know

Hildrun Sundseth Head of EU Policy PL/PILs in an ideal world? Product Information Leaflet- for regulators etc and people/patients who like a challenge Patient Information Leaflet - simple version available for the public from medical professionals, pharmacists, internet, EMEA website, etc The challenge - PILs for people with health literacy problems

Hildrun Sundseth Head of EU Policy Some Thoughts on Risk Communication One size does not fit all Depends on their cancer and stage of their journey Many cancer treatments carry high risk - but offer chance of survival Need careful weighing up between patient and his health professional/team

Hildrun Sundseth Head of EU Policy Some Thoughts on Risk Communication Effective Risk Communication is very Challenging Flexible Guidelines for patients and their health professionals for principles of best practice Develop a Dictionary of approved lay terms PL could be improved to convey better risk communication – provide context for risk

Hildrun Sundseth Head of EU Policy Some Thoughts on Risk Communication MHRA general principles Information must support value and purpose of taking medicine and treatment Safety information should be accessible, comprehensive, understandable and balanced