Role of Medical Information in Patient Dialogue

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 Keypad Voting (n = 108) Cancer Patient Relative / Friend of Cancer Patient 76% 10% Staff, Working for a Patient Advocacy Organisation 14% Hildrun Sundseth Head of EU Policy Which type(s) of cancer does your organisation represent? 1. 2. 3. 4. 5. 6. All cancers Breast Cancer Lung Cancer Colorectal cancer Prostate Cancer Gynaecological Cancers - eg.,ovarian, uterine or cervical cancer Haematological Cancers – eg, leukaemia, myeloma, lymphoma Childhood cancers Other 31% 26% 16% 3% 2% 15% 7% 0% 1% 7. 8. 9. 1 2 3 4 5 6 7 8 9 Hildrun Sundseth Head of EU Policy Country and Numbers Contributing Austria Belgium Cyprus Czech Republic Denmark Finland France Germany Hungary Ireland 6 4 2 3 2 1 5 10 3 5 Italy Latvia Poland Portugal Slovakia Spain Sweden Netherlands UK (Bulgaria/Romania) Hildrun Sundseth Head of EU Policy 5 1 12 6 2 3 6 9 13 6 Country and Numbers Contributing Austria Belgium Cyprus Czech Republic Denmark Finland France Germany Hungary 6 4 2 3 2 1 5 10 3 Italy Latvia Poland Portugal Slovakia Spain Sweden Netherlands UK 5 1 12 6 2 3 6 9 13 Ireland 5 (Bulgaria/Romania) Hildrun Sundseth Head of EU Policy 6 Q What is the most important source of accurate and reliable information for cancer patients in your country? 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. Doctors Nurses Pharmacists Family and friends Cancer charities Patient organizations Internet Newspapers and magazines TV and radio Other 56% 18% 9% 12% 2% 0% 1% 0% 1% 2% 1 2 3 4 5 6 7 8 9 10 Hildrun Sundseth Head of EU Policy Q What is the second most important source of information? 1. 2. 3. 4. 5. 6. 7. 8. Doctors Nurses Pharmacists Family and friends Cancer charities Patient organizations Internet Newspapers and magazines 9. TV and radio 10. Other 42% 21% 12% 0% 2% 8% 13% 1% 1% 1% 1 2 3 4 5 6 7 8 9 10 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 haven’t 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 The leaflet provides the information required and is easy to understand The leaflet does not provide the information required and additional explanation should be provided Don’t know 52% 2. 3. 22% 15% 11% 4. 1 2 3 4 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. 2. Yes – Good quality information is readily available Good information is available but it can be difficult to find Information is available but it is generally of poor quality There is a huge amount of high quality information available, but not in my native language No information is available 62% 3. 4. 26% 10% 2% 1 2 3 4 0% 5 5. 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? 66% 1. Yes 2. No 3. Don’t know 23% 10% 1 Hildrun Sundseth Head of EU Policy 2 3 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 Patients are not involved in treatment decision making at all Patients are sometimes allowed to be involved in treatment decision making Don’t know 66% 2. 21% 8% 1 2 3 4% 4 3. 4. Hildrun Sundseth Head of EU Policy PL/PILs in an ideal world? • Product Information Leaflet • Patient Information Leaflet for regulators etc and people/patients who like a challenge simple version available for the public from medical professionals, pharmacists, internet, EMEA website, etc problems Hildrun Sundseth Head of EU Policy • The challenge - PILs for people with health literacy 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 Hildrun Sundseth Head of EU Policy