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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
76%
Relative / Friend of Cancer
Patient
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.
7.
8.
9.
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%
15%
7%
3% 2%
0%
1%
1 2 3 4 5 6 7 8 9
Hildrun Sundseth
Head of EU Policy
Country and Numbers Contributing
Austria
Belgium
Cyprus
6
4
2
Italy
Latvia
Poland
5
1
12
Czech Republic
Denmark
Finland
France
3
2
1
5
Portugal
Slovakia
Spain
Sweden
6
2
3
6
Germany
Hungary
Ireland
10
3
5
Netherlands
UK
(Bulgaria/Romania)
9
13
6
Hildrun Sundseth
Head of EU Policy
Country and Numbers Contributing
Austria
6
Italy
5
Belgium
4
Latvia
1
Cyprus
Czech Republic
2
3
Poland
Portugal
12
6
Denmark
2
Slovakia
2
Finland
1
Spain
3
France
5
Sweden
6
Germany
10
Netherlands
9
Hungary
3
UK
13
Ireland
5
(Bulgaria/Romania)
6
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.
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%
8%
0% 2%
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.
2.
3.
4.
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%
22%
15%
1
Hildrun Sundseth
Head of EU Policy
2
11%
3
4
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.
3.
4.
5.
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%
26%
10%
2%
1
Hildrun Sundseth
Head of EU Policy
2
3
0%
4
5
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.
2.
3.
4.
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%
21%
8%
1
Hildrun Sundseth
Head of EU Policy
2
4%
3
4
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
Hildrun Sundseth
Head of EU Policy