MS Patient Summit 2015, Rome; Patient Rights in Research and Treatment - Aliki Vrienniou

1. PATIENT RIGHTS IN
RESEARCH & TREATMENT
ALIKI
VRIENNIOU
INTERNATIONAL
RELATIONS
COUNSELOR
69

2. q EUROPEAN CHARTER OF PATIENTS‘ RIGHTS
q UN CONVENTION ON DISABILITY RIGHTS
(ARTICLE 25 ON HEALTH)
q NATIONAL LEGISLATION
LEGISLATION
70

3. q Rome, November 2002
q Adopted in Brussels 2007
European Charter of
Patients' Rights:
71

4. 72
1. Right to Preventive Measures
2. Right of Access
3. Right to Information
4. Right to Consent
5. Right to Free Choice
6. Right to Privacy and Confidentiality
7. Right to Respect of Patients’ Time
8. Right to the Observance of Quality Standards

5. 73
9. Right to Safety
10. Right to Innovation
11. Right to Avoid Unnecessary Suffering
and Pain
12. Right to Personalized Treatment
13. Right to Complain
14. Right to Compensation

6. Ø E v e r y i n d i v i d u a l h a s t h e r i g h t t o a p r o p e r s e r v i c e i n
o r d e r t o p r e v e n t i l l n e s s .
Ø U N C o n v e n t i o n r e f e r s t o p r o v i d i n g t h o s e h e a l t h s e r v i c e s n e e d e d b y
p e r s o n s w i t h d i s a b i l i t i e s s p e c i f i c a l l y b e c a u s e o f t h e i r d i s a b i l i t i e s ,
i n c l u d i n g e a r l y i d e n t i f i c a t i o n a n d i n t e r v e n t i o n a s a p p r o p r i a t e , a n d
s e r v i c e s d e s i g n e d t o m i n i m i z e a n d p r e v e n t f u r t h e r d i s a b i l i t i e s ,
i n c l u d i n g a m o n g c h i l d r e n a n d o l d e r p e r s o n s .
Ø P e r s o n s w i t h c h r o n i c d i s e a s e s n e e d e a r l y t r e a t m e n t t o p r e v e n t
f u r t h e r d i s a b i l i t y .
Right to Preventive Measures
74

7. Ø Every individual has the right of equal access to the
health services according to their needs and without
discrimination.
Ø An individual suffering from a rare disease has the
same right to the necessary treatments and medication
as someone with a more common disease.
Ø In some countries in Europe patients have no access to
all available treatments as their country has not
approved all of them. So the choice is limited.
Right of Access
75

8. Ø E v e r y i n d i v i d u a l h a s t h e r i g h t t o a c c e s s t o a l l k i n d o f
i n f o r m a t i o n r e g a r d i n g t h e i r s t a t e o f h e a l t h , t h e h e a l t h
s e r v i c e s a n d h o w t o u s e t h e m , a n d a l l t h a t s c i e n t i f i c
r e s e a r c h a n d t e c h n o l o g i c a l i n n o v a t i o n m a k e s a v a i l a b l e .
Ø T h i s i n f o r m a t i o n m u s t m e e t t h e c r i t e r i a o f :
ü accuracy,
ü reliability
ü transparency.
Right to Information
76

9. 77
Ø Who gives this kind of information?
ü public sources (Health Ministry, the Hospital for ex.)
ü private sources (Patient associations, the physician, the
nurse, internet, social media etc)
If you were newly diagnosed, what would your choice be for
accurate, reliable and transparent information on your
disease?

10. Ø T h e v o l u n t a r y c o n s e n t o f t h e p a t i e n t w h e t h e r i t i s a b o u t
t h e r a p y o r a c l i n i c a l t r i a l i s a b s o l u t e l y e s s e n t i a l . I n o t h e r
w o r d s p a t i e n t s ' a p p r o v a l i s a m u s t .
Ø A p a t i e n t m i g h t b e v u l n e r a b l e t o r e s e a r c h t r i a l s . E s p e c i a l l y
a n e w l y d i a g n o s e o n e . T h a t ' s w h y h e m u s t b e a b l e t o h a v e
a c c e s s t o a l l i n f o r m a t i o n t h a t m i g h t e n a b l e h i m t o a c t i v e l y
p a r t i c i p a t e i n :
o the decisions regarding his health
o the therapeutic choices regarding his state of health.
Right to Consent
78

11. 79
Ø Before giving approval, a patient must know about:
ü the conditions
ü the risks
ü the side effects
ü the benefits there might be.
Ø Health care providers and professionals must use a language known to the
patient and communicate in a way that is understandable to persons without
a technical background.
Ø A patient has the right to refuse a treatment or a medical intervention and
to change their mind during the treatment, refusing its continuation.

12. Ø T h e v o l u n t a r y c o n s e n t o f t h e p a t i e n t w h e t h e r i t i s a b o u t
t h e r a p y o r a c l i n i c a l t r i a l i s a b s o l u t e l y e s s e n t i a l . I n o t h e r
w o r d s p a t i e n t s ' a p p r o v a l i s a m u s t .
Ø A p a t i e n t m i g h t b e v u l n e r a b l e t o r e s e a r c h t r i a l s . E s p e c i a l l y
a n e w l y d i a g n o s e o n e . T h a t ' s w h y h e m u s t b e a b l e t o h a v e
a c c e s s t o a l l i n f o r m a t i o n t h a t m i g h t e n a b l e h i m t o a c t i v e l y
p a r t i c i p a t e i n :
o the decisions regarding his health
o the therapeutic choices regarding his state of health.
Right to Free Choice
80

13. 81
Ø Each individual has the right to freely choose from among different
treatment procedures and providers on the basis of adequate
information.
Ø The lack of all available treatments in some countries puts a limit on
the choice of patients.
Ø On the other hand, how much is a newly diagnosed person in a
position to make decisions?

14. Ø Each individual has the right to be free from
harm caused by the poor functioning of health
services, medical malpractice and errors, and
the right of access to health services and
treatments that meet high safety standards.
Right to Safety
82

15. Ø Each individual has the right to diagnostic or
therapeutic programmes tailored as much as
possible to his/her personal needs.
Ø The health services must guarantee, to this end,
flexible programmes, oriented as much as possible
to the individual, making sure that the criteria of
economic sustainability does not prevail over the
right to health care.
Right to Personalized Treatment
83

16. 84
q The above rights aim to guarantee a “high level of human health
protection” and can be used as tools that enable patient organizations
at local, European and International level to monitor their
implementation and claim the highest level of healthcare services.
q They must be recognised and respected independent of financial,
economic or political problems.
q The economic crisis in Europe has a negative impact on healthcare
services, violating the rights of patients.
Conclusions

17. 85
Thank you !

18. MS
Pa&ent
Summit
-­‐
Rome
86
Friday, May 22nd, 2015 Summit Moderator: Kaz Aston (UK)
08:30
08:40
09:20
10:00
10.40
Welcome & Introduction - Antonella Moretti (AISM, It) & Anna Chiara Rossi (Novartis, It)
Plenary session
• Patient rights in research and treatment - Dr Vittorio Martinelli (It), Aliki Vrienniou (Gr)
• Influencing the direction of healthcare decision-making - Mary Baker (UK)
• The ‘Expert’ Patient - Jean Hardiman-Smith (UK)
Panel discussion
11.15
Break
11.30
Breakout sessions
• Patient rights in research and treatment (co-facilitator - Michele Messmer (It))
• Influencing the direction of healthcare decision-making (co-facilitator - Silvia Traversa (It))
• The ‘Expert’ Patient (co-facilitator - Federica Balzani (It))
12.30
MS World Café
Best Practice Sharing Fair for Patient Advocates
13.00
Buffet Lunch
14:00
Breakout sessions (continued)
15:00
Breakout group feedback to plenary
15:55
Closing Remarks – Antonella Moretti (AISM, It) & Anna Chiara Rossi (Novartis, It)
16.00
Meeting Close
Raising
standards;
The
voice
of
people
with
MS