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

PATIENT RIGHTS IN RESEARCH & TREATMENT

ALIKI VRIENNIOU

INTERNATIONAL

RELATIONS

COUNSELOR

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q  EUROPEAN CHARTER OF PATIENTS‘ RIGHTS q  UN CONVENTION ON DISABILITY RIGHTS (ARTICLE 25 ON HEALTH)

q  NATIONAL LEGISLATION

LEGISLATION 70

q  Rome, November 2002 q  Adopted in Brussels 2007

European Charter of Patients' Rights:

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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

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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

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 UN 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 am 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 tme 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

Ø Every i nd i v idua l has the r i ght of equa l access to the hea l th serv i ces accord ing to the i r needs and w i thout d i scr im inat i on .

Ø An ind i v idua l suffer i ng from a rare d i sease has the same r i ght to the necessary treatments and med icat i on as someone w i th a more common d i sease.

Ø In some countr ies i n Europe pat ients have no access to a l l ava i l ab le treatments as the i r country has not approved a l l of them. So the cho i ce i s l im i ted.

Right of Access 75

Ø Eve ry i n d i v i d ua l ha s the r i g h t t o a c ce s s t o a l l k i n d o f i n f o rmat i o n r ega rd i n g the i r s t a te o f hea l t h , t he hea l t h s e r v i c e s a nd how t o u se them, and a l l t ha t s c i e n t i f i c r e sea r ch and t e chno l o g i c a l i n n o va t i o n makes a va i l ab l e . Ø Th i s i n f o rmat i o n mus t meet the c r i t e r i a o f :

ü accuracy, ü reliability ü transparency.

Right to Information 76

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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?

Ø  The v o l u n t a ry c o n sen t o f the pa t i e n t whe the r i t i s abou t the rapy o r a c l i n i c a l t r i a l i s ab s o l u t e l y e s sen t i a l . I n o the r wo rd s pa t i e n t s ' a pp r o va l i s a mus t . Ø A pa t i e n t m i gh t be v u l n e rab l e t o r e sea r ch t r i a l s . E spec i a l l y a new l y d i a g n o se o ne . Tha t ' s why he mus t be ab l e t o ha ve a c ce s s t o a l l i n f o rmat i o n tha t m i gh t e nab l e h im t o a c t i v e l y pa 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

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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.

Ø  The v o l u n t a ry c o n sen t o f the pa t i e n t whe the r i t i s abou t the rapy o r a c l i n i c a l t r i a l i s ab s o l u t e l y e s sen t i a l . I n o the r wo rd s pa t i e n t s ' a pp r o va l i s a mus t . Ø A pa t i e n t m i gh t be v u l n e rab l e t o r e sea r ch t r i a l s . E spec i a l l y a new l y d i a g n o se o ne . Tha t ' s why he mus t be ab l e t o ha ve a c ce s s t o a l l i n f o rmat i o n tha t m i gh t e nab l e h im t o a c t i v e l y pa 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

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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?

Ø  Each indiv idual 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

Ø Each ind iv idua l has the r ight to d iagnost ic or therapeut ic programmes ta i lored as much as poss ib le to h is/her persona l needs. Ø The hea lth serv ices must guarantee, to th is end, f lex ib le programmes, or iented as much as poss ib le to the ind iv idua l , making sure that the cr iter ia of economic susta inab i l i ty does not preva i l over the r ight to hea lth care.

Right to Personalized Treatment 83

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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

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Thank you !

MS  Pa&ent  Summit  -­‐  Rome    

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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