Milano, 27 febbraio 2004

1. The Cochrane Collaboration: Why consumers ?Silvana SimiIstituto di Fisiologia Clinica, CNRThe Cochrane Collaboration Milano, 27 febbraio 2004

3. WHY PATIENTS HAVE NOT TO REMAIN SILENT Patientshave to give voice to their ideas - have the right to have their will and experience respected

4. WHY PATIENTS HAVE NOT TO REMAIN SILENT • - have the right to have their will and experience respected • can bring to the table a valuable perspective which comes from being the receiving end of health services Patients have to give voice to their ideas

5. “Patients with long term medical conditions become the expertson living with those conditions, even if they aren’t necessarily the experts on the science of their treatment. They are also repeated users of the health care system and are an incredibly under-used resource in how that system actually works for, or sometimes against, them.“ Forbes B.A. BMJ 28 March 2003

6. ……Cosa ne pensano i malati?I malati hanno le loro buone ragioni nel sostenere la ricerca.Hanno però il diritto di esprimere il loro parere? Si, ma forse pochi hanno il coraggio di esporsi. Oppure no, forse perché portare all’attenzione dei mass media le ragioni dei malati colpirebbe la gente al cuore e l’opinione pubblica potrebbe orientarsi verso orizzonti più liberi per la ricerca...….. Anche io che sono paralizzato forse non sono obiettivo,ma sono una persona ed ho il diritto a dire la mia,sia come cittadino sia perché “mi sento” direttamente interessato all’argomento.Incominciate a darci spazio per far sentire la nostra opinione. A. La Rocca. La Repubblica 14 febb 2004

7. have the right to have their will and experience respected • can bring to the table a valuable perspective which comes from being the receiving end of health services • can determine new directions and priorities WHY PATIENTS HAVE NOT TO REMAIN SILENT Patients have to give voice to their ideas

8. “… if I lived in a society where being in a wheelchair was no more remarkable than wearing glasses and if the community was completely accepting and accessible, my disability would be an inconvenience and not much more than that. It is society which handicaps me, far more seriously and completely than the fact that I have spina bifida.” A. Davis: From where I sit London, Triangle, 1989

9. WHY PATIENTS HAVE NOT TO REMAIN SILENT Patients have to give voice to their ideas • havethe right to have their will and experience respected • can bring to the table a valuable perspective which comes from being the receiving end of health services • can determine new directions and priorities • can focus on issues that researchers are not aware of

10. Psychotherapy, and medicine as well, could not deal much with disability, so it tries to compensate and improve the self-perception and esteem, as if its improvement could ameliorate also the social role and social relationships. This is only partially true: most of my self- perception is based on social role and relationships, so to choose self perception as a target could be too easy and, at the same time, misleading. Better to work on interventions on quality of life of patients, through not only the obvious removal of architectural barriers (although if I can go out on my wheelchair, mostly with someone, I feel better than after a psychotherapy sitting), but, for instance, a remodeling of the family life: what does the family ask to the patient, what a family/ society is able to give him back. I am aware these are mainly social/ politic items , but focusing mainly on self perception could contribute to make “orphans “ the other two. Chiara R., 2002, reviewing Cochrane protocol “ Psychological interventions in MS”

11. WHY PATIENTS HAVE NOT TO REMAIN SILENT Patients have to give voice to their ideas - are have the right to have their will and experience respected • can bring to the table a valuable perspective which comes from being the receiving end of health services • can determine new directions and priorities • can focus on issues that researchers are not aware of • are “markers” of how services are working

12. “We are usually extremely knowledgeable about the impact of ill-health on our lives and the quality of our lives. These factors often influence our decisions making processes for treatment and care and, when available, social health care. We can also point out where and when health care systems are not working.” Mc Crory P. BMJ 28 March 2003

13. WHY PATIENTS HAVE NOT TO REMAIN SILENT Patients have to give voice to their ideas • have the right to have their will and experience respected • can bring to the table a valuable perspective which comes from being the receiving end of health services • can determine new directions and priorities • can focus on issues that researchers are not aware of • are markers of how services are working • can build a partnership between who makes medicine and who uses it

14. Consumer’srights in developed countries • To be informed • To safety • To choose • To be heard • To redress • To education • To a healthy environment • To satisfaction W.H.O.

15. Francis Bacon (1564-1626) KNOWLEDGE IS POWER

16. RIGHTTO INFORMATION/EDUCATION There is the need of information being • available • accessible • acceptable • applied • audited S.Pluck Cochrane Consumer Network, 2001

17. WhyCochrane? • The Cochrane Collaboration develops systematic reviews of best evidence on efficacy and safety of healthcare interventions • Independence • Transparency • Free from ideologies and prejudices • Free from financial interests • Synopses for consumers

18. Why consumers in Cochrane? • To increase consumers’ capacity to participate • To make information accessible to consumers (antidote to jargon) • To share good evidence-based information with other consumers • To make a difference between Cochrane reviews and healthcare research • To get past language barriers • Consumer inclusion at any step of health system (a patient-centred medicine)

19. Autonomy (what the competent, informed patient wants) trumps beneficence (what the doctor thinks best for the patient) in all the circumstances .

20. Puttingpatients first ?

22. A contract for health, 1244 In the name of the Lord, amen. I, Rogerio de Bruch of Bergamo, promise and agree with you, Bosso the wool carder, to return you to health and to make you improve from the illness that you have in your person, that is in your hand, foot, and mouth, in good faith, with the help of God, within the next month and a half, in such a way that you will be able to feed yourself with your hand and cut bread and wear shoes and walk and speak much better than you do now. I shall take care of all the expenses that will be necessary for this; and at that time, you shall pay me seven Genoese lire; and you shall not eat any fruit, beef, pasta, whether boiled or dry or cabbage. If I do not keep my promises to you, you will not have to give me anything. And I, the aforementioned Bosso, promised to you, Rogerio, to pay you seven Genoese lire within three days after my recovery and improvement.

28. The more patients will be involved the more health research and health services will grow in democracy and will be tailored on people’s needs.

29. ! ! Putting patients first

30. La libertà non è uno spazio libero La libertà è partecipazione Giorgio Gaber