How can the patients play their role?

Transcription

1 How can the patients play their role? Cinzia Colombo Laboratory of Medical research for consumer involvement Mario Negri Institute for Pharmacological Research, Milan Firenze, 21 September 2012

2 Overview My research fields the Partecipasalute project An increasing interest in patients involvement Different levels of participation and roles to play: some experiences Open questions

3 My research fields Researcher at the Laboratory of Medical research on consumer involvement, Department of oncology -Training courses for the representatives of patients and citizens (Partecipasalute project) -Dissemination of healthcare information (Partecipasalute website, IN-DEEP project...) -Evaluationof communicationstrategiesand qualityof information (websites and press) -Citizens juries: prostate cancer screening I m not expert in CAM

4 PartecipaSalute: the project Developed from 2003 by Mario Negri Institute Italian Cochrane Centre Zadig editorial and publishing company What for? To boost lay people participation in healthcare debate and consider patients and citizens view points Solicit medical societies attention to patients needs in the production and dissemination of medical information A multidisciplinary scientific committee, composed of representatives of citizens /patients, medical societies, media, researchers Cinzia Colombo, The PartecipaSalute experience

5 Involving citizens, patients and their representatives In the last 20 years national health services, scientific societies, research institutes, clinicians, drug industries have been increasingly interested in involving patients, citizens, their representatives as users of health care services and targets of health awareness campaigns as patients who have a history of disease and are able to manage their care as representatives of volunteer associations, organized groups who participate and support health care and services The degree of involvement varies widely among countries

6 Different levels of participation The participation may range from sharing information, to providing for advice and comments, to deciding together with other people involved, and to make the final decision, going from shared decision making to advice for research priorities, to define outcomes to be studied and decide studies to be funded. Different roles to play in different settings

7 Patients roles in conveying information Disseminate information: patients groups websites, newsletters, phone services Participate in producing information: define topics, contents, means

8 Patients roles in conveying information What What for How 1 Focus groups, online forum to explore how people find and use treatment information Integrating and deriving evidence, experiences and preferences: developing research-based health information applicable to decision making and self- management by people with multiple sclerosis 2 Review panels with people with MS, family, clinicians to test a template summarising research 3 Upload to web of the template adapted for the internet 4 Online survey to evaluate the online model Fondazione IRCCS Istituto Neurologico Carlo Besta, Istituto di Ricerche Farmacologiche Mario Negri Associazione Italiana Sclerosi Multipla, Centre for Health Communication Participation, La Trobe University, MS Australia and National Services Leadership Group,Cochrane MS Review Group, DeakinUniversity Funded by FISM Italian Multiple Sclerosis Foundation, grant 2010

9 Patients roles in clinical trials and research Be recruited in a clinical trial Review the informed consent document (from the very beginning, to the ethic committes) Participate in the design of a clinical trial Participate in defining the research agenda: define a standard set of outcomes and priorities in research

10 Patients roles in defining the research agenda What What for How Core Outcome Measures in Effectiveness Trials Initiative Involve people to develop and apply agreed standardised sets of outcomes to be measured and reported in clinical trials of a specific condition ex. OMERACT project on rheumatology: patients involved in working groups, meetings. To ensure participation, research plain language summaries and education workshops are provided Funded by the MRC North West Hub for Trials Methodology

11 Patients roles in defining the research agenda What a non-profit making initiative What for bring patients, carers, clinicians together to identify and prioritise uncertainties about treatments effects How Defining Priority Setting Partnerships patients, clinicians consulted (meetings, focusgroups) systematic reviews to generate topics and avoid duplication Nominal Group Technique or others to prioritize topics Funded principally by the National Institute for Health Research

12 Patients roles in defining the research agenda What What for The Patient-Centered Outcomes Research Institute non for profit organisation support the engagement of patients in the research to: identify national priorities for research create a research agenda and fund research provide patients, caregivers with useful information How Funded public comment periods to obtain input on reports, policies, initiatives; events and groups to provide feedback. through the Patient-Centered Outcomes Research Trust FundAuthorized by the Congress as part of the Patient Protection Affordable Care Act 2010

13 Patients roles in healthcare services What Citizens juries promoted by Partecipasalute Should the Italian national health service offer prostate cancer screening to all men aged 50 and older? What for BMJ 25 SEPTEMBER 2010 VOLUME 341 How 2-day meeting of a group of citizens discussing this topic, provided with information and experts consultation Funded by AGENAS National Agency for Regional Health Services

14 Open questions Patients, clinicians and researchers speak different languages It s (also) a question of time Paternalism is still there For patients it could be difficult to move from a personal experience to a wider point of view Training is needed also for those who want to undertake effective patients and citizens involvement