PartecipaSalute, an Italian project to involve lay people, patients’ associations and scientific‐medical representatives in the health debate

Mosconi, Paola; Colombo, Cinzia; Satolli, Roberto; Liberati, Alessandro

doi:10.1111/j.1369-7625.2007.00444.x

Cited by 31 publications

(34 citation statements)

References 19 publications

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“…Overall, as highlighted by the James Lind Alliance (Chalmers & Glasziou, 2009), we have very few opportunities for the medical community and patients and consumers to "work together to identify areas of uncertainty in medicine and define priorities for clinical research." The scientific and medical community still often fails to see patients and consumer groups as partners with "equal rights and weight" (Mosconi, 2006). Actively involving consumers brings a responsibility to be respectful of each others' knowledge, to share information, and to openly declare conflicts of interests.…”

Section: Discussionmentioning

confidence: 99%

International Health Consumers in The Cochrane Collaboration

Wale

Colombo

Belizán

et al. 2010

Journal of Ambulatory Care Management

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The Cochrane Consumer Network (CCNet) is an international organization of volunteers, operating through the Internet, to enhance the accessibility and relevance of Cochrane systematic reviews and to promote evidence-based health care through consumer and community participation. This article presents the accomplishments and challenges of involving consumers in The Cochrane Collaboration as indicated by 2 surveys (CCNet-led evaluation 2006 and External consultant-led evaluation 2009). While consumers are effectively involved in commenting on prepublished Cochrane systematic reviews, opportunities exist to strengthen consumer participation in prioritizing, producing, and disseminating Cochrane systematic reviews and in promoting greater understanding and application of evidence-based health care in various countries and cultures. It is important that consumer participation adds value for all involved in the process and that it is developed in partnership.

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Section: Discussionmentioning

confidence: 99%

International Health Consumers in The Cochrane Collaboration

Wale

Colombo

Belizán

et al. 2010

Journal of Ambulatory Care Management

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“…Italian developments include the use of citizen juries to deliberate on health care decisions like prostate cancer screening [46], [47]. Public participation in discussions of policy options requires knowledge and understanding of the complexity of the health care system [48].…”

Section: Discussionmentioning

confidence: 99%

Health Systems and Sustainability: Doctors and Consumers Differ on Threats and Solutions

2011

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BackgroundHealthcare systems face the problem of insufficient resources to meet the needs of ageing populations and increasing demands for access to new treatments. It is unclear whether doctors and consumers agree on the main challenges to health system sustainability.MethodologyWe conducted a mail survey of Australian doctors (specialists and general practitioners) and a computer assisted telephone interview (CATI) of consumers to determine their views on contributors to increasing health care costs, rationing of services and involvement in health resource allocation decisions. Differences in responses are reported as odds ratios (OR) and 99% confidence intervals (CI).ResultsOf 2948 doctors, 1139 (38.6%) responded; 533 of 826 consumers responded (64.5% response). Doctors were more concerned than consumers with the effects of an ageing population (OR 3.0; 99% CI 1.7, 5.4), and costs of new drugs and technologies (OR 5.1; CI 3.3, 8.0), but less likely to consider pharmaceutical promotional activities as a cost driver (OR 0.29, CI 0.22, 0.39). Doctors were more likely than consumers to view ‘community demand’ for new technologies as a major cost driver, (OR 1.6; 1.2, 2.2), but less likely to attribute increased costs to patients failing to take responsibility for their own health (OR 0.35; 0.24, 0.49). Like doctors, the majority of consumers saw a need for public consultation in decisions about funding for new treatments.ConclusionsAustralian doctors and consumers hold different views on the sustainability of the healthcare system, and a number of key issues relating to costs, cost drivers, roles and responsibilities. Doctors recognise their dual responsibility to patients and society, see an important role for physicians in influencing resource allocation, and acknowledge their lack of skills in assessing treatments of marginal value. Consumers recognise cost pressures on the health system, but express willingness to be involved in health care decision making.

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“…• A convenience sample of 16 national associations 1 or federations of patients involved in the Mario Negri Institute PartecipaSalute project [22]. …”

Section: Methodsmentioning

confidence: 99%

Open-access clinical trial registries: the Italian scenario

Mosconi

Roberto

2012

Trials

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BackgroundCitizens, patients and their representatives are increasingly insisting on working with health professionals to organize and discuss research protocols. The International Committee of Medical Journal Editors recommended setting up a public clinical trial registry where anyone can find key information about a trial. Around the world, governments have, in fact, now begun to legislate mandatory disclosure of all clinical trials. The aims of the present survey were to assess the availability of clinical trial registries for Italian citizens and to examine the transparency of the data items reported.MethodsThe availability of open-access clinical trial registries was surveyed on a sample of 182 websites, including research institutes and centers of excellence (IRCCS-teaching hospitals), hospitals and associations. For each registry we downloaded a sample of two trials to assess the correspondence of the data items reported. Results from the Italian and international registries were compared.ResultsFifteen percent of the sample had an open-access registry of clinical trials. Comparison of the data items available, in terms of completeness and transparency, from institutional and international registries indicated wide variability.ConclusionsItalian citizens, patients and their associations have scant access to local registries of clinical trials, and international registries are generally more informative. On the European level, advocacy and lobby actions are needed among citizens and patients to boost the diffusion of open-access clinical trial registries without language barriers, thereby facilitating participation, access to information, and the coordination of clinical research.

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PartecipaSalute, an Italian project to involve lay people, patients’ associations and scientific‐medical representatives in the health debate

Cited by 31 publications

References 19 publications

International Health Consumers in The Cochrane Collaboration

International Health Consumers in The Cochrane Collaboration

Health Systems and Sustainability: Doctors and Consumers Differ on Threats and Solutions

Open-access clinical trial registries: the Italian scenario

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