6 research outputs found
Digital orphans: Data closure and openness in patient- powered networks
This is the author accepted manuscript. The final version is available from Palgrave Macmillan via the DOI in this record.In this paper, we discuss an issue linked to data-sharing regimes in patient-powered, social-media-based networks, namely that most of the data that patient users share are not used to research scientific issues or the patient voice. This is not a trivial issue, as participation in these networks is linked to openness in data sharing, which would benefits fellow patients and contributes to the public good more generally. Patient-powered research networks are often framed as disrupting research agendas and the industry. However, when data that patients share are not accessible for research, their epistemic potential is denied. The problem is linked to the business models of the organisations managing these networks: models centred on controlling patient data tend to close networks with regard to data use. The constraint on research is at odds with the ideals of a sharing, open and supportive epistemic community that networksâ own narratives evoke. This kind of failure can create peculiar scenarios, such as the emergence of the âdigital orphansâ of Internet research. By pointing out the issue of data use, this paper informs the discussion about the capacity of patient-powered networks to support research participation and the patient voice.We are indebted to the anonymous reviewers and the editor, who with their supportive and constructive comments helped us to better clarify and highlight the argument of the article. We would like to also thank friends and colleagues who have offered valuable comments and suggestions on early drafts of this paper. We would like to especially thank Barbara Prainsack, Sabina Leonelli, Alena Buyx, and David Teira. This research is funded by the European Research Council (ERC) under the European Unionâs Seventh Framework Programme (FP7/2007â2013)/ERC grant agreement number 335925, and the German Federal Ministry of Education and Research (grant number 01GP1311
Interview based malnutrition assessment can predict adverse events within 6Â months after primary and revision arthroplasty â a prospective observational study of 351 patients
FACTORS ASSOCIATED WITH CLIMATERIC SYMPTOMS IN WOMEN AROUND MENOPAUSE ATTENDING MANOPAUSE CLINICS IN ITALY
Objective: To obtain data on correlates of climacteric symptoms in women around menopause attending menopause clinics in
Italy.
Methods: Since 1997 a large cross sectional study has been conducted on the characteristics of women around menopause
attending a network of first level menopause outpatient\u2019s clinics in Italy. A total of 66,501 (mean age 54.4 years) women are
considered in the present paper.
Results: The odds ratios of moderate and severe hot flashes/night sweats were lower in more educated women and (for severe
symptoms only) in women reporting regular physical activity. Depression, difficulty to sleep, forgetfulness and irritability tended
to be less frequent in more educated women and (depression only) in women reporting regular physical activity. Parous women
reported more frequently these symptoms.
Conclusions: This large study confirms in Southern European population that low education, body mass index and low physical
activity are associated with climacteric symptoms. Parous women are at greater risk of psychological symptoms.
\ua9 2005 Elsevier Ireland Ltd. All rights reserved