Issue 50, HSCNews International (August 2009)
The patient advocacy movement in Italy
What this issue contains:

For its August 2009 issue, HSCNews International conducted two pieces of research to assess the current state and direction of the patient movement in Italy. Firstly, a March-April 2009 online survey of 149 patient groups with differing specialties and located in various parts of the country. Together, the 149 groups claim to represent at least 1.7 million patients. Secondly, one-to-one interviews with six very different Italian patient organisations. Drawing on comments offered by the 149 surveyed groups and the 6 interviewed groups, HSCNews identifies the major obstacles and opportunities faced by Italy’s patient groups. Subjects considered include: the size and shape of the Italian patient movement; financing the Italian patient movement; subject areas of campaigns; the movement’s influence on policymaking; reputation and recognition; and the future of the Italian patient movement. HSCNews 50 concludes with interviews with four Italian national patient organisations: the Associazione Italiana Malati di Alzheimer (AIMA); the Associazione National Malati Reumatici (ANMAR); the Associazione Per Promuovere La Ricerca E La Prevenzione Delle Malattie Oculari Infantili (KOROS); and the Parent Project Onlus; an interview with a regional Italian patient group follows—the Associazione Thalassemici Sardi (ATS)—and with one local group, the Associazione Diabete Mellito e Celiachia (ADMS).

cover of HSCNews International,
issue 50, August 2009
The patient advocacy movement in Italy

Issue 49, HSCNews International (May 2009)
One step closer to patients’ rights
What this issue contains:

The May 2009 issue of HSCNews International, issue 49, contains details on the latest progress at European level towards the adoption of binding codes of patients’ rights. The issue looks at key activities that took place around Europe on European Patients’ Rights’ Day (EPRD), April 18th 2009, and hears from some of the key players. In France, for example, the Assistance Publique Hôpitaux de Paris (AP-HP), the public hospital system of Paris, is implementing patients’ rights, and undertook a survey to study progress. In Italy, to coincide with the EPRD 2009, the local health authority in Rome, ASL Roma, launched a three-year project to incorporate patients’ rights. The issue also considers how the Rome-based civic group, Active Citizenship Network, has almost single-handedly, and in only a few years of campaigning, moved the concept of patients’ rights from an academic idea languishing in the political wilderness to being desirable policy for a large section of the European Parliament. Finally, the issue learns from a number of observers whether they think that European institutions of government (such as the Commission and the Parliament) should become involved in furthering the cause of patients’ rights within sovereign EU countries. An East European politician, a pan-European patient organisation, a health professional, and a patient all give their views.

cover of HSCNews International,
issue 49, May 2009
One step closer to patients’ right

Issue 48, HSCNews International (March 2009)
Patient perspectives on ADHD
What this issue contains:

The March 2009 issue of HSCNews International contains the results of a mid-2008 survey of UK-based people with attention-deficit hyperactivity disorder (ADHD), and their carers and families. 151 individuals replied to this HSCNews survey, which explored the opinions that people affected by ADHD have on the following subjects: quality of life with ADHD – compares unfavourably with other medical conditions; why ADHD is different from other medical conditions; difficulties in making and accessing a diagnosis; sources of information about ADHD; treatment and care; knowledge levels on ADHD among health professionals and society in general; and, finally, recommendations for raising public awareness on ADHD. The survey findings seem relevant not just to ADHD, but also to a number of other diseases/disorders that seek formal clinical acknowledgement – such as chronic fatigue syndrome (CFS), fibromyalgia, repetitive strain injury (RSI), and restless leg syndrome. This issue of HSCNews is divided into two parts. Part I holds the survey findings. Part II (Appendix) lists respondents’ comments, analysed and categorised.

cover of HSCNews International,
issue 48, March 2009
Patient perspectives on ADHD

Issue 47, HSCNews International (January 2009)
How pharma may be able to help patient groups
What this issue contains:

The January 2009 issue of HSCNews International presents the second part of the results from an October-November 2008 global survey of patient groups. 384 patient groups replied to the HSCNews survey, which explored patient groups' latest opinions about the pharmaceutical industry. This issue of HSCNews is devoted to analysing the results generated by the survey's final question: "Apart from offering funds to your organisation, is there any other way that pharmaceutical companies could help your organisation achieve its goals?" Respondents answered that question with hundreds of suggestions--all interesting, some surprising, and most relevant. The suggestions can be distilled down to about nine broad sets of recommendations to pharma. The latter part of the issue lists all of the respondents' suggestions.

cover of HSCNews International,
issue 47, January 2009
How pharma may be able
to help patient groups