HSCNews International 2007
Health and Social Campaigners' News International is a unique, monthly service designed to give the 4,000 members of the Health and Social Campaigners' Network practical information about the policies and activities of patient and disability groups worldwide.
HSCNews International is available on subscription to members of the public who may not qualify for membership of the HSCNetwork International but who are interested in reading about health and social campaigners. Individual issues of HSCNews can also be purchased. For details, Click here
Issues of HSCNews International contain:
· Independent and balanced analysis of health advocacy worldwide ( HSCNews concentrates on what advocates and their groups are thinking, what they are doing, and what they plan to do).
· A focus on topics at the top of the agenda of patient, disability and carers' groups.
· Interviews on policy and strategy matters with leading campaigners.
· Summary results of in-house surveys. (These simple surveys are conducted among the databank established during the setting up of the HSCNetwork, which includes 70,000 health advocacy representatives and patients from around the globe. The surveys enable health and disability campaigners to express their views on subjects of importance to them, and results are published in HSCNews International.)
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Issue 40, HSCNews International (December 2007)
Cancer care and prostate cancer care: the patient perspective
What this issue contains:
The first part of this issue of HSCNews reports the results of a global survey of patients with prostate cancer, conducted by PatientView (publisher of HSCNews ) between September 2007 and October 2007. The survey (which was initiated and financed by Hill & Knowlton, an international public relations company) looks at the challenges facing men diagnosed with prostate cancer. The 312 patients with prostate cancer who replied to the survey tell about their experiences within their country's healthcare system, about their diagnosis and treatment, and about their quality of life. Although the patients report being largely satisfied with their treatment, they also argue that much more could be done to improve the quality of their care.
The second part of this issue of HSCNews looks at a November 2007 meeting in Brussels organised by the European Society for Medical Oncology (ESMO), a body that represents the interests of medical oncologists across Europe. Over 100 national patient cancer groups from across the world came together at this event to talk about how they could be better advocates. |
cover of HSCNews International,
issue 40, December 2007
Cancer care and prostate cancer care:
the patient perspective
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Issue 39, HSCNews International (October 2007)
Patients' quality-of-life concerns: the conditions and the countries
What this issue contains:
This, the second in a pair of HSCNews reports exploring patients' quality-of-life concerns, concentrates on how patients' perceptions of their quality of life varies according to their medical condition and the country in which they live. Drawing on data from a March-June 2007 HSCNews survey of 1,200 patients worldwide, and a mid-2007 QALYity Project survey of 2,200 patients in England and Wales, the report scrutinises both shared perspectives and differences of opinion on what constitutes good quality of life for patients--as advised by patients from Australia, Canada, Denmark, England and Wales, Ireland, Norway, Northern Ireland and Scotland, Slovenia, and the USA. The report then considers how having a particular disease, condition or disability can also influence patients' attitudes to quality of life. The report looks at the quality of life obtained by patients from the following eight disease/disability subject areas: arthritis, autoimmune disorders, cancer, diabetes, endocrine disorders, epilepsy, mental health, and neurological conditions. |
cover of HSCNews International,
issue 39, October 2007
Patients' quality-of-life concerns:
the conditions and the countries
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Issue 38, HSCNews International (August 2007)
Patients and the future of clinical trials
What this issue contains:
Healthcare systems today are moving very slowly in the direction of trying to make healthcare more patient-oriented. One possible method of doing so is to engage patients in the whole healthcare process--in particular, in the direction and management of clinical research. This issue 38 of HSCNews reports on a June 25th 2007 seminar presented by the Oxford, England-based James Lind Alliance (JLA) and the London-based medical journal, The Lancet. The meeting, which took place at London's Royal Society of Medicine, posed a single main question: how can clinical trialists serve the needs of clinicians and patients more effectively? Ten prestigious academics, clinicians, journalists, and patient and consumer advocates gave their views on the subject. The seminar and its 150 attendees examined whether clinicians are conducting the right trials, and wondered if the right research questions are being addressed in an appropriate manner. Importantly, the event explored ways of identifying research priorities between patients, clinicians, and researchers. The key messages coming out of the meeting are contained in this issue of HSCNews. |
cover of HSCNews International,
issue 38, August 2007
Patients and the future of clinical trials
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Issue 37, HSCNews International (June 2007)
Quality of life: the patients' view
What's new in this issue:
- Details about an HSCNews March-June 2007 global survey on quality-of-life issues (from the viewpoint of patients themselves). 1,220 respondent patients and people with a disability comment on what is important for their quality of life (in the context of medical treatments and other forms of clinical and social interventions).
- An analysis of patients' quality-of-life issues according to age, gender, income and location.
SUMMARY: The QALYity Project, a newly-formed UK-based alliance of prestigious patient groups, medical professionals, academics, and journalists, aims to produce authoritative patient-inspired definitions of the phrase 'patients' QoL'. The Project is UK-oriented at the moment. Therefore, the Project permitted HSCNews to use QALYity Project survey instruments to ask patients worldwide about their quality-of-life concerns. Issue 37 contains the first of two HSCNews reports on the survey findings. Intriguing results include: only 30% of the 1,220 respondent patients and people with a disability believe that their quality of life today is "very good" or "excellent" (given their medical condition or disability); patients state that quality of life can be influenced by the type of environment in which they live--though the amount of influence varies from country to country; and financial status also seems to have a clear impact upon patients' perceptions of their quality of life. |
cover of HSCNews International,
issue 37, June 2007
Quality of life: the patients' view
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Issue 36, HSCNews International
(April 2007)
The future of healthcare in Europe
What's new in this issue:
- A summary of discussions about a forthcoming European Union Health Strategy.
- A summary of discussions about the current state of patients' rights in Europe.
SUMMARY: European countries aspire to provide universal healthcare and to uphold principles of social solidarity. In practice, however, standards of health and healthcare services vary widely across Europe. Discrepancies in care can translate into increased or decreased levels of sickness or death. For years, health campaigners have lobbied European policymakers, calling for deficiencies in healthcare access and quality to be ironed out throughout Europe. Until now, Euro-politics and immovable legislative barriers have apparently inhibited EU interference in Member States' healthcare systems. But, by the end of 2007, the European Commission plans to have developed a wide-ranging Health Strategy for Europeans--if only because healthier Europeans also mean wealthier ones. This issue of HSCNews reviews and analyses two different types of discussion on the future of healthcare in Europe. Both took place in Brussels during March 2007:
· Pages 8-15: the European Voice conference, 'Healthcare 2007: Diagnosing our Future', Brussels, March 19th-20th 2007.
· Pages 18-27: Active Citizenship Network's conference, 'European Patients' Rights Day', Brussels, March 29th 2007.
The outcome of EU-level debates on the subject of an overarching European health strategy has relevance not only to EU countries, but to any region or nation that seeks to maintain an equitable healthcare system via the hand of central government. |
cover of HSCNews International,
issue 36, April 2007
In Europe: the future of healthcare and patients' rights |
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Issue 35, HSCNews International (February 2007)
Giving the grassroots their say: An analysis of the various processes worldwide for consulting patients and the public
What's new in this issue:
- A summary of some of the most important attempts around the world to incorporate the views of patients and the public into healthcare practice and legislation.
- Interview with eight individuals from around the world who are in some measure engaged with patient-involvement initiatives. SUMMARY: Governments are becoming ever more open to incorporating the views of patients and the public into health legislation. But despite disparate efforts, health policymakers are still uncertain about how best to gather together the opinions of the grassroots in a systematic and meaningful way. Significant barriers block the path to the canvassing of public/patient attitudes. Pages 6-26 of this issue of HSCNews examine the different patient-involvement approaches taken in Brazil, the European Union, the Netherlands, the UK, and the US, which include: straightforward advocacy and lobbying; government consultation processes; stimulating market-driven consumer-led healthcare systems; and involvement by democratic processes. • Pages 27-31: interview with Anne Montgomery, Health Policy Associate, the Washington DC-based Alliance for Health Reform.
• Pages 32-34: interview with John Baron MP, Shadow Health Minister, Conservative Party, UK.
• Pages 35-38: interview with Philip Tod, Spokesperson, the European Commission's Directorate General for Health and Consumer Protection (DG Sanco).
• Pages 39-41: interview with Nicola Bedlington, Director, the Brussels-based European Patients' Forum (EPF).
• Pages 42-43: interview with Sandra Mello Perin, Representative, the Porto Alegre-based Grupo de Apoio à Prevenção à AIDS (GAPA).
• Pages 44-48: interview with Mari Fresu, Project Coordinator, Brussels-based Mental Health Europe (MHE).
• Pages 49-50: interview with Lucy Betterton, Associate Director-Communications, the National Institute of Health and Clinical Excellence (NICE), UK.
• Pages 51-55: interview with Anita Direcks, Senior Communications Adviser, the Utrecht-based Nederlandse Patiënten Consumenten Federatie (NPCF).
• Pages 56-57: a letter from Brian Buckley, health services researcher and Chair of the Board of Trustees of London-based In contact, writes to HSCNews to draw attention to a forthcoming partnership of patients, carers and clinicians aimed at influencing research into one particular medical condition, urinary incontinence. |
cover of HSCNews International,
issue 35, February 2007
An analysis of various processes worldwide for consulting patients and the public |
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Issue 34, HSCNews International
(January 2007)
The funding of health campaigners
What's new in this issue:
- League table of the 50-richest health campaigning groups, 2005-2006.
- Mini-poll of patient groups on the hardships of funding, 2006-2007.
- Analysis of the codes of conduct of five different patient groups.
- Interview on funding with the Lega Italiana Fibrosi Cistica.
SUMMARY:
• Despite a massive flow of money into the buoyant charity sector during 2006, raising sufficient funds remains a major problem for patient organisations and other health campaigners.
• Pages 6-17 look at why patient organisations, in particular, are turning to big business and pharmaceutical companies for respite. And why such groups have opened themselves up to charges of being in the pocket of pharma.
• Pages 19-26 outline the results of a December 2006 HSCNews mini-poll of 35 health campaigners. These groups discuss why they experience difficulties generating income.
• Pages 27-38 examine patient-group codes of conduct, using five health campaigners as case studies. The five have tried to resolve the tensions inherent in retaining independence and accepting sponsorship. The article analyses how the codes of conduct differ, and notes some outstanding questions that need to be answered. The five groups are:
- European Organization for Rare Diseases (Eurordis).
- Myeloma Euronet.
- Depression Bipolar Support Alliance (DBSA).
- Consumers' Health Forum of Australia (CHF).
- H E A R T UK.
• Pages 39-47 give two case studies: the Italian Lega Italiana Fibrosi Cistica, and the Californian Taproot Foundation. The two organisations have, for the most part, overcome (for themselves, at least) the problems of financial turbulence that plague many health groups.
• Pages 48-50 carry a letter from two convenors of the Australian group Children of Mentally-Ill Consumers, who comment on one aspect of the burgeoning international carers' movement [covered in HSCNews, issue 33]. |
cover of HSCNews International,
issue 34, January 2007
The funding of health campaigners |
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