HSCNews International 2006
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.
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.)
--------------------------------------------------------------------------------------------------------
|
Issue 33, HSCNews International (November 2006)
The rise and rise of the international carers' movement
The healthcare systems of virtually every nation are struggling to meet the demands placed upon them. Carers help these systems by functioning as low- or un-paid healthcare workers, yet society remains stubbornly unaware of carers' pivotal role. Policymakers often fail to incorporate them in healthcare decision-making; doctors object to including carers in discussions about the healthcare of the person under their care. The international carers' movement, however, has achieved major successes in its two-and-a-half-decade lifespan. The plight of carers is no longer unknown; today, it is in the media spotlight, and subsequently in the political domain. Many countries have assumed legal responsibilities to compensate and support the people who devote part (or all of their life) to caring for someone close to them. The movement has crossed the north-south divide, and is expanding into developing nations. As one carers' campaigner points out: "The whole subject of family care is going to explode". Four key campaigners involved with the subject of caring are interviewed in this issue of HSCNews : Jean Georges, Executive Director of Alzheimer Europe; Liam O'Sullivan , National Development Officer of Care Alliance Ireland; K. R. Gangadharan, Managing Director of the Heritage Hospital, Hyderabad, India; and Gail Hunt, Director of the International Alliance of Carers Organizations (IACO).
31 pages.
The rest of issue 33 of HSCNews looks at members' news and research on the theme of the carers' movement.
Members' news about the carers' movement
- Extra Care [Northern Ireland]. An award for family-carer training programmes.
- Princess Royal Trust for Carers [Scotland]. Seminars on carers' information strategy.
Research on the subject of the carers' movement
- COFACE [Belgium]. A project on the needs and rights of carers.
|
cover of HSCNews International,
issue 33, November 2006
The rise and rise of the
international carers' movement
|
|
|
|
--------------------------------------------------------------------------------------------------------
Issue 32, HSCNews International (September 2006)
Eastern European health campaigners' latest views on patients' rights in their countries
Eastern European patient groups are in the vanguard of campaigns that promote a patients' rights-oriented approach within healthcare systems. This issue of HSCNews outlines several reasons why. HSCNews also interviews four key health campaigners from the region, who explain why their groups believe patients' rights to be a lever capable of improving the health of populations. The four executives are: Aya Lilova, chair of Sofia-based Women Without Osteoporosis (a member of the International Osteoporosis Foundation, IOF); Lubos Olejár, president of Svaz Pacientu Ceské Republiky, the Czech Association of Patients; Roman Sadzuga, president of Polskie Stowarzyszenie Pomocy Osobom Chorym na Szpiczaka, and vice president of Myeloma Euronet; and Katarina Bervar, legal adviser to Pravno-Informacijski Center Nevladnih Organizacij (PIC) [Legal-Information Centre for NGOs (LIC)]. The rest of issue 32 of HSCNews looks at charters, research, and websites on the theme of patients' rights.
22 pages.
Two charters on patients' rights
- Fédération Européenne des Retraites et Personnes Âgées (FERPA) [Belgium]. Charter of Rights of Dependent Persons.
- European Pain Network (EPN) [Belgium]. A charter of intent for pain advocacy.
Research into patients' rights
- Association of Health Education and Promotion of Health (MIA) [Macedonia]. The Rights of the Patients in Macedonia study.
- Association 'Women Without Osteoporosis' [Bulgaria]. A study into patients' rights in Bulgaria.
Websites that provide information about (or are campaigning for) patients' rights
- Association of European Cancer Leagues [Belgium]. Index Foundation [Bulgaria]. European Association for Children in Hospital [virtual]. Active Citizenship Network [Italy]. Patients' Rights Ombudsman [Japan]. Healthy Documents [Malaysia]. Walter Keim [Norway].
|
cover of HSCNews International,
issue 32, September 2006
Patients' rights: the views of health campaigners from Eastern Europe
|
--------------------------------------------------------------------------------------------------------
Issue 31, HSCNews International (August 2006)
Health campaigners' latest views on publicly-available healthcare information
This issue of HSCNews is based on the results of an HSCNews survey of 192 patient advocacy groups worldwide, conducted during summer 2006. The survey attempted to discover which healthcare information health campaigners currently believe the public needs, how that information should best be delivered, what determines whether the public regards the information as trustworthy, and who should be providing the information. Also explored were campaigners' very latest feelings about a subject of continued contention--pharmaceutical companies supplying healthcare information to the public. The survey aimed to learn whether attitudes to the latter had hardened over the last few years, relaxed, or stayed about the same. Respondent campaigners specified that healthcare information should, above all else, allow patients and the public to make informed decisions about their healthcare and treatment. The survey results also showed that campaigners considered their constituencies are in need of more (and better) personally-tailored healthcare information. Campaigners thought that the information should be disseminated through numerous channels. Among new forms of delivery, workshops were their preferred option. Few campaigners approved of mobile (cell) phones or direct marketing as potential new mechanisms for conveying healthcare information. Campaigners spelled out the qualities that they believed made healthcare information trustworthy to their constituencies, and indicated which healthcare stakeholders offer the best information. They also noted the healthcare stakeholders best-placed to endorse healthcare information.
39 pages.
Members' News about healthcare information
- Patient Information Forum [UK]. The Forum is a major resource in the drive to improve patient information.
- Satellife [US]. A merger between two US groups.
Campaigns about healthcare information
- Australian Consumers' Association. The Association draws attention to the cessation of funding for Australia's Adverse Medication Events Telephone Line.
Research on the subject of healthcare information
- National Cancer Institute [US]. Two-yearly survey on the American public's use of cancer information.
- Picker Institute [UK]. A June 2006 report on the degree to which UK doctors are trained to work in partnership with their patients.
Websites providing healthcare information (or campaigning for its provision)
- Health EU [pan-European].
- Eldis [UK].
- Equipment Direct [UK].
- Hypertension Education Foundation [US].
- National Health Freedom Coalition [US].
- Orphanet [France].
- Patient Safety Network [US].
|
cover of HSCNews International,
issue 31, August 2006
Health campaigners' latest views on publicly-available healthcare information |
--------------------------------------------------------------------------------------------------------
Issue 30, HSCNews International (June 2006)
Child health advocacy in 2006
An HSCNews survey of 179 health advocacy groups worldwide (the results of which were published in issue 25/26, January/February 2006) discovered that groups specialising in children's health were expanding faster than any other sector in the health campaigning community. Children's health groups told the survey that they were pushing through five different categories of structural changes. The June 2006 issue of HSCNews therefore considers child health advocacy, and describes how the child health advocacy sector has recently formed to supplement the activities of the more long-standing children's rights and welfare movement (big names within the latter movement include Save the Children, World Vision, and the Global Movement for Children). Child health advocates adopt the same rights-oriented approach espoused by the children's rights groups, but specialise in disease, in treatments, and in healthcare systems. The expansion of the child health sector is, in part, driven by a perceived deterioration in the health of the young worldwide — a trend that policymakers are still only struggling to comprehend, far less address. Analyses of HSCNews datasets has allowed the various types of campaigns run by the children's health movement to be quantified. Examples are provided. Case studies in this issue include descriptions of two extraordinary experiments that aim to bring young people into the political and healthcare debate. The first is a Norwegian project to incorporate disaffected youth into local political processes. The second is an EU website aimed at helping schoolchildren appreciate the functioning of the EU's complex decision-making structures.
29 pages.
Members' News about children's health
- Alkolholpolitik [Switzerland]. An imaginative proposed method of reducing the national consumption of alcohol among the young in Switzerland.
- European Men's Health Forum [Belgium]. UK is first government to sign up to Vienna Declaration on the Health of Men and Boys in Europe.
- International Baby Food Action Network [UK]. Nine US and European groups combine to issue a statement against children's junk food.
Events about children's health
- Eurochild. Non-Formal and Informal Learning Conference: Key Aspects for Social Inclusion of Children and Young People.
- International Forum for Child Welfare. WorldForum2006: Future Directions in Child Welfare.
- Third International Conference on Birth Defects and Disabilities in the Developing World.
Websites
- Decide for Europe [EU]. A website that helps schoolchildren understand the European Union through role play.
- Fundanier [Guatemala]. The Foundation for Children with Renal Disease requests comment on a new website it is building. |
cover of HSCNews International,
issue 30, June 2006 |
--------------------------------------------------------------------------------------------------------
Issue 29, HSCNews International (May 2006)
Article: Health advocacy 2006
This article reflects on the many changes within the health campaigning movement over the past 30 months. Some of the conclusions reached include: health campaigners today comprise more than just patient groups, but many other NGOs as well; the numbers of health advocates have grown explosively at local, national, and international levels; North America continues to account for nearly half of the global total number of healthcare NGOs, with Western Europe fractionally less, at 42%, and Australasia next, at 5% of the world's health campaigners; the combined annual income of the top 42 health campaigners worldwide stands at US$10 billion [Euros 7.8 billion]; many groups have formed partnerships with their peers, or even merged; e-technology has allowed all groups (even the most resource-challenged) to strengthen contact with their grassroots; and the health campaigning movement is taken seriously by governments and international agencies, including the WHO. The movement is having a significant impact on healthcare systems.
15 pages.
Article: Healthcare in 2020
Health Consumer Powerhouse (HCP), a pan-European think tank based in Brussels and Stockholm, suspects that healthcare will be transformed in the future by the introduction of user-centric medical technology. To find out more about how such renovation might occur, HCP asked PatientView [publisher of HSCNews International ] to survey health advocates in EU Member States on the subject. PatientView requested that the survey's 132 respondents ponder the requirements of patients in 2020, and comment on the likely shape of healthcare by that year. This article summarises many of the survey's findings.
14 pages.
Article: Pharma funding of patient organisations — a UK case study of reform
This article returns to the subject of pharmaceutical companies funding patient groups, and considers a new initiative by the Association of the British Pharmaceutical Industry (ABPI). On May 1st 2006, the ABPI introduced a new set of guidelines for its member companies. The updated code prohibits member companies from funding patient groups for the purposes of promoting product sales. In addition, the ABPI wants its industry members to draw up clear contracts with any partner patient groups, and publish the groups' names on their company website. The code has the potential to function as a working template for pharma-patient group relations in other countries.
6 pages.
Members' News
- Broadcasting Patients. PatientView is shortly to launch a new service for campaigning groups to help them gain greater exposure in the media.
- Conquer Fragile-X Foundation [USA]. The group's founder is appointed to a White House committee.
- Stamp Out Stigma [USA]. An update on the group's activities over the past two years.
Publications
Testing Treatments, by Imogen Evans, Hazel Thornton and Iain Chalmers. Opinions offered about the book at its May 2006 launch at the British Library, London [UK].
Letters
HSCNews received a number of letters commenting on issue 28's theme (the future of medical research). Four letters are published in issue 29, from: Annelies den Boer, Project Manager for Access to Medicines, Wemos Foundation [Netherlands]; Metzelf [Netherlands]; Kathy Oliver, Secretary, International Brain Tumour Alliance [UK]; and Tom Zeissen, UK National Co-ordinator and Webmaster, Meeting of Minds Project. |
cover of HSCNews International,
issue 29, May 2006 |
--------------------------------------------------------------------------------------------------------
|
Issue 28, HSCNews International (April 2006)
Article: The influence that health campaigners exert upon medical research
Almost every stage of medical research today is (at least in part) influenced by patients and the public — from the moment when scientists decide their research priorities, to the highlighting of patients' adverse reactions to medicines. This issue of HSCNews International gathers together some (but no means all potential) examples of how health campaigners and citizens are changing the face of medical research. The article notes that patients and the public bring their input to bear in the following ways: through exercises that encourage civic participation; through patient/public consultation; as members of important R&D coalitions; by directly (or indirectly) funding medical R&D; by conducting research themselves; through literary contributions; via health campaigning; and by acting as watchdogs. HSCNews interviews three individuals involved in emotive health campaigns that directly impinge upon medical research. Sir John Sulston, Nobel Prize laureate and former head of the Wellcome Trust's Cambridge, England-based Sanger Institute, believes that "people want their local healthcare systems to work, and for those systems to have feedback and influence, to make them better". Patrick Terry helped to found Washington DC-based PXE International, a rare disease patient organisation, and the Netherlands-headquartered International Genetic Alliance (IGA), an umbrella patient organisation specialising in genetics. Mr Terry contends that "the advocacy movement is growing dynamically across the world. The various difficulties facing each disease-focused group will begin to result in the sharing of solution strategies and efficient knowledge-management tools that can increase the groups' chances of success, and their effectiveness in advancing their missions". Vicky Cowell is Director of Patients' Voice for Medical Advance, a UK voluntary patient group that promotes research into serious illnesses. She insists that "America has now realised that stem cell research is very important. The change owes a lot to a few individuals, such as Christopher Reeve, who campaigned quite vigorously for stem-cell research. Michael J. Fox did the same for Parkinson's disease". The arguments put forward in these three interviews seem to suggest that patient/public involvement in medical R&D issues is only likely to strengthen in scale and potency.
53 pages.
Events related to medical research
- Biovision [France]. A forthcoming conference that embraces global civic contributions in scientific debate.
- Disease Mongering [Australia]. An inaugural conference on the subject.
- European Public Health Alliance [Belgium]. A call for more social relevance in the European Commission's forthcoming Framework Programme 7 (2007-2013).
- Meeting of Minds [Belgium]. A European initiative to involve citizens in the identification of priorities for brain research.
Publications related to medical research
- The World Health Organisation's April 2006 report, Public Health, Innovation and Intellectual Property Rights . Three health advocates applaud the report's recommendations to make medicines more affordable in developing countries. |
cover of HSCNews International,
issue 28, April 2006 |
--------------------------------------------------------------------------------------------------------
|
Issue 27, HSCNews International (March 2006)
Article: Health campaigners talk about medical litigation in the USA and Europe
The World Health Organization has reported that medical errors are reaching unacceptable levels. Today, the only form of redress available to many victims of medical harm is litigation. HSCNews asked seven individual health campaigners or their groups to suggest potential ways forward. Martin Hatlie, of the Chicago-based Partnership for Patient Safety and Consumers Advancing Patient Safety, wrote about what he regarded as one of the USA's most interesting current experiments in the field of medical litigation. New York State-based group PULSE (Persons United Limiting Substandards and Errors) thought that patients need to be better informed, so that they can ask questions, and, if necessary, bring an advocate representing their interests to the doctor's office or hospital. Dr Stephen Schoenbaum, of the New York-based Commonwealth Foundation, proposed a series of interventions to promote patient safety. Across the Atlantic, Dr Gustavo López-Muñoz y Larraz, of the Madrid-based Fundación Pro-Pacientes 'Cristina', felt that one of Europe's biggest problems in this subject area is the wide variation between sentences and levels of damages awarded across the continent. The Copenhagen-based Dansk Selskab for Patientsikkerhed reported that Denmark is now changing its 2003 Patient Safety Act to allow patients and their relatives to report adverse events. Dr Adam Sandauer, of the Warsaw-based Stowarzyszenie Pacjentów Primum non Nocere, argued for several improvements. And Josephine Ocloo, founder of the London-based Break-Through Programme, used the perspective gained from a tragic story of her own to build a case for a new patient-safety agenda in healthcare systems in the UK.
30 pages.
In Focus: Two chronic-disease prevention campaigns
This issue of HSCNews continues with last issue's theme of tackling chronic disease, and looks at a pair of unrelated March 2006 events that each utilised a similar formula. The first was run by the World Diabetes Foundation (WDF) in close collaboration with the International Diabetes Federation (IDF). These two groups were engaged in a concerted attempt to confront the baffling phenomenon of diabetes in Vietnam. The second of the events was a Brussels-based conference held by the European Heart Network (EHN) and the European Society of Cardiology (ESC). The conference was part of a drive by the organising bodies to push the profile of a little-known women's condition--cardiovascular disease--at European level.
16 pages.
Members' News
- Connect For Kids [USA]. 'Talktime Live'--an effective communicational tool.
- European Endometriosis Alliance. Major victory for European endometriosis groups.
Events
- 1st Annual UK Heart Rhythm Congress.
- World Congress of Cardiology 2006.
Advertorial
- Maine Center on Aging [USA]. Request for informational sources on benzodiazepine.
- Michael Moore [USA]. Request for healthcare horror stories.
|
cover of HSCNews International,
issue 27, March 2006
|
--------------------------------------------------------------------------------------------------------
|
Issue 25/26, HSCNews International (January/February 2006)
Article: Health campaigners reflect on 2005 and tell of their plans for 2006 — a global survey
Between December 2005 and January 2006, HSCNews surveyed 179 health campaigners from around the world about their experiences and activities in 2005, and their plans for 2006. Respondent organisations were asked to outline what they believed were their three top success stories of 2005. The answers clearly indicate that patient, disability, carer and other health-oriented groups made key contributions to the improvement of healthcare worldwide. These groups were found to have had a significant impact in nine major subject areas. Respondent groups also reported increases in capacity for 2005 that outstripped those noted in the equivalent HSCNews survey of 2004/2005. On the downside, money worries were common among the groups, and many experienced recruitment problems. The groups told HSCNews about their forthcoming 2006 campaigns, specifying that campaigning will be more targeted and sophisticated than in the past. Groups insisted that they will emphasise the patient perspective in all of their activities, and achieve goals through greater patient empowerment. HSCNews found that many more groups than before are taking an interest in the subject of prevention. Groups are also concentrating on how other healthcare stakeholders can support patients within non-healthcare-oriented environments (such as the home and the school). Health campaigners emphasise that, during 2006, they not only want to influence the legislative agenda, but inspire it, too.
61 pages.
In Part 2 of issue 25/26
In Focus: Six health advocates talk about chronic disease in Europe
At a meeting organised in Brussels in January 2006 by the European Voice (a weekly newspaper that examines European Union affairs), six health advocates from disparate backgrounds were asked to put a case to the European Commission for greater EU action on one or more of six disease areas: alcohol-related conditions; cancer; cardiovascular disease; chronic disease; diabetes; and mental disorders. This article is a record of the arguments put forward by the six speakers.
9 pages.
Members' News
- Help for Headaches [Canada]. A new informational video and find-a-doctor service.
- Impact India Foundation [India]. The group's mobile hospital on a train is 15 years old.
- Irish Patients' Association [Ireland]. Commissioning a report on counterfeit drugs in Ireland.
- Prostate Cancer Coalition of North Carolina [USA]. Emphasising the similarities between prostate and breast cancer.
- Transparency International [Germany]. This year's Global Corruption Report specialises in corruption in healthcare.
New Websites
- http://www.pointofdiagnosis.org.uk
New Events
- 'Mental illness and families: remission and recovery towards a better quality of life.'
- 'The political economy of healthcare: a clinical perspective.'
Letters
- Ifor Evans, Pembrokeshire Local Health Board [Wales].
- Dr Mustafa Sütlas, Patients' and Patients' Relatives' Rights Organisation [Turkey]. |
cover of HSCNews International,
issue 25/26, Parts 1 and 2
|
--------------------------------------------------------------------------------------------------------
How to subscribe to HSCNews International
HSCNews International is a free service to the members of the HSCNetwork International.
If you do not work as a campaigner in the fields of health or disability, but you still wish to receive HSCNews International, you can become a subscriber. Please email your request to info@patient-view.com.
HSCNetwork International . ..HSCNews International in 2009
HSCNews International 2008 .. .HSCNews International 2007 . ..HSCNews International in 2005
HSCNews International in 2004 .. HSCNews International in 2003
|
