The Health and Social Campaigners' Network International (HSCNetwork International) is a virtual organisation designed to provide information to individuals who work as campaigners in health and social care. The network was launched in September 2003 with the support of 26 founding members (campaigners from patient and disability organisations in most European countries). New members from North America, Europe and the Pacific Rim are continually joining, attracted by the network's services. By April 2007, the membership had grown in number from the original 26 to about 4,000 individuals, all in different patient, consumer, social, disability, and carer groups from around the world.

HSCNetwork International has been set up for individuals (not for their organisations). It fulfils similar sorts of functions for campaigners in health and social care as networks that operate exclusively for doctors and lawyers. The network is open to people who work as campaigners in the fields of health or disability (and may be full-time or part-time, salaried or voluntary).

The network is totally independent. It receives no financing from the healthcare or pharmaceutical industries, or from governments or non-governmental organisations. The network is primarily financed through sales of HSCNews International to people who do not qualify for membership of HSCNetwork International, but who are interested in reading about health and social campaigners. Membership of the network is free to accredited health, consumer, social and disability groups who consent to the single condition of completing one short email survey per year. Results from each survey (which are on subjects important to most health and social campaigning groups) are published one month later in HSCNews. HSCNetwork International is administered by PatientView.

HSCNetwork International has no political or campaigning agenda of its own, and exists only to provide its members with services. Most members are inevitably busy people. Members therefore do not need to give up any of their time to the network. Members may choose to use, participate in or ignore the network's services, as they wish. All members will be anonymous (unless they choose otherwise).

• Health and Social Campaigners' News International is an eight-issues-per-year emailed briefing for members of the Network. HSCNews reports on the latest significant developments within the world of health and social campaigning. The publication concentrates on what campaigners are thinking, what they are doing, and what they plan to do.

• HSCNews Bulletin is a monthly bullet-pointed email that provides overview details about the latest activities of the Network's members, and gives information about health campaigners' new appointments, campaigns, events, funding, publications, research, and websites. The Bulletin is free to all members of the Health and Social Campaigners' Network.

• The SPEAKUP service is an informal means by which members can disseminate their opinions on subjects – to the membership and to the wider world. The service consists mainly of optional surveys distributed to Network members and some other campaigners. The surveys explore subjects of interest to campaigners, and the results published in HSCNews International.

If you are an accredited campaigner working in the areas of health or disability, and you wish to learn more about HSCNetwork, please email your request to info@patient-view.com

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'Coverage on HSCNews International'
The policy of PatientView (the publisher of Health and Social Campaigners' News International) is to disseminate information as widely as possible. We are delighted that the following organisations are referencing articles in HSCNews International.

• James Lind Alliance website
[Go to] Relevant Publications page
'Patients and researchers: tackling treatment uncertainty together'
Downloadable PDF of article from Health and Social Campaigners' News International , issue 24, December 2005, pages 16-28.

• Medical Imaging Magazine
February 2006
'Results of electronic medical records (EMR) patient survey from PatientView'
'The government loves them, and so do many facilities. But have you ever wondered how patients feel about electronic medical records (EMRs)? PatientView has published a global survey of patients' attitudes toward EMRs ...'

Survey results carried in: 'What patients and the public think of electronic medical records: a global survey', Health and Social Campaigners' News International , issue 23, November 2005, pages 5-37 and 84-page Appendix.

• Pharmac Consumer Advisory Committee, New Zealand
'Health industry sponsorship of consumer health organisations: a discussion paper'
May 2005
'A recent issue of the publication Health and Social Campaigners' News International recommended that health consumer groups adopt a strategic framework to reassure the public of an ethical approach if they accepted pharmaceutical industry funding. The recommendations included ...'

Refers to: 'Health campaigners, fundraising, and the growth of industry involvement', Health and Social Campaigners' News International , issue 6, April 2004, pages 6-62.

• British Nursing News Online
'Fears over electronic records threat to confidentiality'
Wednesday November 30th 2005
'A global poll of more than 200 patient organisations (including 50 in England) has revealed widespread concern that electronic medical records could put patient confidentiality at risk. The survey showed that people who have experienced problems with stigmatisation, such as HIV or mental health patients, are especially worried about facing greater discrimination should the security of their details be compromised. New electronic healthcare systems will allow doctors to access patient records from wherever they happen to be, and the Health and Social Campaigners' News International research found a general enthusiasm for the technology.'

Survey results carried in: 'What patients and the public think of electronic medical records: a global survey', Health and Social Campaigners' News International , issue 23, November 2005, pages 5-37 and Appendix.

• Evening Standard (London)
'In brief'
Wednesday November 30th 2005
'Patient fears over privacy. Health campaigners fear that electronic medical records could put confidentiality at risk. A global poll of more than 200 groups by Health and Social Campaigners' News International found that people who had experienced stigmatisation, such as those with disabilities or HIV, had the greatest concerns. Of almost 50 groups polled in England, 64 per cent said they were worried about patient privacy.'

• Guardian Unlimited
'Patients fear safety risk from electronic notes'
Wednesday November 30th 2005
'Health campaigners fear that the switch from paper to electronic patient records will put patient confidentiality at risk, researchers said today. The findings come in a poll of more than 200 organisations worldwide (including almost 50 in England) by Health and Social Campaigners' News International (HSCN), a global network of patient groups. The HSCN found that despite general enthusiasm about the electronic medical records technology, 64% of the groups in England said they were worried that patients would suffer a loss of confidentiality and privacy.'

• Irish Examiner
Caroline O'Doherty , 'Ireland has highest rate of super bug infections'
Tuesday June 7th 2005
'A new survey commissioned by the Irish Patients' Association (IPA) shows Ireland to be top of a deadly league with Europe's highest rate of infection by the MRSA hospital bug. Study author, Dr Alexandra Wyke, of the British research organisation Patient View, said: "The survey focused on hospital-acquired infections because that is where they are reported. But there is increasing evidence that MRSA is in the community. Ambulances are another area where it can be rife." 'http://archives.tcm.ie/irishexaminer/2005/06/07/story437714390.asp
This HSCNews International survey was also reported in the Evening Herald (June 6th 2005); the Irish Times , the Irish Independent , Irish Health.com , the Irish Sun (all June 7th 2005); and the Sunday Independent (June 12th 2005).
Survey results carried in: 'Hospital-acquired infections: global survey and interviews with Stephen McMahon, Simon Williams, and Lisa McGiffert', Health and Social Campaigners' News International , issue 18, May 2005, pages 5-60.

• New Zealand Herald
Sandra Coney, 'Wrong diagnosis in attack on Pharmac committee'
May 25th 2005
'Email news service Health and Social Campaigners News International reported that between 50 and 82 per cent of European Union patient groups received pharmaceutical company funding for projects. It recently surveyed funding of 125 groups worldwide and found that donations by pharmaceutical companies to non-government organisations were led by marketing rather than being motivated by philanthropic reasons.'
http://www.nzherald.co.nz/index.cfm?ObjectID=10127059
Survey results carried in: 'Funding of health campaigners: a global review of 125 groups', Health and Social Campaigners' News International , issue 15, February 2005, pages 6-27 and Appendix.

• Vereniging Samenwerkende Ouder- en Patiëntenorganisaties (VSOP) website
Press release on HSCNews / VSOP survey of patient groups children's medicines
'Patient organisations want better medicines for children--but are ignorant of the European Commission's proposals, finds a new EU-wide survey of patient organisations.'
http://www.vsop.nl/pdf/HSCsurveypress.pdf ]
Survey results carried in: 'Regulating childrens' medicines in Europe: campaigners express their opinions', HSCNews International , issue 16, March 2005, pages 5-28.

• Vereniging Samenwerkende Ouder- en Patiëntenorganisaties (VSOP) website
'Child medicine plan misses mark'
European Voice , 21st-27st April 2005, page 39.
A survey by HSCNews International on behalf of Netherlands-based group, Vereniging Samenwerkende Ouder- en Patiëntenorganisaties (VSOP), and Belgium-based think-tank, the European Forum for Good Clinical Practice (EFGCP), "revealed that 70% of health campaigning groups with an interest in child medicine were completely unaware of the European Commission's proposed Regulation on Medicinal Products for Paediatric Use."
http://www.vsop.nl/pdf/eurvoice.pdf
Survey results carried in: 'Regulating childrens' medicines in Europe: campaigners express their opinions', HSCNews International , issue 16, March 2005, pages 5-28.

• The United Kingdom Parliament, Select Committee on Health, Minutes of Evidence: Annex
'The Influence of the Pharmaceutical Industry on Patients' Organisations Within Europe'
November 11th 2004, printed March 22nd 2005.
'The number and size of health campaigning organisations across Europe is increasing every year. The public, as both citizens and patients, turn increasingly to these organisations to represent their interests and campaigners speak regularly at key meetings and conferences and are consulted routinely by governments. Global economic slowdown has led to a decline in government and public philanthropy and the faltering stock market has reduced the amount of money available from charitable foundations. The result is that a rapidly increasing proportion of the funding for health campaigning groups comes from the pharmaceutical industry. The industry hopes that an ever closer relationship with health-based charities will stimulate public demand for more of their products and put pressure on healthcare systems and governments to respond. Very few of the health campaigning organisations are completely transparent about the sources of their funding and how it is spent which leads to increasing suspicion of the extent of influence of the pharmaceutical industry. Where organisations do publicise the sources of their funding, pharmaceutical companies figure very prominently but the amounts given are not made public and, again, the extent of influence is difficult to estimate.'
http://www.parliament.the-stationery-office.co.uk/pa/cm200405/cmselect/cmhealth/42/4111103.htm
Taken from: 'Fundraising and the growth of industry involvement', Health and Social Campaigners' News , issue 6, April 2004, pages 6-62.

• Patients' Rights in Europe: A Citizens' Report
Summary of meeting organised by Active Citizenship Network at the European Parliament, Brussels, February 28th to March 1st 2005
March 2005
Written by Health and Social Campaigners' Network.
Commissioned by Oxford Vision 2020.
http://www.activecitizenship.net/projects/project_europe_chart.htm
and
http://www.oxfordvision2020.org/getMedia.asp?mb_GUID=0D904F5C-49B5-4D08-8CDB-5A2673766C8B.pd

• BBC MUNDO.com
'Los servicios de salud est?n "enfermos" '
February 9 2005
"Según una encuesta global sobre la calidad de los servicios de salud, los pacientes de países de todo el mundo están disconformes con la atención médica que reciben. En la encuesta participaron unas 300 organizaciones de todo el mundo. A esta conclusión general llegó el grupo independiente británico autor del sondeo, Health and Social Campaigners Network, luego de una encuesta en la que participaron unas 300 organizaciones de pacientes de todo el mundo".
Reference to 'Health campaigners reflect on 2004 and plan for 2005',
HSCNews, issue 13/14, January 2005, pages 5-48.
http://www.news.bbc.co.uk/hi/spanish/science/newsid_4251000/4251221.stm

• The La Revue Prescrire website
'Editorial. Firmes et associations de patients: des liasons dangereuses'
February 2005, no. 258, volume 25, pages 133-144
Reference to 'Health campaigners, fundraising, and the growth of industry involvement',
HSCNews, issue 6, April 2004, pages 7-62.
http://www.prescrire.org/editoriaux/EDI24660.pdf

• The Communication Initiative website
[Go to] Strategic Thinking
'Action plan on discriminatory practices in mental health in Europe'
January 9 2005
Reference to 'Mental Health Europe's action plan to fight discriminatory practices in healthcare', HSCNews International, issue 7, May 2004, pages 25-44.
[The CI is a partnership of development organisations, government agencies, universities, commercial foundations, and media organisations seeking to support advances in communications for positive International development.]
http://www.comminit.com/strategicthinking/st2005/thinking-950.html

• The International Headache Society website
Ethical Issues Arising from Commercial Sponsorship and from Relationships with the Pharmaceutical Industry
Report and recommendations of the Ethics Subcommittee of the International Headache Society; public consultation draft
September 2004; pages 5, 6 and 7.
References to 'In Focus: Active Citizenship Network and the European Charter of Patients' Rights', HSCNews, issue 3, January 2004, pages 37-49.
http://216.25.100.131/Ethics_Forum/PDFs/1_Sponsorship_Issues_Preamble.pdf

• The Spinal Injuries Association website
[Go to] External Affairs
Health and Social Campaigners' News International newsletter
September 2004
http://www.spinal.co.uk/latest_updates/default.ihtml?pid=49&step=2

• The LUCAS website
Catholic University of Leuven and Caritas Catholica Vlaanderen Interfaculty Centre for research, education and consultancy in care
[Go to] International Projects
Mental Health Europe's action plan to fight discriminatory practices in healthcare: article published by PatientView 2004
(Published in HSCNews International, issue 7, May 2004, pdf file, 28 pages)
http://www.kuleuven.ac.be/lucas/English%20version/International%20projects/MHE%20presentation.pdf

• Social Medicine Portal, the Albert Einstein College of Medicine
[Go to] Health Activism
Resources for Health Activism
"HSC Network International is a new virtual organization designed to support individuals who work as campaigners in health and social care."
http://www.socialmedicine.org/activism.html

• The Royal Society of Medicine website
[Go to] Latest News: June 2004
[Go to] The James Lind Alliance
"HSCNews article – "Confronting Important Uncertainties about the Effects of Treatments: the James Lind Alliance."
http://www.rsm.ac.uk/new/pdfs/hscnews.pdf

• The James Lind Library website
[Go to] Introducing the James Lind Alliance: June 2004
"An extended account [of the James Lind Alliance], published in Health and Social Campaigners' News, pdf file, 12 pages, 116kb). "
http://www.jameslindlibrary.org/pdf/effects_of_treatments.pdf

• Bundesverband Psychiatrie-Erfahrener e.V. (BPE) website
[Go to] Aktuelle Informationen: June 12 2004
"Bericht von Patient View über das Europäische Seminar über Diskriminierung von Psychiatriebetroffenen, Brüssel, April 23 2004 (leider nur in englischer Sprache - Bericht zum Projek in deutscher Sprache siehe hier). "
http://www.bpe-online.de/english/index-e-sik.htm

• Essential Drugs website
[Go to] E-Drug Archives: June 4 2004
"Health and Social Campaigners' News has just released a report on the funding of patient and advocacy groups worldwide by the pharmaceutical industry."
http://www.essentialdrugs.org/edrug/archive/200406/msg00019.php

• Taproot Foundation website
[Go to] In the News: May 26 2004
"The Taproot Foundation is a simple – but inspired – idea." HSCNews (UK).
http://www.taprootfoundation.org/about/HSCNews.pdf

• Leukemia Busters website
[Go to] Latest News: April 15 2004
"Leading patient groups' newsletter highlights Leukemia Busters campaign.
The latest edition of Health and Social Campaigners' News (issue 5) profiles the Leukaemia Busters' 'Save Our Clinical Trials Campaign'."
http://www.leukaemiabusters.org.uk/HSCNews5.pdf

• Active Citizenship Network website
[Go to] News:
[Go to] Active Citizenship Network and the European Charter of Patients' Right
"An article published by Patient View: Health and Social Campaigners' News, January 2004, issue 3."
http://www.activecitizenship.net/documenti/Patient%20View%20article.pdf

• European Men's Health Forum website
[Go to] News:
[Go to] World round-up of men's health:
January 2004 New round-up of men's health around Europe and the wider world
"The December 2003 issue of Health and Social Campaigners' News, a monthly electronic news service for and about patient, disability or health campaigners, is dedicated to men's health and includes a round up of men's health activities from around the world. The two articles: 'Men's health and the new campaigners' and 'The Men's Health Forum: a role model for campaigning groups?' "
http://www.emhf.org/

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What people are saying about HSCNews International

• "HSCNews is a breath of fresh air. It provides information and comment that is well-researched and balanced, to inform consumers on matters that concerns them in the health system. Each newsletter I receive has an article in it that is pertinent to areas of great concern here in Australia. It sets a new standard."
Christine Walker, Chief Executive Officer, Chronic Illness Alliance [Australia]

• "Good information! You are doing a real service to all of us."
Carmen Lee, executive director, Stamp out Stigma Programme [California, USA]

• "Thank you very much for collaborating with the distribution of the Charter, and for contacting us with so many important organisations. A great job of networking!"
Melody Ross, Project Manager, Active Citizenship Network-Cittadinanzattiva [Italy]

• "Some major European trends are:
--- • Governments struggling to keep healthcare costs within budget.
--- • Healthcare becoming more and more a European-wide and global issue.
--- • Patient advocacy groups transforming into expert/experience centres,
--- • and becoming main drivers of innovation.
HSCNews is the first global and European cross-disease newsletter covering significant developments in all these areas. With well-chosen subjects and intelligently written, HSCNews is top of the list, and highly recommendable. For health and social campaigners (as well as all parties co-operating with patients and patient organisations), connecting to such a valuable source of information is an absolute 'must'."
Adrian van Bellen, chair of Bloedlink Foundation (patient network for inherited cardiovascular diseases), board member of VSOP (the Dutch Genetic Alliance, an umbrella organisation supporting about 60 member groups), and founding triumvirate member of HEART EU [the Netherlands]

• "The coverage in HSCNews is fantastic, it really is. You have provided an in-depth analysis, whilst ensuring that all the jargon and processes are demystified - which is crucial, because our hardest task has been trying to ensure that our supporters can understand our concerns succinctly, and relate them to the EU Clinical Trials Directive."
Nigel Impey, Fundraising Manager, Leukaemia Busters - the Children's Leukaemia Research Charity [UK]

• "A most impressive publication. The article on DTC advertising will be extremely useful to our organisation, to help formulate and justify our position."
Marian Nicholson, Director, Herpes Viruses Association [UK]

• "In over thirty years of interactions with editors and publishers, I cannot recall ever having been treated more courteously and efficiently than I was by the staff at HSCNews."
Sir Iain Chalmers, co-ordinating editor, the James Lind Library, and former director, the UK Cochrane Centre [UK]

• "HSCNews has impressed me deeply. This is a large undertaking, but one that is a valuable service to the patient and research communities. Your issue on the current discussion about the 'EU Directive for Implementing Good Clinical Practice' was highly professional. It provided the best overview of the topic I have seen in print to-date. This seems to be a consistent approach you have toward developing a more informed and critical public - much needed in today's Europe."
Francis P. Crawley, Secretary-General and Ethics Officer, European Forum for Good Clinical Practice (EFGP) [Europe]

HSCNews International in 2007
HSCNews International in 2006 ...HSCNews International in 2005
HSCNews International in 2004 .. HSCNews International in 2003