Dear HIFA2015 members,

We are delighted to announce the first draft of the New York Law
School/HIFA2015 White Paper: Access to Health Information Under
International Human Rights Law. A brief Summary is presented below
and the full paper (18 pages) is available on the HIFA2015 website at:
http://www.hifa2015.org/wp-content/uploads/2009/09/access-to-health-information-under-international-human-rights-law-draft-v1-08sep09.pdf

This draft was researched and prepared largely by HIFA2015 members
and NYLS law students HyoSung Bidol-Lee, Andrea Casillas, Ronete
Hikry, Juliana Moran, and Michael Murphy, under supervision from
Profs Molly Land and Richard Marsico, and with inputs from Neil
Pakenham-Walsh.

The draft is formatted in the style of a NYLS 'White Paper' and we
would welcome your comments and suggestions on the content, analysis
and approach.

As you read the paper, we would like to invite you to consider the
following questions:

1. How might this paper be improved?
2. Are you aware of any examples of what countries have done to meet
their obligations to provide information to healthcare providers?
3. How might this paper be used, or adapted, for example to raise
maximum awareness about health information and human rights?
4. What action can be taken now to advocate for countries to
recognise and act on their obligations in relation to health
information and human rights?

We would like to take this opportunity to thank the many other
HIFA2015 members who have contributed their experience, expertise and
thoughts on this subject, including Olayinka O. Ayankogbe, Ibrahima
Bob, Ann Burgess, Peter Byass, Edward Cherlin, Eric Friedman,
Mulugeta Betre Gebremariam, Laura Janneck, George Kent, Naira Roland
Matevosyan-Schwarzenberg, Lutfor Rahman, Claudio Schuftan, Toumzghi
Sengal, Chris Zielinski and others. A summary of the original
HIFA2015 discussion thread on this topic is available on the Project
website: http://www.hifa2015.org/hifa2015-and-human-rights/

With best wishes,

Neil Pakenham-Walsh, HIFA2015
and
Professor Molly Land, New York Law School

On behalf of the New York Law School/HIFA2015 Human Rights and Health
Information Project
http://www.hifa2015.org/hifa2015-and-human-rights/

HIFA2015 profile: Neil Pakenham-Walsh is the coordinator of the
HIFA2015 campaign and co-director of the Global Healthcare
Information Network. He started his career as a hospital doctor in
the UK, and has clinical experience in rural Ecuador and Peru. For
the last 18 years he has
been committed to improving the availability of healthcare
information for health workers in developing countries. He has worked
with the World Health Organization, the Wellcome Trust, and INASP
(International Network for the Availability of Scientific
Publications). neil.pakenham-walsh AT ghi-net.org

HIFA2015 profile: Molly Land is affiliated with the Institute for
Information Law and Policy at New York Law School, where she works on
issues at the
intersection of human rights and intellectual property. molly.land AT nyls.edu


SUMMARY: Access to Health Information Under International Human
Rights Law (draft)

'The Institute for Information Law and Policy and the Justice Action
Center at New York Law School (NYLS) are collaborating with
Healthcare Information for All by 2015 (HIFA2015) (www.hifa2015.org),
a project administered by the Global Healthcare Information Network,
a UK-based non-profit organisation, to explore the use of a human
rights model to approach the problem of access to health information.
In the fall of 2008 and spring of 2009, NYLS students surveyed
international legal authority in order to evaluate the status of
health information under human rights law and prepared the following
briefing paper. The purpose of this briefing paper is to discuss
whether and, if so, to what extent states are obligated under
international treaty law to provide health education and ensure that
healthcare providers (both lay and professional) have access to
health information.

'The paper concludes that health information (as defined below) is an
essential component of many identified and established human rights.
Health information plays an important role in securing the rights to
health and education, the rights of women and children, and the right
to exchange and impart information. These rights are protected under
the International Covenant on Economic, Social and Cultural Rights
(ICESCR), the International Covenant on Civil and Political Rights
(ICCPR), and other international and regional human rights treaties.
States party to these treaties must provide health information and
guarantee access to such information in order to achieve compliance
with these enumerated rights. Health information fosters meaningful
social and political participation and ensures that individuals
achieve and enjoy the rights afforded to them by international human
rights law.

'The right to health information carries with it specific state
obligations. States must not only refrain from actions that would
interfere with access to health information, but also affirmatively
take steps to provide individuals with health information. States
must ensure that heath information is accessible and available to the
most vulnerable segments of society and on a non-discriminatory
basis. The right to health also requires states to affirmatively
provide health information both to individuals and to medical
professionals. States are also obligated to provide women with
accurate information so as to ensure that children and adolescents
have appropriate care. They are obligated to ensure that health
workers receive adequate training and adequate access to relevant and
medically accurate health information and to regulate interference by
third parties.'

posted 09 September 2009 by Neil Pakenham-Walsh from email