12th May Lancaster, Workshop: Patient knowledge and involvement in healthcare

An event I am looking forward to: 

Royal Institute of Philosophy Workshop
Storey Institute, Lancaster
Monday 12th May

In recent years great efforts have been made to listen to “patient voices” in healthcare practice, research, and policy, but such initiatives have met with mixed success and many patients continue to feel that their view are overlooked (sometimes despite the best efforts of health care professionals). In this workshop we consider whether and why patient views matter. We ask what factors act to limit the possibilities for communication between patients and professionals, and consider how they might be overcome.

• 10-10.40 Chaos, conflict and cooperation. Havi Carel, Senior Lecturer in Philosophy, Bristol University
• 10.40-11.20 Silencing the sick. Ian J. Kidd, Addison Wheeler Fellow in Philosophy, Durham University
• 11.50-12.30 On trusting and being trusted. Garrath Williams, Senior Lecturer in Philosophy, Lancaster University
• 2-2.40 Patient advocacy challenged: The case of ME/CFS. Nancy Blake, Patient activist and PhD candidate, Lancaster University
• 2.40- 3.20 Medical paternalism and the right not to know. Emma Bullock, Postdoctoral Fellow “Concepts of Health”, King’s College London
• 3.50-4.30 Negotiating as individuals and groups. Rachel Cooper, Senior Lecturer in Philosophy, Lancaster University

Organisers: Ian J. Kidd and Rachel Cooper

Free and open to all, but numbers are limited. To reserve a place please email
Rachel Cooper - on r.v.cooper AT lancaster.ac.uk

[hifa2015] How can we stop ICANN decision that could profoundly damage global health?

Dear HIFA colleagues,

A few weeks ago I posted the Lancet article below, which highlights the threat of a commercial sale of the new top-level domain ".health".

The authors point out that ICANN (Internet Corporation for Assigned Names and Numbers), which controls all internet naming, could be about to make a decision to sell ".health" to the highest commercial bidder. The decision is imminent. I have indeed heard that an ICANN meeting that will include discussion of ".health" is being held over the *next few days*.

As the authors of the Lancet article point out, sale of ".health" to a commercial enterprise "could have a profound effect on health information access and quality for generations to come". This is something that should concern all of us, everywhere.

ICANN hosts a wiki which apparently can only be edited by them and which briefly describes the issue in rather difficult-to-follow language, without actually explaining the nature of the objections that have been raised by leading health organisations, including WHO, and by national governments:
http://icannwiki.com/index.php/.health

These objections may be found elsewhere by googling. Essentially, there is a *great* deal of concern among health agencies worldwide, and a small handful of governments, of the public health consequences of commercialising ".health". In particular, there will be little if any assurance that the content of websites carrying the ".health" domain name will contain reliable health information. There is a serious risk that misinformation and/or commercially biased information could be propagated using the ".health" suffix. It is likely that many citizens worldwide will see the ".health" suffix as an indication that the information is primarily intended for their health, whereas the reality would be that much of the information would inevitably be wholly unreliable, and driven by commercial (or even ideological) motives.

I was especially concerned to read the latest news on this wiki, which read as follows: "The IO [Independent Objector - see below] lost its objection to Afilias' applicant for .health in a ICC determination by 3 panelists made on 6 November 2013. The determination was the first Limited Public Interest Objection to be decided, as well as the first objection filed by the IO to be decided. [19]

I am not entirely clear how the proceedings work, but the wiki tells us that "[ICANN's Independent Objector] is an appointed authority on international law whose role is to object to strings on the grounds of Community harm and Limited Public Interest were detailed in the applicant guidebook. His objections are official objections and are funded by ICANN, though his office is otherwise independent. Reasons for the specific case against .health were not initially given, but, in the case of Limited Public Interest, "the applied-for gTLD string must be contrary to generally accepted legal norms of morality and public order that are recognized under fundamental principles of international law. The expert panel appointed by the ICC will base its decision on the existence of such a contradiction." The applied for string must threaten an incitement to violence of lawless action, discrimination, child pornography, or "be contrary to specific principles of international law as reflected in relevant international instruments of law.""

This reference to "violence of lawless action, discrimination, child pornography..." is bizarre and I cannot claim to understand how this is relevant. What is at issue here is the availability of reliable versus unreliable healthcare information. I hope that others on HIFA may be able to enlighten us further.

Regrettably, there has been an almost total absence of advocacy and awareness-raising about the issue, apart from The Lancet article. Other than the authors of the Lancet article, there is no advocacy leadership of which I am aware. This is the kind of issue that needs a prominent global health leader to speak out. I do not know whether Margaret Chan, Director-General of WHO, is free to speak out on this, but I feel that we need a strong statement from someone at the highest level.

In the meantime, what can we (HIFA members) do to stop ICANN making - or at least deferring - a decision that could profoundly damage global health?

Best wishes,
Neil
HIFA profile: Neil Pakenham-Walsh is the coordinator of the HIFA2015 campaign and co-director of the Global Healthcare Information Network. ...
[ As mentioned above Neil also posted the Lancet article - I have just copied the link below ]

Below is the citation and extracts of a new article in The Lancet. The full text is freely available here:
http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(13)62215-1/fulltext

Ensuring the future of health information online
Tim K Mackey, Bryan A Liang, Amir Attaran, Jillian C Kohler
The Lancet, Volume 382, Issue 9902, Page 1404, 26 October 2013
doi:10.1016/S0140-6736(13)62215-1Cite or Link Using DOI

66,000+1 'cultural sensitivity, political correctness', or +0 real action ?

HUMANistic -------- RIGHTS

context: eradicating female genital mutilation

INTERPERSONAL : SCIENCES

SOCIOLOGY : POLITICAL

individual

psychological effects ...	physical effects ...
socialisation into ...? intergenerational practices expectations social change education norms need for 'cultural sensitivity' need for ACTION

group - population

Additional links:

C4 TV - The Cruel Cut: A passionate, exuberant exploration of the complex world of Female Genital Mutilation

BBC News: Health professionals must screen for genital mutilation

Image: Daughters of Eve

The Guardian: Report calls for female genital mutilation to be treated as child abuse

Symposium: Zero Tolerance: Eradicating Female Genital Mutilation
A Public Policy Exchange Symposium 13 November 2013 - Public Policy Exchange

Overview

It has been estimated that over 20,000 girls under the age of 15 are at risk of FGM in the UK each year, and that 66,000 women in the UK are living with the consequences of FGM. More than 1,700 victims were referred to specialist clinics in the last two years, with at least 70 women and girls as young as 7 seeking treatment every month. FGM has been a criminal offence in Britain since 1985; however, there has not been a single prosecution to date. Furthermore, since 2003, it has been illegal to aid or participate in arranging FGM to be performed on another person inside or outside Britain.

Call for papers: the science and practice of people-centred health systems

Cover: Health Policy and Planning

The journal Health Policy and Planning and the organizers of the Third Global Symposium on Health Systems Research [ next in 2014 ] are pleased to issue a call for papers for a special supplement on the theme of "The science and practice of people-centred health systems". The theme for the call is also the theme of the Symposium. Full text of the call.

People-centred health systems are founded on pro-people philosophies of social justice and equity, recognize the role of social exclusion and inequities as determinants of poor health, and can also actively work to address them. They consider the health needs and preferences of individuals, families and communities, and create the channels through which these can be articulated and realized. They also recognize and actively progress people’s rights to participate in and determine how health systems are organized, resources are allocated, and services are delivered.

The idea of people-centred health systems also encompasses the rights and needs of people who work in and for the health system in various roles - as carers, health workers, advocates, administrators, planners and researchers. It also recognizes that important decisions that determine health system performance at all levels are made by specific people (individuals and groups in the public and private sectors) - highlighting the importance of collecttive duties toward the advancement of health, and of identifying responsibility and ensuring accountability for health system outcomes. 

Finally, the concept of people-centred health systems also acknowledges that health systems operate in broader social, political and economic contexts that are of human creation, and the need to respond to all factors that affect health rather than focusing only on biomedically driven solutions.

Full manuscripts on the theme of “the science and practice of people centred health systems” should be submitted to Health Policy and Planning by 18 November 2013 through the submission link on the journal website (http://heapol.oxfordjournals.org/).  Original research articles as well as review papers are invited. Submissions that have a first-author who is a resident in a low and middle-income country are particularly encouraged.  Accepted papers will be published as a special journal supplement prior to the Symposium, which will take place in Cape Town, South Africa, 30 September - 3 October, 2014. 

The full text of the call contains suggested topics, details of the selection process and author information.

For further queries, contact Kabir Sheikh (kabir.sheikh AT phfi.org) or Michael Kent Ranson (ransonm AT who.int).

c/o HIFA2015

International Women’s Day 2013 (three items)

I received three emails concerning IWD which I have reduced and edited here:


KIVA - every day we at Kiva hear stuff like this:

• 70% of the world's poorest people are women.
• Two-thirds of illiterate adults are women.
• HIV is still the leading cause of illness for women in many places.

Kiva loans help thousands of powerful, inspiring women start businesses, educate their children, and realize their dreams.
You can tip the balance!

Want to make a difference? Send a Free Trial to your friends and family so they can empower a woman on Kiva too. Just send them to kiva.org/women

<>

Miss Representation.org - Cause and Effect: Why We Need to Tell Herstory

<> 

Join Wiley in celebrating International Women’s Day on March 8^th 2013! This free compendium of thought-provoking research from Wiley's leading publications celebrates women’s accomplishments, past and present, and examines the barriers that continue to obstruct equality of the sexes.

We hope that you enjoy reading this research and wish you a happy International Women’s Day!

Read FREE Research on Gender Equality

(Extreme) sensitivity to initial conditions: Employment - Sickness

There was an item today on BBC Radio 4's You and Yours on the government's Fit for Work tests.

The new fitness for work assessments have been under review. The discussion featured Professor Malcolm Harrington and his final report on the Work Capability Assessment Review and highlighted the humanistic and mechanistic dimensions of this very complex issue (see also the back-to-work programme?). Points raised include:

• the impact of certain medications and treatments on an individual's ability to partake in an interview;
• the meaningfulness of an appeals process that once won, then sees subsequent recalls;
• 4/10 appeals are won;
• the need to balance decision making and the computer based process, with the former utilising documentary evidence;
• people with mental health and cognitive problems may be less able to advocate for themselves.

What troubled me is (the admittedly) single example were a client attending a review was advised not to bring documentary evidence. What this does is to effectively switch OFF three of four care domains: SOCIAL, INTERPERSONAL and (remarkably) the SCIENTIFIC.

What are the purposes to which clinical assessments, tests, reviews can be put? Why do clinicians and the social care team create records?

Relying primarily upon, or being driven by a computer based algorithm makes this a POLITICAL 'exercise'.

As such it will be seen SPIRITUALLY as cold and uncaring.

POLITICAL neglect reinforcing similar neglect and disinterest in the CITIZENRY.

Second Latin American and Caribbean Global Health Conference “Transcending borders for health equity” Santiago, Chile January 9-11, 2013

From PAHO (Ana Luisa!)

Santiago, Chile January 9-11, 2013 - http://www.congresosaludglobal.uchile.cl/

Abstracts should be submitted through the Conference website and received before November 26, 2012 at 12:00pm (Chilean time)
http://bit.ly/Rmp5Ra

Conveners:

The Latin American Alliance for Global Health (ALASAG)
The School of Public Health “Dr. Salvador Allende G.” of the University of Chile
The Latin American Association of Schools of Public Health (ALAESP)

The objective is to share knowledge and strengthen partnerships for education, research and advocacy in Global Health in Latin America and The Caribbean. The conference also seeks to contribute a Latin American outlook to the most pressing issues in the global health and development agenda, such as the impact of the economic crisis, social movements and conflicts and the Millennium Development Goals (MDGs).

The Conference is intended as a forum for discussion and proposal for progress toward achieving greater equity and social justice within and among all countries.

The program is organized under the following thematic areas:

• Migration, violence and population displacements
• Education and Human Resource Development in Global Health
• Health law and human rights
• Nutrition and food security
• Challenges of social movements and social media networks
• Development cooperation and global health, peace, and diplomacy
• Universal coverage and social protection
• Research, innovation and implementation in global health
• Working towards the post Millennium Development Sustainable Goals
• The economic crisis and its impact on public health
• Climate Change, Challenges and Opportunities for Global Health

Speakers

The following speakers have confirmed their attendance
- Sr. Ricardo Lagos Escobar, former President of Chile and Commissioner of the WHO Social Determinants of Health Commission,
- Dr. Jaime Mañalich, Minister of Health, Chile,
- Dr. Ginés Gonzalez, President Emeritus ISalud University, Buenos Aires, Argentina Ambassador to Chile and ex- Minister of Health, Argentina,
- A representative of Dr. Mirta Roses, Regional Director of the Pan American Health Organization (PAHO / WHO),
- Sir Michael Marmot, UCL International Institute for Society and Health;
- Prof. Ronald Labonte, University of Ottawa,
- Dr. Paulo Buss, Fiocruz Foundation,
- Dr. Anvar Velji, Consortium of Universities for Global Health (GHEC-CUGH),
- Prof. Oscar Cabrera, O'Neill Institute for National and Global Health Law at Georgetown University,
- Dr. Pierre Beukens, Tulane University School of Public Health and Tropical Medicine and CUGH,
- Dr. Haile Debas, University of California San Francisco, and CUGH,
- Dr. Wolfgang Munar-Angulo, Gates Foundation,
- Dr. Roger Glass, Fogarty International Center,
- Dr. Jeannette Vega, Rockefeller Foundation,
- Dr. Ilona Kickbusch, The Graduate Institute, Switzerland.

Partners

Many individuals and organizations in Chile, Latin America, the Caribbean, North America and Europe have contributed significant resources to ensure that this second Conference is as successful as the first one. The School of Public Health at the University of Chile, as host of the event, has generously contributed its own resources and from other Chilean funding sources to ensure the success of the Congress. The members of ALASAG in 10 LAC nations are working to promote the conference in their own countries. At the time of this announcement, the following organizations have agreed to partner with ALASAG and the University of Chile to co-sponsor the conference: the Ministry of Health of the Chilean Government, the Pan American Health Organization, Consortium of Universities for Global Health, Columbia University Global Center in Latin America (Santiago), the Fogarty International Center, the O´Neill Institute for National and Global Health Law, Georgetown University, Canadian Society for International Health, Chilean Occupational Health Safety Association (ACHS), Aguas Andinas Corporation, Clínica Las Condes and Pfizer Chile, S.A.

Giorgio Solimano Cantuarias President 2nd Latinamerican and Carribean Global Health Conference
School of Public Health Universidad de Chile
V. Nelly Salgado de Snyder Technical Secretariat Alianza Latinoamericana de Salud Global (ALASAG)
National Institute of Public Health Cuernavaca, México

Spanish:

2º CONGRESO LATINOAMERICANO Y DEL CARIBE SOBRE SALUD GLOBAL
Transcendiendo fronteras para la equidad en salud
Santiago de Chile 9-11 de enero, 2013

Instituciones convocantes:

La Alianza Latinoamericana de Salud Global (ALASAG),

La Escuela de Salud Pública “Dr. Salvador Allende G.” de la Universidad de Chile

Website: http://www.congresosaludglobal.uchile.cl/

Objetivos

Compartir conocimientos y fortalecer alianzas para la educación, investigación y abogacía a favor de la Salud Global en la Región de América Latina y El Caribe.
Aportar la mirada latinoamericana a los temas más candentes de la agenda mundial sobre salud y desarrollo, tales como el impacto de la crisis económica, los movimientos y conflictos sociales y los Objetivos de Desarrollo del Milenio (ODM).
Establecer un Foro de discusión y propuesta para avanzar hacia el logro de mayores niveles de equidad y justicia social dentro y entre todos los países del mundo.

Resúmenes deberan ser enviados a través de la página web del Congreso hasta el día 26 DE NOVIEMBRE A LAS 12:00h

Ejes de trabajo:

- Migración, violencia y desplazamientos poblacionales
- Colaboración internacional para el manejo integral de desastres y epidemias
- Desafíos de los movimientos y las redes sociales
- Mecanismos de cooperación y diplomacia para la salud global
- Cobertura universal y protección social
- Investigación, innovación e implementación en salud global
- Hacia los nuevos Objetivos de Desarrollo del Milenio
- Crisis económica y su impacto en la salud pública
- Cambio climático, desafíos y oportunidades para la Salud Global
- Cooperación para el desarrollo y diplomacia en Salud Global

Giorgio Solimano Cantuarias -Presidente 2º Congreso Latinoamericano y del Caribe sobre Salud Global
Escuela de Salud Pública Universidad de Chile
V. Nelly Salgado de Snyder - Secretaría Técnica Alianza Latinoamericana de Salud Global (ALASAG)
Instituto Nacional de Salud Pública - Cuernavaca, México

Please visit the GANM webpage at: http://knowledge-gateway.org/ganm/

My source: GANM c/o Patricia Abbott.