Global Alliance for Self Management Support

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2010-10-21T14:05:00.001+02:00

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2010-10-21T14:04:00.001+02:00

esta es una prueba de energyzer

2009-07-16T03:12:00.004+02:00

The empowerment of lay citizens as equal partners in the creation of 21st century healthcare

2008-08-31T17:03:00.010+02:00

20th century healthcare is breaking-down in the face of new 21st century challenges. An emerging global chronic conditions pandemic is causing a seismic shift in demand, from acute to long-term care, resulting from aging populations and modern life-styles.

Socio-economic transformations of the globalised economy cannot sustain present models, never mind extend them to meet the growing Tsunami of new demand. The efficacy and sustainability of 21st century healthcare will require the development of new cultural and technological approaches to mobilizing and deploying resources, both human and material.

In this context, the empowerment of lay citizens as equal partners in the transformation of healthcare, is seen by a growing number of professionals and researchers as an indispensible key to the creation of 21st century healthcare.

One remarkable pioneer, researcher and advocate for patient-driven healthcare was the late Tom Ferguson MD, a physician from the USA who dedicated his last years to the production of a visionary White Paper: "e-patients - how they can help us heal health care". (see his photo above)

Before he could finish his work, Tom Ferguson died unexpectedly in April 2006 aged 62, after surviving 15 years with multiple myeloma (a type of cancer). Tom had gathered together an advisory body of colleagues and friends that he called The e-Patients Working Group, who "undertook the completion of his White Paper as an expression of their love for Tom and respect for his vision". The paper was published in 2007, with the support of a Quality Health Care Grant from the Robert Wood Johnson Foundation.

Tom Ferguson coined the term "e-patients" to describe individuals who are equipped, enabled, empowered and engaged in their health and health care decisions. He envisioned health care as an equal partnership between e-patients and the health professionals and systems that support them.

Central to Tom's vision is the use of the Internet to enable "a living breathing interactive world, in which growing numbers of our fellow-citizens -both patients and professionals- interact in highly personal and fully human ways" to transform professional medical culture and education, so that "clinicians' roles in 21st century healthcare will increasingly be to support their patients' own initiatives, to encourage patients to practice self-managed care, to help patients acquire the information, skills, tools, and support they need, and to serve as advisors along the way."

As the sub-title of his White Paper suggests, Tom advocates that the assertive baby-boom generation of Internet-savvy patients and family caregivers be recognized and supported "as a valuable new type of renewable resource, managing much of their own care, providing care for others, helping professionals improve the quality of their services, and participating in entirely new kinds of clinician-patient collaborations, patient-initiated research, and self-managed care."

In chapter 2 of the White Paper, the following preliminary conclusions are proposed as principles of patient-driven healthcare (which are further elaborated in the original paper):

e-Patients have become valuable healthcare resources and providers should recognize them as such.
The art of "empowering" patients is trickier than we had thought.
We have underestimated patients' ability to provide useful online resources.
We have overestimated the hazards of imperfect online health information.
Whenever possible, healthcare should take place on the patient's "turf."
Clinicians can no longer go it alone.
The most effective way to improve healthcare is to make it more collaborative.

Tom Ferguson defined his White Paper role in terms of "a host at a dinner party, inviting a remarkable cast of characters to share their insights and describe their visions". His "guests" in turn appreciated the opportunities Tom afforded for them to "exchange exciting ideas with each other, and offer suggestions and encouragement for obstacles they faced in their own work".

Tom Ferguson epitomized an "open-source" collaborative approach to the development of 21st century healthcare. His example and spirit are rightly cherished by his many colleagues -both patients and professionals- because, in Tom's words, they "can help us find sustainable solutions to many of the seemingly intractable problems that now plague all modern healthcare systems."

We therefore would like to offer the g@sms Internet platform to build upon the legacy of Tom Ferguson, to extend its reach around the world, by inviting connection and collaboration with like minded colleagues - professionals, patients and caregivers. Please send a contact email to: raymond (dot) aitken (at) globalalliancesms (dot) org

Note: all text in italic has been quoted from the White Paper.

"e-patients - how they can help us heal health care" - a White Paper (pdf) by Tom Ferguson MD, published in 2007 - link to the wiki version

e-patients. net - a multi-author blog by members of the e-Patients Scholars Working Group, which continues the conversations they started with Tom Ferguson MD

doctom.com - the original website of Tom Ferguson MD

An obituary for Tom Ferguson on Medscape

Major event: International Congress on Chronic Disease Self-management - 26th to 28th November 2008 - Melbourne, Australia

2008-07-07T17:01:00.004+02:00

The 2008 International Congress on Chronic Disease Self-Management will be held in Melbourne on 26-29 November.

With chronic disease now contributing up to 80% of the burden of disease and the majority of affected individuals caring for themselves, innovations in the management practices of people with chronic diseases are a national and international imperative.

Conference themes will centre around the greatest individual and public health opportunities to impact on chronic disease, bringing new insights and innovations to the discipline and generating the momentum to take the field forward.

Website: www.cdsm2008.com

Call for Abstract submissions close: 28th July 2008

Early Bird registration close: 15th September 2008

Contact: Melbourne Conference Management
Union House, The University of Melbourne, Parkville, VIC 3010
Tel: +61 3 8344 3682
Email: cdsm2008@union.unimelb.edu.au

More Information

The conference is hosted by the Centre for Rheumatic Diseases, Melbourne University, and will take place at the Hilton on the Park, Melbourne.

PROGRAM

The conference will consist of one day of workshops followed by two days of presentations. These will include those showcasing innovations in Chronic Disease Self-management in a variety of contexts (disease groups and modes of intervention), proffered papers, and presentations from both Australian and international leaders in the field.

CONFERENCE THEMES:

The workplace – an untapped opportunity for Chronic Disease Self-management Innovations in Chronic Disease Self-management program content and delivery

Optimising the role and impact of primary care

The needs of indigenous people and those from culturally and linguistically diverse backgrounds

Chronic Disease Self-management for young people

Health Literacy: the foundation of self-care and self-management support

Introduction of innovation - making Chronic Disease Self-management sustainable

Useful links

Congress website

Call for abstracts

Centre for Rheumatic Diseases, Melbourne University

ICT enabled Self-Management Support for Chronic Illness prevention and care in developing countries

2008-06-01T16:06:00.001+02:00

A World Bank report warns that poor countries are catching up with wealthier nations in terms of cancer, diabetes, obesity, and heart disease, and that by 2015, these chronic illnesses will be the leading cause of death in developing countries. The report calls for actions to slow down the trend, and to prepare for subsequent heavy demand on health care budgets. (1)

These figures do not include communicable diseases that have a similar health system and socio-economic development impact, such as HIV/AIDS, which can also benefit from innovative Chronic care Policy and interventions recommended by the World Health Organisation (WHO). (2)

Chronic conditions represent 70% of costs for health systems

the longer duration of chronic disease makes the financial costs heavier than in the case of acute illnesses, which can cause households to slip below the poverty line

low- and middle-income countries also need to adapt their health systems to cope with the growing numbers of elderly people who will require long-term care and request expensive treatment. In Indonesia, for example, private healthcare spending is projected to more than double by 2020, compared to 2005, as its elderly population grows in size, and needs treatment for chronic diseases.

Self-Management Support as a cost effective intervention

70-80% of people with chronic illnesses can self-manage their condition, so as to maintain their socio-economic activities and quality of life, if they are provided with appropriate education and supportive interventions by health professionals.

to ensure successful implementation, it is necessary to educate primary healthcare professionals in Self-Management Support (SMS), ("from expert health professional to expert patient"), so that these professionals can then provide evidence-based and quality assured SMS interventions to their patients and family caregivers.

Enabling technologies (ICT) can provide greater outreach, cost containment and effective service delivery

the use of ICT (telecommunications + IT + Internet) can extend outreach, reduce costs and improve standards of quality, efficiency and effectiveness, for Chronic illness prevention and care through Self-Management Support interventions to middle- and low-income countries, by enabling international exchange of best practice, especially through the application of methodologies such as the Virtual Breakthrough Series, developed by the Institute for Healthcare Improvement (USA).

this represents a significant business development opportunity in emerging markets for private sector ICT companies, including mobile telephone operators and handset manufactures, Internet Service Providers (ISP) and Internet Application Service Providers (ASP).

The 2nd Annual Chronic Care Congress, from June 1-3, 2008 in Alexandria, VA.

On June 3, at the 2nd Annual Chronic Care Congress, Dr Manuel Serrano , GA-SMS Coordinator, will present how ICT applications can be used to enable prevention and self-management for Chronic illnesses.

The GA-SMS strategy is to improve health service performance at the primary care level, in complement to existing top-down approaches, by empowering front-line health care providers, patients and family caregivers, with ICT enabled education and tools for improving self-management support.

These innovative and evidence-based tools have been developed by world renowned institutions; such as: the Institute for Healthcare Improvement, the MacColl Institute for Healthcare Innovation and Stanford University).

Outreach into local communities will be channeled through existing ubiquitous ICT platforms, which in the case of many developing countries, is predominantly the mobile phone. We therefore envisage partnerships with national mobile telecommunications operators, as well as handset manufacturers and other ICT industry stakeholders.

Dr. Serrano is also the President of the Education, Health, and Society Foundation (EHSF) in Spain, as well as Director of the Expert Patient Programme in Spain. The GA-SMS advisory board already comprises more than 25 experts from 15 countries in the field of Patient Empowerment and Self Management Support.

GA-SMS is already in the process of building a collaborative Intranet platform for global multi-lingual reach, using Web 2.0 services like Google Apps, (which includes the simple to use web applications used to create this public site).

Join us

Anyone interested in participating in this innovative international endeavor, is most welcome to submit their application using the on-line form - thank you.

More information

Presentation at the 2nd Annual Chronic Care Congress 2008, by Dr Manuel Serrano

(1) World Bank report: Public Policy and the Challenge of Chronic Non-communicable Diseases

(2) Innovative Care for Chronic Conditions: Building Blocks for Action - report by the World Health Organisation

Virtual Breakthrough Series (VBTS)

Institute for Healthcare Improvement (IHI)

MacColl Institute for Healthcare Innovation

New Health Partnerships

The Chronic Disease Self Management Programme (CDSMP) - developed by Stanford University School of Medicine (USA)

Education, Health and Society Foundation (EHSF), Spain

Expert Patient Programme (EPP-Spain)

Global Alliance for Self-Management Support (on the EPP-Spain website)

Health Foundation - (UK)

Google Apps

The photgraph at the top of this post is from a web page of the UN sponsored ICT, Science and Technology Division (ISTD), a section of the Economic Commission for Africa (ECA).