HAVE YOUR SAY ON E-HEALTH

The Australian Government has committed $466.7 million (2010-11 Budget) to establish key components of the personally controlled electronic health record (PCEHR) system. The system is a key element of the Australian Government's health reform agenda to provide better health care for all Australians.

From July 2011, Australians who choose to participate can register for a personally controlled e-health record. They can also allow their authorised healthcare providers to securely access their important health information.

A Draft concept of Operations: Relating to the introduction of a PCEHR system document is now available online. Feedback on the document is encouraged from all members of the community - consumers, carers, healthcare professionals, and the information and communication technology (ICT) industry.

The document explains how the PCEHR might look what informaiton it might contain, how it might function, security and privacy settings, and how it will interface with other clinical systems.

Your feedback is an important part of the ocnsultaiton process to help underpin the Government's commitment to ensure all Australians, who choose to, can register for a PCEHR.

Submissions can be made at www.yourhealth.gov.au until 31 May 2011.

[This information is taken from: The Courier Mail, 16 April 2011, p98] 

Melanoma Patients Australia is proud to be a part of the Independentl Cancer Advisory Boards Initiative (M-ICAB). Details below.

http://www.m-icab.org/  

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The European Cancer Patient Coalition (ECPC) http://www.ecpc-online.org/ has decided to launch a series of Independent Cancer Advisory Boards as patient-led,independent advisory panels that would be contributing to identifying innovative cancer solutions – especially for underserved cancers and under-represented cancer type populations.

This type of organizationalstructure (inspired on the successful experience of the HIV/AIDS Community Advisory Boards) will offer a platform for all stakeholders to experience a newmodel of connectivity that identifies the perspective of cancer patients at thecore.  Therefore, the inclusion of ICABs and respect for targeted cancer communities through on-going dialogue with all stakeholders has been identified as strategic imperative on which we need to take action.  

The primary rationale and demand by the cancerpatient community for the setting up of ICAB is that they have a right to develop innovative approaches and solutions for specific cancer issues that would not be achievable by single actors alone, based on a true and meaningful partnership with researcher/clinicians, the pharmaceutical/diagnostic companies, the EU and regulatory bodies.

CAB members will include cancer patients and patient advocates.  Some of the ICAB members are trial participants. Manyhave considerable scientific backgrounds or relevant professional training, while others have no medical or scientific background, but the educatedexperience of living with the disease. All have a strong motivation to shiftthe discourse away from simply “reducing the burden of cancer care” to planningfor better cancer survivorship, better outcome, access and care. Theimportance of building and sustaining an ongoing dialogue with stakeholders andtraining ICAB members on how to proactively participate in the definition andimplementation of new solutions in cancercare is critical to getting the mos tout of a ICAB's efforts.

The first Independent Cancer Advisory Board was launched on March 22nd 2011 for Melanoma. This is an undeserved cancer where targeted therapies for advanced disease are at a turning point but still quiteexperimental, trial designs and chosen endpoints are perceived as not always considering the patients' perspective, industry's and investigators' interests seem to be quite fragmented, access to treatment information is limited and where patient advocacy in Europe is still at its infancy.

Melanoma ICAB

Mission

To provide meaningful and broad community input with priority for cancer patients into the scientific efforts, operations, and activities, overcoming any perceived conflict of interest.

Objectives

1.                 To offer patients a strong Melanoma patient community identity that creates cohesion and empowers patients tobecome involved in all decision making concerning Melanoma at a European but also larger international level.

2.                 To offer industry, researchers and clinicians a unique way of relating to each other andofcommunicating with Melanoma patients by participating in events where the agenda and topics are established from the perspective of patients living with Melanoma.

3.                 To act in complementary way to patient communication initiatives taken by the industry and by researchers andclinicians working in Melanoma.

4.                 To develop stronger partnership between European and non-European Melanoma Patient associations.

For more information on our activities and how to collaborate pleasevisit our website 

http://www.m-icab.org/

FDAclears first melanoma drug to

extend survival

By MATTHEW PERRONE

Washington

Federal health regulators have approved a new cancer drug fromBristol-Myers Squibb that is the first therapy to prolong the lives of patientswith melanoma.

It's the first new drug the Food and Drug Administration hasapproved to treat melanoma since 1998. Older medications have shown few resultsin fighting the difficult-to-treat skin cancer.

The injectable drug, called ipilimumab (ih-pee-LEE-moo-mab),uses the body's immune system to help fight cancer. It differs fromchemotherapy drugs which attack the disease with chemicals.

Studies of the drug, which has the brand name Yervoy (Yehr-VOY),showed patients lived an average of four months longer than those taking oldermedications. While only a small group of patients respond to the drug,researchers say it is an important milestone.

http://www.businessweek.com/ap/financialnews/D9M6C5881.htm 

MPA T-shirts & polo shirts are now on sale. We have a limited number so be quick to purchase yours.

• Polo shirts $25, T-shirts $20 each

"Support our campaign to BAN solariums and save lives!" 

"Do you know the risks?  Melanoma is Deadly Serious" 

Sign the petition at www.sunbedBAN.com