Hope Alexander MPH

Posts Tagged ‘ethics’

An introduction to Enduring Powers of Guardianship and Advance Health Directives – a media release from the Office of the Public Advocate.

SERVICE PROVIDER TRAINING SESSION

An introduction to Enduring Powers of Guardianship and Advance Health Directives

On 15 February 2010 legislation came into effect in WA which enables adults to make an Enduring Power of Guardianship (EPG) and an Advance Health Directive (AHD).

These tools give adults with capacity, the power to direct how personal, lifestyle and treatment decisions would be made if they lost the capacity to make these decisions themselves.

Following the session, participants will have an understanding of:

§        the amendments to the Guardianship and Administration Act 1990

§        the legislative requirements of completing an EPG and an AHD

§        how EPGs and AHDs will operate

§        the amended hierarchy of decision-makers for treatment decisions

§        the legal responsibilities of service providers with regard to the new legislation and how they will be able to assist their clients.

This session is aimed at service providers in the health, aged-care disability and related sectors, however members of the public who are interested in attending are also welcome.

The Session is free but registration is essential

Light refreshments provided

Session Details

Date:            Tuesday 9 November, 2010

Time:           1.30pm –4.30pm

Venue:         Main Hall, Garry Holland Community Centre, 19 Kent Street, Rockingham

Hope was invited to contribute to DVD content and attend a focus group, the outcome of which will be used to to develop a DVD for WA consumers with a long term condition.

The researchers are particularly interested in learning about the experiences/difficulties we or someone we care for have encountered in managing a long term condition and ways we have overcome them.

This study has been approved by the Curtin University Human Research Ethics Committee. The Principal Investigator is Professor Duncan Boldy of the Centre for Research into Disability and Society, School of Occupational Therapy and Social Work, Curtin University. The Project Officer is Doctor Setareh Ghahari.

Hope has been invited to participate in the inaugural annual Conference of the Australasian Association of Bioethics and Health Law [AABHL] in July 2010. The AABHL will replace the Australasian Bioethics Association and Australasian and New Zealand Institute of Health Law and Ethics which have traditionally held joint meetings.

Hope’s abstract submission will discuss “Bioethics and health law – a consumer perspective”.

The Conference will be held at the University of Adelaide North Terrace campus, South Australia, commencing Thursday evening and concluding Sunday.

Choice… do we have any?

Who chooses what is ethical? Who should choose? What shapes choice?

Researchers, practitioners, politicians, lawyers and commercial interests have an impact on matters that the community might consider to be their choice. How do we ensure the public is informed about and engaged with the work of bioethics? The 2010 AABHL Conference will explore questions of choice across many settings from:

· The theoretical to the practical

· Research to application

· Law to policy and practice

The Conference will bring together representatives from around Australia, the Pacific and Asia for a series of plenary lectures and contributed papers that will ensure a vibrant and exciting program.

The draft document “Guidelines for Human Biobanks, Genetic Research Databases & Associated Data” (July 2009) is being prepared for release for public comment.

The Office of Population Health Genomics (Public Health Division) WA Health has been coordinating the development of guidelines which provide principles and best practices for the establishment, management and operation of research biobanks and DNA databases in WA. The guidelines have been developed for WA Health but are intended for use by both government and non-government research organisations in WA.

Hope received formal acknowledgement that she “has been involved in the stakeholder consultation process, contributing to the two community consultation events which informed the development of the guidelines … also gave a presentation on the consumer perspective. An acknowledgement has been included on pages x and xii that mention her by name.”

http://www.genomics.health.wa.gov.au/home/

Norman Swan on The Health Report on ABC Radio National, 10 August 2009, interviewed Anne McKenzie who is a consumer advocate in the School of Population Health at the University of Western Australia, Hope Alexander, a consumer member of their Research Advisory Panel, and Kos Sclavos, president of the Pharmacy Guild of Australia. The topic of discussion was “Labelling of medications dispensed by pharmacists”.

Labelling of medications dispensed by pharmacists

“Health consumer advocates have uncovered what they feel might be an unacceptable level of pharmacists dispensing medications with ‘use as directed’ or equivalent on the label. They argue that this is dangerous and should not happen.”

The Health Report transcript can be read here:
http://www.abc.net.au/rn/healthreport/stories/2009/2647591.htm

The Health Report transcript can be listened to here:
http://mpegmedia.abc.net.au/rn/podcast/2009/08/hrt_20090810_0841.mp3

On 7 July 2009 Hope attended the public consultation in Perth for the Acts Amendment (Consent to Medical Treatment) Act 2008, the event was hosted by the WA Department of Health and the Office of the Public Advocate.

Hope attended in her position as a Consumer Representative/Board Member of the Genetic Support Council WA (GSCWA). This public consultation was an information session about the Advance Health Directive and Enduring Power of Guardianship.

The Office of Population Health Genomics, Department of Health has cordially invited Hope to attend a seminar titled “Challenges for Society in the Genetic Information Age”. This event will be held on the Monday 11th May at Grace Vaughn House, 227 Stubbs Tce, Shenton Park.

This seminar will focus on genomics, ethics, biobanks, biobanking community forums similar to the one Hope presented at and participated in 2008, held in Canada.

Event: 11 May 2009 - Challenges for Society in the Genetic Information Age