Public comment:Sarcoma/General comments

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General comment re consumer perspective114:50, 19 November 2013

General comment re consumer perspective

Submission received from Carol Bennett, Chief Executive Officer, Consumers Health Forum of Australia dated 3 October 2013

The Consumers Health Forum of Australia (CHF) welcomes the opportunity to provide a submission in response to the Public Consultation on Clinical Practice Guidelines for the Management of Sarcoma (the draft Guidelines).

CHF is the national peak body representing the interests of Australian healthcare consumers. CHF works to achieve safe, quality, timely healthcare for all Australians, supported by accessible health information and systems.

While we do not have the capacity to provide detailed feedback on the technical aspects of the consultation, CHF welcomes the development of the draft Guidelines.

Overall, CHF supports these guidelines, which bring together the best available evidence to underpin scientifically-valid recommendations and support health practitioners in the diagnosis and treatment of care of patients with Sarcoma.

We understand that the aim of the draft guidelines was to reduce the significant variation in the way clinicians manage Sarcoma in Australia at present and are pleased to note the inclusion of a consumer representative on the Guideline’s Working Group.

However, the emphasis on informed consent and ensuring the consumer understands the treatment options relating to Sarcoma should be strengthened in the Guidelines. In its current state, the Guidelines promote the importance of health practitioners being aware of the clinical pathway for a Sarcoma patient, but do not explicitly suggest that the consumer should be, or how the practitioner plans to make them, involved in their own healthcare journey.

These Guidelines should highlight the importance of engaging in a dialogue with the consumer about their treatment options. CHF would recommend that the Guidelines include an emphasis on ensuring that consumers understand the information that has been communicated to them. The Sarcoma guidelines, and all other guidelines that are being considered for development, should focus on informed consumer consent as an ongoing process rather than a one-off activity.

In order to support consumers ability to engage with clinicians, CHF would also recommend the development of a separate consumer friendly version of the guidelines.

CHF appreciates the opportunity to provide a submission in response to the draft Guidelines, and looks forward the outcomes of the public consultation.

[[User:Consumers Health Forum of Australia|]]16:00, 3 October 2013
Edited by another user.
Last edit: 14:50, 19 November 2013

Dear Carol,

Thank you for providing your submission in relation to the public consultation for the Draft Clinical Practice Guidelines for the Management of Adult Onset Sarcoma.

The Working Party met last month to consider all public comments and agree with the issues you have raised in your submission.

Cancer Council Australia do not intend at this stage to develop consumer guidelines now that online wiki-based clinical guidelines are easier to access and navigate. However, we have included a heading on the Guidelines Content page “Information for Consumers” providing links to useful consumer resources that are already available. You can view this from the Sarcoma Guidelines Contents page above.

We have also included a Foreword on the Contents page to give an overview of the Guidelines and to direct consumers and all readers to this additional information provided with the guidelines.

The Guidelines are planned for launch on Friday 15 November 2013.

We appreciate your feedback.

Kind regards, Christine Vuletich Manager, Clinical Guidelines Network Cancer Council Australia

Christine Vuletich15:07, 7 November 2013