Quote Of The Year

Quote Of The Year - Paul Shetler - "Its not Your Health Record it's a Government Record Of Your Health Information"

Tuesday, October 03, 2017

A Major Consultation Is About To Begin On The Secondary Use Of myHR Information.

This appeared in the e-mail last Friday.
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Subject:    Secondary Uses of My Health Record Systems Data - Factsheet 3
Date:         Fri, 29 Sep 2017 16:22:31 +1000
From:        Lisa Fodero
To:              Name.
Dear Name.
HealthConsult have been engaged by the Department of Health develop a Framework for the secondary use of data in My Health Record. Public consultations are about to commence.
There will be multiple opportunities to contribute to the development of the draft Framework through workshops across the country, two webinars, an online survey and written submissions.
A Public Consultation Paper will be released on  Thursday 5 October 2017. The consultation process will close at midnight on Thursday 17 November 2017.
You can find more information about the project in the attached Fact Sheet and via the project website .
*Registrations are open NOW to:
  * attend a workshop  .
  * participate in a webinar - 12 October 2017   or 16 November 2017     
  * receive future updates about the project. 
We encourage you to forward this email to colleagues that might also be interested.
Please do not hesitate to contact me should you have any questions.
We look forward to your participation in the project.
*Dr Lisa Fodero, PhD |Director |*HealthConsult Pty Ltd
*Sydney Office:*3/ 86 Liverpool Street, Sydney NSW 2000
P:02 9264 1805 M:0414 185 711
---- End E-mail
More details were attached to the e-mail.

Fact Sheet 3: How to participate in the Public Consultation Process for the “Development of a Framework for Secondary Use of My Health Record System Data” project

HealthConsult has been engaged to assist the Australian Government in developing a framework for the secondary use of data in the My Health Record system for research, policy, planning, system use, quality improvement, and evaluation activities.
Under the My Health Records Act 2012, health information in My Health Record may be collected, used and disclosed “for any purpose” with the consent of the healthcare recipient. In addition, one of the functions of the System Operator (the Australian Digital Health Agency) is “to prepare and provide de-identified data for research and public health purposes.” Before these provisions of the Act will be implemented, a framework for secondary use of My Health Record system data must be established.
HealthConsult’s role is to develop a draft Framework and associated draft Implementation Plan that will facilitate the secondary uses of My Health Record system data. HealthConsult is committed to working with stakeholders including the broader community to shape the development of the Framework.
HOW TO BECOME INVOLVED IN THE PUBLIC CONSULTATION PROCESS
Your input is encouraged to ensure that each component of the Framework appropriately reflects the views of the community. HealthConsult is keen to hear views and ideas from all individuals and/or organisations, including My Health Record users (e.g. patients and health care providers) and those that may seek access to the My Health Record data for secondary purposes (e.g. government, non-government, private organisations; and universities and the research sector). HealthConsult invites respondents to share their views on matters that should be considered prior to drafting the Framework.
Everyone is invited to participate in this consultation process. There are a number of methods, as outlined below, by which you can become involved and share and discuss your views.
MAKE A WRITTEN SUBMISSION
Following the release of a Public Consultation Paper on the Thursday 5 October 2017, HealthConsult will be accepting written submissions until midnight AEDT on Friday 17 November, 2017. Submissions will not be accepted after this date. Please ensure your submission includes:
·         date of submission;
·         your name or the name of your organisation; and
·         your details or those of a nominated representative from your organisation that HealthConsult can contact should we wish to engage in a follow up discussion on the issues raised in your submission.
It is important that you read the Public Consultation Paper before preparing your submission. You may wish to use the Submission Template which will be available from 5 October 2017. Submissions that directly address the consultation questions will be most helpful. A ‘Plain English’ companion to the Consultation Paper is also available.
COMPLETE THE ONLINE SURVEY
An online survey, will allow you to provide semi-structured input against the questions in the Public Consultation Paper (available at https://www.surveymonkey.com/r/MHRFramework from 5 October 2017). You can complete the survey at any time up until midnight AEDT on Friday 17 November 2017. You can complete the survey even if your organisation chooses to make a written submission. Surveys will not be accepted after this date.
ATTEND ONE OF THE NATIONAL WEBINARS
On Thursday 12 October, 2017 at 10.30 am AEDT there will be a live national webinar that will present the Public Consultation Paper, introduce the consultation process and provide for your input via live questions. To register for the webinar please visit the webinar registration page. If you cannot participate during the live webinar, you will be able to view a recording of the webinar by visiting http://www.myhealthrecorddata.healthconsult.com.au after 16 October, 2017.
On Thursday 16 November, 2017 at 12.30 pm AEDT the Consumers Health Forum (CHF) will facilitate a webinar to summarise and seek feedback from consumers on the themes that have been raised during the course of the consultations. To register for this CHF webinar, please visit: [https://chf.org.au/events/webinar-secondary-use-my-health-record-data].
ATTEND A WORKSHOP
There will be 12 workshops scheduled across the country. At each workshop, there will be a short presentation of the Public Consultation Paper, followed by a question and answer session, through which stakeholders can provide input.
The workshop details are:
·         Workshop 1: Sydney, NSW on Monday 16 October, 2017 at 10.30 am – 12 pm, The Grace Hotel, 77 York Street, Sydney.
·         Workshop 2: Newcastle, NSW on Tuesday 17 October, 2017 at 10.30 am – 12 pm, Novotel Newcastle Beach, 5 King Street, Newcastle.
·         Workshop 3: Cairns, QLD on Wednesday 18 October, 2017 at 3 pm – 4.30 pm, Pacific Hotel Cairns, 45 The Esplanade, Cairns.
·         Workshop 4: Brisbane, QLD on Friday 20 October, 2017 at 10.30 am – 12 pm, The Treasury Hotel & Casino, 139 William Street, Brisbane.
·         Workshop 5: Hobart, TAS on Monday 23 October, 2016 at 2.30 pm – 4 pm, The Old Wool Store, 1 Macquarie Street, Hobart.
·         Workshop 6: Melbourne, VIC on Tuesday 31 October, 2017 at 2.30 pm – 4 pm, Stamford Plaza Melbourne, 111 Little Collins Street, Melbourne.
·         Workshop 7: Adelaide, SA on Friday 3 November, 2017, at 2.30 pm – 4 pm, Mayfair Hotel, 45 King William Street, Adelaide.
·         Workshop 8: Perth, WA on Tuesday 7 November, 2017 at 10.30 am – 12 pm, Novotel Perth Langley, 221 Adelaide Terrace, Perth.
·         Workshop 9: Alice Springs, NT on Thursday 9 November at 10.30 am – 12 pm, Alice Springs Convention Centre, 93 Barrett Drive, Alice Springs.
·         Workshop 10: Darwin, NT on Friday 10 November at 9 am – 10.30 am, Mantra Pandanas, 43 Knuckey St, Darwin.
·         Workshop 11: Blue Mountains, NSW on Monday 13 November at 10.30 am – 12 pm, Wentworth Healthcare, Werrington Park Corporate Centre, 14 Great Western Highway, Kingswood.
·         Workshop 12: Canberra, ACT on Wednesday 15 November at 2.30 pm – 4 pm, Rydges Capital Hill, cnr Canberra Avenue and National Circuit, Forrest.
To register to attend a workshop please visit the workshop registration page. Please note seats to these events will be allocated on a first come first served basis. The number of remaining spaces for each workshop is shown on each location’s registration page.
REQUEST AN INTERVIEW
Should you be unable to attend one of the workshops, or you wish to provide your input on a more confidential basis, you can request a one-on-one interview (of about 45 minutes) with a member of the HealthConsult team by registering at http://www.myhealthrecorddata.healthconsult.com.au (under ‘public consultation’ tab). One on one interviews can be held in-person at times when the project team is on location for the workshops, or by telephone. Again, the number of available interviews is limited, so please register your interest early.
PROJECT CONTACT DETAILS
To register your interest in participating in the public consultation process, please visit www.MyHealthRecorddata.healthconsult.com.au or send an email to MyHealthRecorddata@healthconsult.com.au.
For all other details about the project please contact:
Lisa Fodero                                                                              Bec Sykes
Director                                                                                    Director, Digital Health Branch
HealthConsult Pty Ltd                                                            Department of Health
E: lisa.fodero@healthconsult.com.au                                 E: Bec.Sykes@health.gov.au
P: 02 9261 3707                                                                       P: 02 6289 8074
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What is interesting about all this just why the detailed personal information would be interesting to anyone given the really unknown quality and the incompleteness of the data in the myHR, especially without the agreement of the person involved.
It is also of interest that not only was the first attempt at developing a framework apparently abandoned and according to the ADHA Board notes of August there is real uncertainty as to what the public will actually accept.
We need to be cognisant that in the UK a similar involuntary project called care.data was scrubbed due to public opinion. The ADHA CEO was heavily involved in this program in the UK I believe.
Reading here will explain what happened in the UK:

NHS care.data scheme closed after years of controversy

NHS England was criticised for poorly explaining the purpose of the scheme after more than one million people opted-out

Wednesday 6 July 2016

The government's controversial care.data NHS information sharing scheme has been closed. The decision, announced by minister for life sciences George Freeman, follows a review into safeguards around the sharing of patient data by National Data Guardian Fiona Caldicott.

Though care.data has been closed, Freeman said NHS England and the government "remain absolutely committed to realising the benefits of sharing information" to improve patient care.First announced in 2013, the NHS England programme aimed to bring together health and social care information from across the NHS for the benefit of "patient care". The pseudonymous data could then be used by researchers to develop new treatments and assess performance of NHS services.

The beleaguered scheme faced almost relentless criticism since it was first announced three years ago. Concerns centred around the sharing of sensitive medical information with commercial companies without the explicit consent of patients. More than one million people opted out of the scheme.

Data on stays in NHS hospitals, known as hospital episode statistics, have been collected and analysed since 1989, but care.data proposed an expansion of this database to include GPs. Critics argued NHS England failed to communicate the purpose of the scheme.Care.data was plagued by delays and controversies throughout its ill-fated existence. It was paused three times before eventually starting as a small-scale trial in four areas in June 2015, only for health secretary Jeremy Hunt to pause it again while Caldicott's review took place. While the review didn't look into care.data specifically, its recommendations around proposed consent and opt-out models effectively killed-off the project.

Commenting on the report's findings, Professor Sheila Bird at Strathclyde University’s Department of Mathematics and Statistics said: "Data-sharing as proposed by care.data was disastrously incompetent – both ethically and technically. Professionals rebelled and prevailed in outcasting care.data, thereby ensuring that future proposals will not succeed unless both technically proficient and in the public interest."

Lots more here:

http://www.wired.co.uk/article/care-data-nhs-england-closed

The discussion paper on the 5th of October will be very interesting indeed and needs to be carefully considered.

David.

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