Thanks for this Molly.
I followed this up and this is the reply from the Brisbane meeting for anyone who is interested.
Update 30 May 2012
re UPDATE: LDN in AUSTRALIA and Strategic Review of Health & Medical Research
Submission No. 296 - Cris Kerr, Case Health
(
http://mckeonreview.org.au/sub/296_Cris_Kerr_Case_Health.pdf)
First, thank you to all for expressing an interest in the progress of this review with regard to building evidence for the efficacy and safety of LDN (and everything else) through Australia's new ehealth system.
As you already know I've proposed our govt should provide capacity for patients to self-report their health outcomes in structured ways within their own ehealth records, with a view to building a new population health database that captures the right information from the right person at the right time - the person at the centre of all health activity, the patient - you :-)
By filling the huge gaps in our country's collected health information, we can then improve our understanding of early development of disease, treatment efficacy and safety, how to better prioritise research funding, perform comparative treatment effectiveness research, develop better health policies, etc, etc.
Brisbane Public Meeting 29.5.12
No agenda was issued for the meeting so I wasn't sure what format it would take and how best to prepare.
A member of this group accompanied me (thank you Marie, your moral support helped calm my nerves).
I was advised of the wrong meeting room location, and on arrival, it appeared one of the 'private'
meetings the group's holding around the country was taking place there, so I was redirected to the 'public' meeting room.
I didn't count and am not good at estimating group numbers... but maybe 60-80 were in attendance.
Apart from Marie and I, the group consisted of university research professors, PhD students, research fellows, etc from private and public research institutions, universities, hospitals, etc.
I was expecting a full panel but only two members were in attendance - Simon McKeon and Prof Melissa Little - and we were advised Elizabeth Alexander was in another location but was listening to proceedings.
Microphones were positioned between three groups of chairs, directed at the dais, so those who wanted to speak needed to line up behind the microphones.
Along with everyone else, I lined up at the microphone when the opportunity presented.
During the 2 hours, the microphone 'floor' was mostly held by vocal researchers struggling with what is an inefficient and semi-transparent H & MR framework and grants system, and an industry with poor collaborative frameworks, career prospects, etc.
Researchers struggle with short-term opportunities/grants that leave them jobless at the end, force many wasted hours in grant preparations/applications, and an industry that provides limited career opportunities, and fails to fully engage their skillsets, etc. (If you read the Maira Gironi's interview in my book, you'll see what Maira went through to conduct and publish the results of her limited LDN/MS trial.)
I felt for the plight of all the researchers and could see many opportunities for collaborative and co-ordinated improvement... but I won't digress on that topic here.
Being mindful of those waiting to have their say, I tried to be brief on the microphone, but with so much more to add, and the only one there to add a patient perspective along with a proposed solution, I felt justified in returning to the microphone on two more occasions during the 2 hours (but it did strain the panel's patience a little).
I raised LDN, of course - lack of/need for LDN research - the need for population health data to fill gaps in health info - the absence of any govt body to act on LDN - the need to facilitate patient's routinely self-reporting their health outcomes and the many opportunities presented by ehealth, etc. (The chair said they hadn't heard of it before so again, it appears my submission hadn't been read.) A couple of others mentioned ehealth and one of the various collections of health data that do exist.
Before the meeting I'd hoped researchers would see the value in what was proposed and be curious and enthused about its potential with regard to health and medical research, but the room was full of people who either had no research job, no job prospects, or whose jobs were terminating along with their grant funds with no future prospects... so most were there to vocalize a high degree of discontent.
I had to accept the futility of trying to enthuse a group of people who've lost jobs, are worried about losing their jobs, or have been unable to find suitable work in an industry with many associated problems.
So unfortunately, there wasn't an opportunity to express all I'd hoped to express and so I must report the exercise was not as worthwhile as I'd hoped... but I'm pleased they did at least acknowledge the problem of having no specified responsible party to respond to LDN (which has not occurred previously), but there was no acknowledgement of the proposed solution.
Curiously, the panel directly asked the audience of researchers to propose solutions (rather than just air problems) - fair enough - but by doing so, inferred no proposed solutions had been tendered. Ouch!
So I'm left with real doubts about whether all the submissions were read by those responsible for the review, yet again curiously, the chair invited the group to tender more submissions?
Their strategic review report is due before the end of the year. That report will determine the framework for the next 10 years and the door will close.
So I have to apologize... I don't have anything positive or concrete to report, and was left with the impression I've been ineffective in raising this priority... the optimist in me wants to hold some small hope that acknowledgement (for the first time) was a good sign that they will at least consider... but I don't really know... and to what degree and how it might pan out is the now the bigger question... especially with regard to which overarching path they choose and whose 'best interests' end up being prioritised... remembering they conducted both private interest (private
meetings) and public interest (public meetings).
For me, it's back to chipping away and watchful waiting.
I'll update again - but likely much later when more is known.
PS Sorry I don't have sufficient spare time to send individual notices to all, but hope you'll understand :-)
All my best,
Cris Kerr
Volunteer Advocate for the value of patient testimony & Community Health Researcher 'Those Who Suffer Much, Know Much', 5th edition, 2010
http://www.ldnresearchtrustfiles.co.uk/docs/2010.pdfEx Administrator - 'Case Health - Health Success Stories' website (May 2001 to May 2009 - casehealth.com.au & casehealth.com)
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