Quote:
Originally Posted by swept
Establish an Independent PWP Voice
Independent PWP should be a patient advocate group independent of established charities and aware of the value of medical research to both public health
and to the global economy. Experienced patient advocates taking the voice of PWP to clinicians the public pharmaceuticals and the medical research community strategically led on behalf of PWP patients.
Effective Patient Input
“Decisions about me not without me”
Doldrums and Depression weve no time for such luxury ladies.
Networks such as this forum are a valuable tool for all PWP and perhaps they should be given credible status as a resource worthy of recognition and inclusion by clinicians and researchers and managers of health systems
Improving Health Care PWP for ourselves.our future
The future must be with electronic and patient held records. Electronic records must involve some form of international co-ordination in the development processes or the tragic waste of shared information continues, security and access to data should protect but not obstruct.
The possibilitys are incredible but the obstacles are endless
Better data quality and collecting, potential to speed up research initiatives development and outcomes.
Earlier assessment and treatment for problems with medications, better access and co-ordination of care between clinicians.On and on.
Accredited researchers should be required to share results of any research surely its about progress saving lives not protectionism.Any chance?
How do we do it?
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Most of the suggestions in your list are set up already. We have a champion for electronic records and we have an independent org ready. I think the first step is to set up a method of communication and suggest Skype because it's free and we wrote a book using it.
Our first priority is to finish our book, but i see no reasons why we couldn't set up communication; the more there are of us, the more projects will be going simultaneously.
Then we can determine what the most pressing needs are and go about speaking, researching, interviewing and informing people . We are going to use our PCC site to expand on topics in depth, interview people, blogs, news, data collection, and just continue in a creative format similar to our book. Once we start talking, ideas will be abundant. IMHO
Thanks for your input!! keep it coming!