Tuesday, December 10, 2013

A Californian approach to working with patient advocates

This post originally appeared 12/06/13 on the Canadian Stem Cell Network's Signals blog.

To be, or not to be, that is the question:
Whether ’tis Nobler in the mind to suffer
The Slings and Arrows of outrageous Fortune,
Or to take Arms against a Sea of troubles,
And by opposing end them

We know this famous soliloquy from Shakespeare’s Hamlet, but the words take on a different meaning when spoken by a patient advocate such as Don C. Reed, who spoke yesterday in a session at the World Stem Cell Summit, taking place in San Diego. Reed used Hamlet’s anguish as an analogy to the struggles of patients and patient advocates as they work to get more research directed towards finding cures. In overcoming these struggles, Reed commented that while the fight appears to be massive, the best way to approach it is to view it as a series of simple tasks. He should know, as he was one of the driving forces behind the passing of California’s momentous Proposition 71 in 2004.

Given that this meeting is taking place in California, it is quite fitting that the Summit should focus not just on advocacy, as it always does (it’s one of the things that makes this meeting different from others in the space), but specifically on advocacy in California. Speakers from the California Institute for Regenerative Medicine (CIRM) have been quite prominent on the agenda, and it’s quite evident just how closely entwined the patients and patient advocates are within the structure and goals of the agency.

In a session on new technologies and infrastructures to empower patients, CIRM’s communications manager, Amy Adams spoke about how people get access to information and the importance of providing accurate information as a way to truly empower patients and the public. She cited a Pew Internet health survey, which found that 59% of Americans get medical information online; 35% of American adults are seeking a diagnosis for a medical condition. For that percentage who do seek a diagnosis, 41% confirmed their diagnosis with a doctor, 18% self-diagnosed incorrectly and 35% did not seek confirmation with a medical professional. This reality further underscores the need for reliable, accurate information, but it also speaks to a further need to ensure that those who are seeking medical information online are media literate: to know how to sift through and find what’s credible. Adams outlined some simple questions to keep in mind, such as who runs the website, what does it say (i.e. is it too good to be true?), when was the information posted or reviewed, where did it come from (i.e. is there a scientific basis for claims?) and why did the company or organization post it.

Like CIRM, the Stem Cell Network (and I’m certain all entities of similar nature) receives a fair amount of emails from people who are interested in learning more about stem cell therapies. These queries run the gamut from general information about stem cells to specific questions about an unregulated clinic or a clinical trial. It is because of this interest that we created a series of research summaries that outline current directions in research for a number of disease areas. But I was interested to hear in this session that CIRM is taking this a step further and is working to launch Alpha Stem Cell Clinics in 2014. Bolstered by a $70 million investment over the next 5 years, these clinics will serve a a bricks and mortar destination for people to get appropriate information, counselling resources and referrals for stem cell clinical trials and therapies. It seems a logical next step for an agency that has worked hard to deliver stem cell therapies to its state populace and to the many patients hoping for a cure.

Lisa Willemse

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