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.