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07/01/2014

Health Care and Crowdsourcing: A CrowdCry For Help.

Crowdsourcing seems this month’s health care buzzword. It is
everywhere. I’ve seen it used in three different health care contexts over the
last months: 1) as a means to raise money for treatment, 2) as a means to gain
access to treatments, and 3) as a means to help medical diagnoses.  In thinking about these contexts I found
myself asking: Would I use it, or would I not? I am curious to hear if you
would use the tool of crowdsourcing, after I give my ideas. Please feel free to
comment at the end of my post.

What is
crowdsourcing?

The dictionary defines crowdsourcing as: “the practice of
obtaining needed services, ideas, or content by soliciting contributions from a
large group of people and especially from the online community rather than from
traditional employees or suppliers”
. In my own
terms, crowdsourcing is an appeal to the online crowd/public to assist in a
specific endeavor, like the above. Crowdsourcing is about ‘power in numbers’.  It could be an appeal to the public to raise
money, signatures, or to gather information/expertise. 

Crowdsourcing
examples

A first recent crowdsourcing references appeared in the
context of raising
money for treatment of a special needs child
. Although, the term
crowdsourcing only led indirectly to the money for this goal, plenty of
direct examples of this type of crowdsourcing
can be found on the internet.
My concerns about crowd-use for this reason are limited. This use of crowdsourcing,
or crowdfunding, does not seem much different from fund raising overall. Crowdfunding
does attach to a particular and individualized case, raising some concerns.
Yet, the balance of benefits and harms would seem less distorted than for the
following two examples.

A second example appeared in the context of a petition that a
7-year old boy should get access to experimental treatments
. Here a crowd
of 20.000 people signed a petition and persuaded a company to give access to an
experimental treatment for this 7 year old. The company initially refused to
give access to this drug, but contacted the FDA based on public pressure. After
seeming pressure of these outsiders, the company opened up access.

On the individual level, this use of the crowd could be
deemed a success as the boy was indeed given the drug. On a bigger picture
level, this use of the crowd may not have been as positive. Would I use the
crowd to gain this access, I’m not sure. I see some potential harms that I
would be concerned about. I’ll expand on this below.

A third example of crowdsourcing came in the news via Dr
McDreamy, a doctor in Grey’s Anatomy. He signed up to
invest in ‘real doctoring’, via a health crowdsourcing platform
: Crowdmed.
This website
offers a platform for individuals to submit medical problems, in the hope
that the ‘crowd’ will find a diagnosis, treatment or better outcome. This
context, in my opinion, raises most concerns about use of the crowd.

Crowdsource concerns*

I believe there is one common denominator in all three usages
that creates concerns: an individualized and personal health story. This story
is devastating in most cases: an incurable illness, a rare health condition.
The story appeals to the crowd; it makes them want to contribute. The flipside
of this story is vulnerability, including vulnerable individuals and vulnerable
health information.

By presenting the crowd with an individualized context, this
vulnerable health information is released and connected to a person. It is
visible for the (future) employer, (future) insurer and (future) social
context. No need to say more here about the risks that this may entail.
Furthermore, part of this health information will be electronically sealed in
the public sphere, at least semi-permanently. (I’m not sure that the ‘right
to be forgotten’
will work out as well and I am unsure how the geographical
boundaries will work between the internet in the USA versus the internet in
Europe for example)  All of this raises
concerns about issues like privacy, discrimination or stigmatization. We’ve
seen concerns about these issues already expressed in general literature about
the use of social media, or the use of social media in health care.

The more information is in the public domain, the more
vulnerable an individual becomes. Crowdfunding may need limited health
information, and certainly much less than Crowddiagnosing does. My concerns are
about crowdfunding are therefore limited. However, my concerns are enlarged in
relation to crowddiagnosing. When I peruse the crowdmed website, individuals
post their X-rays, medical files and other information. I believe that this is
extensive information, which may not be anonymized optimally, despite the use
of pseudonyms. I believe the risk of potential harm is significant. Privacy
cannot be optimially maintained, and the potential use of information for
purposes like discrimination is significant. While some literature suggest
solutions for potential breaches of privacy, e.g. adopting a specific
definition of privacy or by stewartship responsibilities, I am unsure that
these measures will help. The information is out there, in the public domain. I
am unsure how can we really restrict the use of this information.

Concerns about crowdsourcing as a means to gain access to
experimental treatment are somewhat different. They do not necessarily require release
of much vulnerable health information, even though they may entail details on
the drug provided to the patient. Concerns in this realm relate mostly to fears
for public health, by compromising the clinical trials system. For example, compassionate
use, or access to treatments outside of a clinical trial, might entail a
set-back in science. I.e. where the drug is given to an individual that may not
be as stringently controlled as clinical trial participants, and something may
go wrong, the development of the drug through the clinical trial system may
come to a halt. This may postpone availability of the drug for many people that
could benefit from it. Public pressure and signatures may hasten the process of
compassionate use or make it less rigid: Under public pressure many blinds
spots towards risk may arise.

Would I use these
crowdsources?

I would like to think that I trust my real doctors to do the
best they can to find a diagnosis. I would like to think that I trust them as
experts and I would like to think that I would not use a crowddiagnosing
source. I would not want to release as much private information as may be
necessary for a Medical Detective (crowdmed) to get my diagnosis. Moreover, I
would not want to create a risk to public health, as I understand that public
pressure may be hard to resist. However, if I had or knew someone with a
devastating and diagnosable illness, or with an illness that had a tiny chance
to profit from a medicine that was just not yet on the market, would I still
not use it?  I think I would probably
express a Crowdcry for help.

What would you do?

 

*There are many concerns related to crowdsourcing. This is
just a snapshot of concerns

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI’s online graduate programs, please visit our website.

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