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.
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.
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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BIOETHICS TODAY is the blog of the Alden March Bioethics Institute, presenting topical and timely commentary on issues, trends, and breaking news in the broad arena of bioethics. BIOETHICS TODAY presents interviews, opinion pieces, and ongoing articles on health care policy, end-of-life decision making, emerging issues in genetics and genomics, procreative liberty and reproductive health, ethics in clinical trials, medicine and the media, distributive justice and health care delivery in developing nations, and the intersection of environmental conservation and bioethics.