What are the ethics of crowdsourcing a diagnosis?

About a month ago, I received a request from one of my practice partners.  They are working with a patient with a number of chronic, hard-to-treat medical illnesses that may or may not be part of a single syndrome or underlying problem.  Despite the fact that this physician is an excellent clinician, they have struggled to put the pieces together and are worried that they are missing something.

The e-mail they sent me reads “i have a patient with an odd constellation of chronic medical problems…it seems to me something might tie these together…i mentioned to the patient the crowdsourcing idea on twitter and he was open to trying this”

I have spoken with this physician, but I have not spoken personally with the patient yet.  I have not taken any steps to crowdsource this patient’s illness because I am honestly not sure how best to do it…or even if itshould be done.

So: I would like to crowdsource the ethics of crowdsourcing.  I am hoping to hear from other physicians, but especially from patients and patient advocates who have faced challenging illnesses and diagnoses.

  • Is it appropriate (with a patient’s permission, of course) to post a patient’s medical history in a public forum as a way to consider and evaluate possible diagnoses?
  • If so, what sort of permission is necessary?  Is there some sort of consent form that one can use to ensure that patients understand what it means to have their medical history posted on social media?  If a patient’s symptoms are unique enough, then they can presumably be identified by a reader, so how can this information be posted (or what sort of waiver/consent is needed) to ensure that HIPAA is not violated?
  • I would presume that making the information visible and accessible to the patient would be the best approach–for example, posting as a blog update that they can review and upon which they can comment even during the discussion among physicians.
  • How much do we need to vet this idea/process–if it goes forward–with our health system’s legal department?

I think that there could be great value in using social media as the world’s largest “curbside consult” in which we ask peers to provide suggestions and insight but the primary physician retains sole responsibility to determine treatment plans with their patient.  In essence, the crowdsourcing would be like an enormous brainstorming session to help come up with ideas that the primary physician might have overlooked or failed to consider.

Please send me your thoughts–feel free to comment below.  This feels like an awfully large step, and one that I do not want to take into thin air.

 

21 Responses to What are the ethics of crowdsourcing a diagnosis?

  1. Susan Eller says:

    Mark,

    I have strong feelings about this because I have a friend whose son has a hard to diagnose and hard to treat disease. He spent three years – going to many of “man’s best hospitals” before he finally got a diagnosis. I think that he would have been more than willing to have his case crowd-sourced. His primary care doctor was extremely dedicated and asked for help from his professional colleagues – but maybe crowd-sourcing would have helped.

    I have thoughts about what the privacy should look like, but instead of putting words in his mouth – I sent him the link to your blog. I hope that he – and others like him – can give you the perspective you need from the actual patients.

    • richmonddoc says:

      Thanks for being the first to comment. I look forward to hearing from more folks–I really believe that this might benefit folks, but we must be very careful not to cause inadvertent harms.

  2. Melissa (DrSnit) says:

    In Groopman’s book, “How Doctors Think” a woman’s newly adopted child from Asia would have died had she not crowsourced and gotten information from the Internet (by herself)… the docs she was working with hadn’t SEEN that issue before… she went back and fought to try a special technique and it worked and her daughter is alive.

    Sometimes I think patients with rare (or oddball illnesses) can talk themselves into thinking they are more sick than they are. BUT– when/if doctors are involved – I think we can all use each other to see with new eyes and new ways of thinking… using new or older (tried and true rather than fancy new technology) to diagnose multiple or chronic illnesses.

    I’m a fan of croudsourcing WHEN AND IF something rare and bizarre is presenting itself. I say this because even now I often know my body better than 5 specialists and I live in fear of being killed by too many contraindicating medications (or not enough of the right kind).

    Permission from a consenting patient is what it takes. And then learning from each other is how it works. Professionals who don’t want to be involved WON’T BE. Patients who don’t want to be involved won’t be. The rest will reap the benefits.

  3. Robert West says:

    Personally, I would prefer to have my own health conditions crowdsourced, than continue forever untreated or improperly treated. Not all people feel the same way, though. Depends on the person, as well as the particular medical condition.

    I’m happy to offer up myself as guinea pig if you would like to initiate an experiment.

    Inadvertent harms? Sort of like the Personal Genome Project, where one simply takes a chance, knowing the many risks (after reading and signing a 25 page disclaimer).

  4. 4sn says:

    Hi,

    I am a diabetic from India. I think if my case is complex, I would like to openly put it in blog/twitter & get the crowd sourced opinion on it.(of course with anonymous name).

    Preferrably a closed forum, where my doctor has access. But if not possible, I will be ok with an open forum like blog.

  5. Hi Mark!
    OMG I would absolutely be interested & willing to have my medical condition crowd-sourced if it was challenging my local professionals!! There are so many great suggestions, thoughts, ideas & different approaches to disease treatment from continent to continent, country to country, and even region to region in our own homelands.
    My dad was diagnosed with lung cancer 4 years ago & we knew nothing about treatment options at that time. We relied on our local oncology team to guide him along the appropriate therapy algorithm, only to find out that there were many variations and cross-roads in treatment choices. We were confused & unsure of going left or right. We ended up joining an online cancer support group called Inspire.com & turned to other lung cancer patients who had similar diagnoses but at different stages & had so much to share about the various treatment modalities. People shared how treatments altered lifestyles, & how they combated their side effects. Most importantly, we learned that their were choices outside of what our local professionals were recommending. I guess this example really isnt crowd-sourcing in its pure term, but it was a way for people, like me & my family, with similar needs regarding medical illnesses to connect via the web and learn, share and even benefit from information-gathering online. My dad had 2 different lung surgeries to remove tumors but they grew back. He then had negative responses to 3 different types of chemotherapy, and deteriorated from the treatments. Because of what we learned by reading stories shared by other patients at an online cancer support site, and by emailing questions that were posted to threads & answered by many, we are grateful. We feel that my dad is still here today & doing well because he learned about non-traditional medications & supplements from folks who searched before him. They recommended treatments that were different from guidelines set by the American Cancer Association. Of course these drugs are not covered by Medicare or private insurance, but my dad obtains them online & believes he is alive & well because others shared valuable information with him. So we used the lung cancer crowd to learn about different remedies that helped my father. Crowdsourcing in its purest form could bring only positive results to medical puzzles. There are brilliant people out there who have much to offer—and likewise, there are folks out there with medical needs that have not been met yet. If we can channel medical information and create positive healthcare results, what could be better? To me, that is ethically correct on all levels. Great topic, Mark!! Love it!
    Ellen :)

    • richmonddoc says:

      Thanks for the comment.

      As a patient/family member, what sort of consent would YOU want to see?

      • Good question! How does personal information remain private in a crowdsourcing experience? How can medical records be shared & reviewed without risking privacy issues? An honor system? Some patients present with medical challenges that require review of voluminous numbers of records in order to make educated suggestions. How could a consent form be worded to protect the patient’s privacy yet allow records to be available to qualified providers for reviewing? I would want to be assured that my health information was not getting into the wrong hands by way of crowdsourcing endeavors. :)

  6. Mark says:

    This is interesting on a number of levels many of which have been responded to. I am struck how this mimics adult learning in a small group exercise. Each learner/participant comes to the table set to solve a specific and similar problem they face. Each has an experience with that problem that they want to find some additional solutions to or share what they have learned with others in order to improve their knowledge. As members of the group share their experiences others in the group weigh and measure what they are learning and either choose to include what they’ve learned in their own knowledge or not. What is key here is that each participant is integrating experiences from others into their own experiences.

    What crowding sourcing as presented above is a modified learning exercise and a kind of Wiki. ‘Here is my problem. What have you seen or experienced that can help me with my problem?’ Knowledge based on experience is what this is. I think it works and works well.

    Of course there must be patient protection and privacy. That is an exercise in just plain being smart and careful. It would be interesting to have some institution or academic site create a crowd source sharing site for these tough cases where physicians can register and present cases that can be easily searched and commented on. Patient inclusion is a must as well since they are key in understanding the issues and experiences at hand. The site becomes a community of learning as well as a Wiki which I personally see as future each of us have our own personal wiki of knowledge and experience that is shareable and searchable by others.

  7. Wendy Lee says:

    Wow, I think that’s scary. I wouldn’t mind it being done with my symptoms if I were in that position, but as everyone else seems to agree, I’d want to be sure that only medical people and perhaps other ‘relevant’ patients could see it. But social media, particularly Twitter is open to all kinds of trolls. I recently had a very personally crafted hate tweet just because my profile says I have a bag and I write a blog about it. I know that opens me up to the world at large, but it’s my choice and I think the importance of trying to demystify being an ostomate overrides any other fears. But like I say, it’s my bag, my disease, my choice. And I was still shocked, horrified and upset to get a nasty tweet basically suggesting I was a filthy NHS experiment and that the world would be better when I die soon. I shouldn’t have been hurt – it was, after all, from someone who delightfully refers to themselves as ‘pakisrapekids’ – but it was still a shock.

    So I think my point is that yes, it would be a good idea – we should be able to use social media to improve life and increase information, but I would think there must be a way to do it without opening it up to be read – and possibly trolled – by people who could hurt the patient. Being sick, and particularly not having a definitive diagnosis, is demoralising enough. I think of myself as pretty hardened, and I was quite surprised at how much a single troll tweet bothered me. (It was a bad week, mind you.)

    I think a blog would be the way to go, perhaps? Through a locked Twitter account, maybe? I don’t think trolls bother with blogs – too much reading involved. And with a locked account, the user can make sure only ‘vetted’ people would see what was being tweeted. Quite how you’d set out the criteria for that ‘vetting’, I have no real idea.

    I hope I’m being at least a bit helpful…

    • richmonddoc says:

      Wendy Lee,

      Thanks for the comment–it was very relevant and important for the discussion, as you’ve brought up a few potential significant harms. You also highlight the challenge of balancing the openness needed to get others thinking about a given problem with the unavoidable fact that such openness inherently risks privacy.

      I would think sharing the information on a blog would be the likely venue, if for no other reason than because the amount of information would not easily fit elsewhere. One other benefit: blog comments can be moderated, preventing some of the hateful comments you mention.

      So…I would see two options: 1) limit access to the information, thereby protecting privacy but limiting the audience that could contribute to the problem solving, or 2) open the information to wide access, but inevitably share private information.

      Crowdsourcing could involve ensuring that patients decide: do they want the increased protection, or factor openness? Then, it would seem necessary to get informed consent from the patient, and to explain what their decision will mean in terms of who will have access.

  8. […] About a month ago, I received a request from one of my practice partners.  They are working with a patient with a number of chronic, hard-to-treat medical illnesses that may or may not be part of a…  […]

  9. […] About a month ago, I received a request from one of my practice partners.  They are working with a patient with a number of chronic, hard-to-treat medical illnesses that may or may not be part of a…  […]

  10. Dan Goldman says:

    I am a lawyer for an academic medical center, so I’m more qualified to comment on the legality, than the ethics. From a legal standpoint, it seems like you have two options: either de-identify the info, or get authorization from the patient. HIPAA would be your guide for both of these. Under HIPAA, data is considered de-identified if you remove the 18 identifiers listed in HIPAA (which includes all dates). Google HIPAA Section 154.514(b)(2) and peruse the list of things you have to remove to make the data de-identified. I suspect that in most instances you could remove the identifiers and still be able to share the info you need to crowdsource the diagnosis. If you’re at all unsure, there’s certainly no harm in having the patient authorize the disclosure/publishing of their case history. In that case, the simplest way is to use your facility’s standard HIPAA compliant authorization. Obviously, I can’t give you legal advice, so these are just some off the cuff thoughts. It’s possible that you’re state’ privacy laws could be more stringent than HIPAA, and this might impact the analysis above (for example, we have a medical records law in Minnesota that is more restrictive than HIPAA and doesn’t allow some disclosures that HIPAA would allow). For this reason I would definitely recommend that you run it by your legal department. I know many folks are reticent to do that because they assume it’s the “no” department, but they really are there to help you, and the last thing you want is to inadvertently violate HIPAA or some other privacy laws and create a compliance issue.

  11. Sarah says:

    I am not a patient or a doctor – so coming at this from a different place. I can see the ‘miracle’ examples of where this has worked, but what about the number of times it hasn’t worked, or pointed the wrong direction or created more work having to sift through lots of different routes
    Also, what about the Dr-pt relationship. I honestly can’t say how I’d feel if I had a severe condition, which couldn’t be diagnosed (and I really feel for those in that group), but from where I stand, I see my Dr as the shrewd adviser – (s)he knows where we go next, and I trust him. If he says ‘I have no other solutions – lets put it out to the world’, where does that leave my trust in him?

  12. Lisa Nolan says:

    I’m engrossed in this post and all the replies, although awfully sorry to hear about the upsetting tweet Wendy received – shame there isn’t a virtual firelighter for those ones. Wendy, let me put it in a virtual septic tank for you – that’s where it belongs.

    So much to consider about this topic, but my comment is mainly about the consent from the patient – especially how ‘informed’ it is and what options they have.

    If a patient agrees to have their info (whether vague or detailed) broadcast, are they doing it to find the answer they are looking for? to ‘help’ the HCP? or agreeing blindly because they don’t really understand the implications?

    If they are agreeable in principle but have external influences, (such as not wanting their family/work colleagues to know about their condition or even to know that they are attending the HCP) are they given a real opportunity to reflect on it, to articulate those background worries and to feel they can refuse consent? Comedians make jokes about nursing home patients thinking that their flowerpot is bugged, but I’ve seen older people who have real fears about families circling around a potential inheritance for example – they would not want any hint of impending impairment of mental or physical health broadcast – but would they speak up and say it?

    I imagine the consent would have to be for specific scenarios, e.g. patient understands that the info is potentially identifiable and agrees to that possibility; or patient requests that every effort be made to prevent identification. That would help dictate which forum the info could go on, e.g. public blog/password-protected blog, public Twitter/protected Twitter.

    Every single patient presents an educational opportunity, but consent is the key to that door – and also the foundation stone of any discussion. It has to be there and it has to be strong. Once the appropriate consent is there, I think crowdsourcing is good to go!

    Just my thoughts – constant reflection needed I think!
    Lisa.
    (Just to explain my perspective, I’m an ex-nurse & midwife, now healthcare VA, but also have my Mom/daughter/sister/wife hat on)

  13. I can see some real advantages in crowd-sourcing like this, but a couple of cautions too.

    The first is that, obvious as it counds,you need a crowd to crowd source – the idea being that you will get a range of comments on any extreme views will be diluted/cancelled out by the wisdom of the crowd. So you would need to make sure that you have a big enough audience – a hundred or so followers on Twitter wouldn’t be enough.

    The second is this: What if no answers are found? It would be important to prepare the patient for this. Some will have something rare that their own doctors don’t know about, and the crowd will make a break-through. It’s likely that many more will have medically unexplained symptoms and no diagnosis will be reached – how will the patient cope with the idea that the whole of Twitter has failed to help them as well as the local doctors/experts that have so far failed to find a diagnosis?

  14. richmonddoc says:

    Excellent points and comments all; thanks!

    The overall sense seems to be that there is some value (at least the potential of value) in crowdsourcing, but that the process and preparation for doing so are very important.

    –As Dan Goldman noted: we need legal consent to do this.

    –As per Lisa and Sarah’s comments: there needs to be preparation for the patient to understand what the nature of this disclosure will be. ALL information posted will be visible to anyone. This needs to be approached as part of the diagnostic process, with an understanding between physician and patient that all we are looking for are new ideas and suggestions–this would not take the place of the hard work already done, but help ensure that no options or alternatives are overlooked.

    –As Martin and Sarah both noted, the patient and physician both need to be prepared in case no clear answer is found, and no advantage gained, from crowdsourcing. This does not mean that we have failed…rather, it helps us ensure we have covered the necessary bases.

  15. Great post buddy~ !

    As both a practicing physician, and someone who routinely reaches out to my peers via open social channels for dealing with medical issues as they relate to my children— I am in full support of crowdsourcing medical conditions in difficult cases. As someone who has been active in social media and medicine for years now I have personally assisted people in over 40 countries… There is no question this has a role in the future of managing and diagnosing difficult cases… as long as the rules of the road are known, and the patient is willing to have their case “put out there” —forever—.
    Howard Luks MD

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