Watching the remarkable Xeni Jardin tweet her mammogram and cancer diagnosis, then blog eloquently about it, then crowdsource opening up her own MRI data makes me ask: Why are we so secretive about sickness and health? And what do we lose because we are?
The answers to the first questions are fairly obvious. First, we keep our sicknesses secret, we say, because we fear we could lose insurance. Except insurance companies force us to reveal our medical histories anyway. And let’s hope that Obamacare — may it survive the Supreme Court — succeeds in outlawing the denial of health coverage due to preexisting conditions. Next, we fear that we could lose jobs. Except in cases where a condition would affect job safety, shouldn’t employers be told that they cannot discriminate on the basis of health? Whether or not society chooses to address these issues through legislation, my point is that it’s possible to do so.
The other reason we keep sickness secret — the bigger reason — is stigma. We don’t want people to know we’re ill. But in this day and age, why should anyone be ashamed of being sick? To be clear, I am not saying that anyone should ever be forced to reveal health information. But why should our norms, stigmas, and economic considerations force us not to reveal it?
Imagine if we didn’t feel compelled to hide our illnesses. Imagine if we could be open about our health. What good could come of that?
We could learn more about correlations, which could yield information about causation and even cures. Given large data sets, we could find out that people who get a disease share common behaviors or characteristics. We might gain the opportunity to discover an environmental cause to a local outbreak of, say, breast cancer, enabling a community to fix the condition and prevent more cases.
Of course, I want to emphasize the conditional: correlation *could* help. One data point is never meaningful: That I’ve contracted one heart condition and two cancers since being at the World Trade Center on 9/11 is meaningless — unless there are many others in the same boat, and even then, one mustn’t jump to conclusions about causation. Still, more data is always better than less.
With openness about health, we could do a better job connecting people who share conditions to get information and support and each other. I am on the board of Learning Ally, formerly Recording for the Blind and Dyslexic, and at our last meeting, I was struck by the barriers that stigmas put in the way of young people getting the organization’s help. I heard how getting our software on iPods has helped more kids use the service because they no longer have to carry around a special device that marks them as different — stigma. I heard a mother say that school officials warned her that her child would be labeled — stigma — if she got him appropriate services, but she said she’d eagerly embrace the label if it got her son the help he needed.
On my blog, I’ve been in a debate about the recommendation by a government panel that men shouldn’t be given the blood test for prostate cancer anymore because, statistically, it hasn’t been shown to save lives. That’s because medical science can’t yet distinguish between fast- and slow-growing prostate cancer. I say men should get the test. I say we should be talking openly about our prostates as women have fought to talk about breast cancer. More information and communication is always better than less.
The real question is what men choose to do when they find out — through a biopsy following the blood test — that they have cancer. Perhaps more men should choose what the doctors call watchful waiting over surgery. But, you see, the problem is that we don’t have *enough* data to make a good decision. I want to know, based on the largest possible population, how long it took prostate cancer to spread after it was found. Then I could decide how long to watch and wait. But I don’t have that information. So I chose to get the cancer out of me. I could make that choice only because I had the test. I had my own data. If I had the data of millions more men, I could make wiser decisions.
How could get get more data?
Step one is to encourage men to talk about their prostates — and, yes, sorry, their penises — so we disarm the stigma about it and get more men to be aware and get tested and share their experience.
Step two is to create the means to open up and share as much health information as possible so researchers, doctors, and hackers can dig into it and find correlations and patterns and questions worth pursuing, perhaps leading to answers.
When I talk about the principles of an open society in Public Parts, this is what I mean. Rather than reflexively declaring that sharing information about ourselves — our bodies as well as our thoughts and actions — is dangerous, we must stand back and ask what benefit could come from such data, now that we have better technological means to open it up, gather it, and analyze it.
Only then can we balance the benefits and risks and decide, as a society, how open we want to be, how open we should and need to be — and why. That is the kind of discussion about privacy and our changing norms I’d like to hear. Let’s not just talk about what can go wrong now but also what could go right.
: LATER: Some added links:
* Larry Smarr quantifying his own health.
* On being a medical data donor.
* Give us access to our own health data, online.
There seems to be little movements…..
There’s the http://www.quantifiedself.com community who is willing to track every step, meal, etc. notoriously, but also do some experiments and they believe in the actual factual numbers. Still a small movement, but shows that it is possible.
And then there are ‘datamining’ competitions that attract all different kind of students/scientists/etc. to real life problems with big data sets. http://www.kaggle.com is hosting the Heritage Health Price, where huge datasets are give to the datacrunching crowd for analysis.
What if we could combine those two? I wouldn’t actually care to share my measurements for science and better health for anyone. But I would definitely require that there’s a good one way anonimizing algorithm in between. I do (don’t ask me why) trust the datamining participants, but I don’t want my health record to be crawling the (digital) streets.
Oh.. and a happy 2012…
would provide their data to kaggle.com? Crowdsourcing 2.0?
Jeff:-
Glad to see you write about openness and discussion — but, before we can discuss these subjects we need to open the web for additional discussion about the web itself.
And by ignoring my direct approach to you, you are hindering the process of fixing the Public Computer/Internet.
Doug
I don’t spend time on “private” — and unsolicited — emails. I discuss in public when I find it worthwhile.
everything you say is good …
but there is one more reason we don’t speak so much about illness, or negative events ….
what we put our attention towards, grows.
innately we know that we often lie .. “i’m bad”, “life is against me” are examples.
so yes, be open, it has huge advantages, but do not dramatize, for that is destructive, egotistic, and ultimately counter-productive.
we are entering mystic territory
While I generally agree that more data is better, there is one area where some legislative restriction on the use of data may be necessary. If profiles of disease can be built based on location, diet, lifestyle, ethnic ancestry, occupation, etc., that may well lead to prevention, treatment or cures. But it also leads to a much more granular approach to risk analysis for insurers. Some of these factors, such as ancestry, cannot be changed. Just like limiting the ability of insurers to deny coverage on the basis of pre-existing conditions, we may need to limit the extent to which insurers can price insurance based on individual risk factors. Otherwise, people could find themselves unable to afford insurance due to risk factors that are beyond their control.
And Therein lies your problem — good luck!!!
reading about concentration camps you’ll notice that it’s been of vital importance for inmates not to show that they were sick otherwise they’d be eliminated. Maybe the public reaction to an individual’s illness shows the degree of kindness a society has.
Opening up about your illness might make society better.
I have often wondered why there is not more medical data made available and I would gladly make my data available if I could do so anonymously.
If the data were just data then I would offer up all kinds of stuff but when its tied to an identity then its dangerous.
In Mr. Jarvis’ post there are many “imagine if” situations that imply a world better then the one we live in. I would love to live in the world without judgement and stigma and while I strive to make choices that create a better world, one without stigma and judgement, I fall very short of achieving it though I still try.
Unfortunately we don’t live in a world where sharing our medical information freely is prudent. All people do not have the same level of education or knowledge. Not everyone knows you can’t contract epilepsy. This breads fear, its a protection mechanism.
A business owner may decide not to hire a person who is capable of doing the job in question based on the fact that the applicant has a terminal illness. In fact from a business perspective it would be a bad business decision to hire such a person. And yes this would probably be illegal to deny a person a job based on a sickness or disease, it would certainly be unethical by my standards but the world does not operate by my standards. And it would be hard to prove that the employer denied the applicant in question because of his or her condition without being a mind reader, there may have been a more qualified candidate it may be just shear luck that out of the 5 candidates you interviewed that day you chose the who was dressed the nicest and it wasn’t the one with the illness.
Yes I agree in a perfect world there would be no consequences to being free and open with your medical data. But we don’t live in a perfect world and while I may still try to make the world a better place I will still keep my medical information private since its in my best interest to do so.
js
I have been sharing my and some of my son’s health problems, illnesses, and treatments on facebook, in the hopes of helping others find new answers. I wasn’t able to formulate thoughts and communicate them clearly until alternative therapies returned that ability and function, after being assaulted and damaged by a neurotoxic, carcinogenic pesticide. I was dying and didn’t want what I knew to die with me. So I share with the world, my story and learning experiences.
I was a critical care RN for the majority of my 14 years of hospital nursing. My work settings were some of the best in the DC area, including the Washington Hospital Center and as a Naval Nurse Corps Officer at National Naval Medical Center, Bethesda. We did a number of experiments at both institutions, including some with NIH, only looking at Western medicine and its high-tech, costly and profitable solutions. There was no interest in prevention, of course, when there are such obscene profits at stake! Who cares about people being healthy, when there’s no money to be made that way!
During my career I saw and cared for just about every serious adult illness that exists. I wanted to do all I could to prevent them, as I have the genetics for all the illnesses in my family, and I swore I would never go through the treatments myself! I witnessed a lot of pain and suffering from both the diseases and the treatments.
Fortunately, I had a car accident and needed to let go of all I knew and believed if I was to recover. Thus began my journey into the world of alternative medicine and natural therapies. The philosophy of “First Do No Harm” is one of my core beliefs!
I was determined I would never have a liver transplant, and wanted to reverse the damages and illnesses I had suffered with and tried to ignore, since receiving military vaccines in 1980. My children and I have suffered many toxic damages, the worst being with the government pesticide experiment for West Nile prevention in 2004. I have been asking the gov’t for several years, to take care of those of us they injured. I seek treatments now illegal according to the FDA (so the profits of the medical cartel aren’t destroyed. They might be inexpensive, non-patentable cures!)
There are a wealth of medical discoveries among the damaged human guinea pigs of Mesa County, CO, and the practitioners that have helped those of us surviving, awaiting scientific observation and documentation from trustworthy, reputable institutions of valid, honest researchers. Not the type that would lie to their fellow citizens instead of obtaining informed consent.
Was the experiment on behalf of the Army and Operation Paperclip? Are they ultimately behind the spraying for the West Nile hoax? NYC was the first, then they took it across the rest of the country over the next few years, spraying as they went! They just tried to write our spraying “rescue” up as a valid study, “proving” spraying a pesticide stops West Nile infections in humans. (Oops! No valid medical journal takes studies with lies instead of informed consent, to discourage “research” like Hitler’s docs used to do! It’s really illegal, but it’s OK when the US gov’t does it, evidently!)
The Army would like to know what happens to people with low-level organophosphate (OP) exposure. Is that why I have been ignored from the President and everyone else? (Ken Salazar was one of the first I went to, seeking help in stopping the spraying. That can’t look good for him! At least former Rep. John Salazar was going to investigate, but he lost, so we the people did, too.) OP’s are implicated in causing Gulf War Syndrome. The Army also funds breast cancer research now, so do they want to prove the US DHHS caused the jump in breast cancer deaths seen here the year of spraying and the next two? If the pesticide they sprayed, with an ingredient shown to cause breast cancer in lab animals didn’t do it, what did?
BTW, free-radical damages from toxins like pesticides and heavy metals, play a key role in the development of heart disease and cancers. Heavy metals displace calcium and other mineral ions necessary for life and proper function. Pesticides like the one sprayed here and in NYC, interfere with the immune system’s ability to “police” viral and cancer cells. (Healthy, normal functioning immune systems are supposed to be constantly on the defensive, and “seek and destroy”. Interfere with that, and one is more likely to have unchecked cancer cell growth.) You and everyone else had serious toxic exposures with 9/11. You also had many citizens sprayed for West Nile in the years preceding that event. The damages of chemicals are cumulative, additive, and synergistic.
Fortunately, I have also been Blessed with finding answers, instead of just suffering and dying, as I was a year ago before adding new treatments. The death spiral has stopped, but I linger between life and death. I want to be CURED, and the only things I know I that might help, need to be available for ALL OF US (including the rest of the world), that want to be a human guinea pig for humanitarian research that is currently denied.
Why must people continue to be tortured by poisons and radiation, and mutilated by radical surgeries, as the only acceptable cures?! When I saw a patient with her nipple on her neck as a result of throat cancer and skin grafting (need help quitting smoking, anyone?!), I decided then I wouldn’t undergo mutilating cancer surgery, either! If cannabis oil helped cure a little boy who docs said was going to die, why can’t we have that immediately, readily, and widely available for everyone suffering?! Our governmental torture must stop on all fronts!
There are an increasing number of blogs where people are sharing their medical data: for example on her blog – But Doctor….I hate pink!
– Ann Silberman recently posted the content of the radiology report – http://www.butdoctorihatepink.com/2011/12/final-report.html – from her latest scan along with her comments. Good on her! I think the more willing people are to produce posts like this the more informed the rest of us will be. Once a critical mass of these data are available it is likely that more sophisticated software will be developed to help people query the information and try to make sense of it.
There is an incredibly misguided notion out there that most people want their medical information to be private. I don’t think it is true. If it were true, people wouldn’t be monitoring themselves, quantifying themselves, and keeping their own records.
When I heard about Xeni I was stunned, but the way she is handling it will give her access to the best information. When the Scobles child was diagnosed with autism spectrum disorder, he tweeted it from the doctor’s office, and got flooded with recommendation, sharing, and information.
For myself, I have long done what Larry Smarr does, and with every new tool I get better at it. I used 23andMe, and I’ve used the Fitbit, Jawbone, Withings scale, etc. My diet is tailored to the needs of my body, as determined by blood tests. I blogged about it when I went to the nutritionist and change it.
You don’t have to do it for very long to get a sense of who you are and what needs “optimizing.” I also take advantage of every test and screening I hear about, despite my primary care physician calling me “messhugganah.” I’m not crazy. I am in the know. I am often better at making diagnoses about me than my doctors are — at the very least I can function as their partner.
Mentoring at Rock Health tells me this fear of making health information public is all changing very fast, and the younger generation, of which I count myself a member, will do its own research. As my grandfather Bob Dylan once said, “the times, they are a’changing.”
Jeff,
I think the answer to question #1 is that people do not want to be seen as weak. Take myself, for example. I used to be strong like bull. No allergies, no medical conditions of any kind. Natural 20/20 vision (still have that, thankfully). Perfect teeth–never required braces.
Now? I’ve developed allergies to some plants and foods…some of which I know what to avoid, others I have no idea–my sinus just seizes up and that’s that–can’t breathe. Nothing I can do about this, really, except rely on medication and other things to cure what ails me. That’s weak. I rely on these things to help me breathe. Weak.
Take my grandpa. Wouldn’t move into a “home” because he wanted to live and die in his own home. Hated the idea of an old folks home, but also didn’t want to appear weak and dependent on others. He died of emphysema.
I think most of us just don’t want to be judged–or labeled with a stigma, if you will–and would just rather be treated as strong, healthy human beings instead of the weaklings that I believe most of us are. I’ve not talked to one person I can think of that has absolutely zero health problems at any point during life. Even my most healthiest of friends still has jock itch or athlete’s foot or back pain or who knows what else they haven’t shared with me.
Nevertheless, I do agree with you that while me knowing my friend has breast cancer really doesn’t help change the world, scientists and data miners and the like knowing about this kind of thing is incredibly important for the reasons you describe above.
I just wish there were a way to have your cake and eat it too. Be private about your health so you can preserve your outward appearance of strength and save face, but meanwhile contribute meaningful data to scientists so they can uncover trends, treatments and cures to the health problems we face today.
Well put.
> Some of these factors, such as ancestry, cannot be changed.
An existing person can’t change her ancestry, but we can decide to not have new existing people with any given ancestry.
Most people agree somewhat with the notion that they should have some control over things that they pay for.
> we may need to limit the extent to which insurers can price insurance based on individual risk factors.
That has consequences – folks who are lower-risk then try to avoid insurance.
I kept a blog diary of my detached retina a few years ago, and communicated with a number of people who had questions or wanted to share experience.:
http://athleticsenior.blogspot.com/search/label/retina
Being unable to access data can have lethal consequences and wastes huge time and money. Cheap, standards-based cloud-based storage could solves this, and shame on Google Health and the leadership of Google for abandoning this worthwhile goal. For those interested, skip to minute 40 of this video, where I discuss an example where I had CT and MRI data available on my iPhone that a neuro-radiolgist at NYU couldn’t access from their own internal system. The neuro-radiologist and the vendor of the cloud-based system I used discuss this. That’s minute 40 of this video: