Medical Futures Lab

In this digital age, more and more patients are utilizing social media to communicate and empathize with each other. Generally speaking, this is regarded as a healthy practice. It promotes patient autonomy; it empowers patients to take control of their disease; and it allows for collaborative exchange of coping strategies.

But what happens when this communication is counterproductive? What happens when collaborative online communication becomes a threat to patients’ health?

This question was left untouched until very recently, when word got out that pro-suicidal images are circulating through Instagram—the popular picture-based social media platform with over 80 million users. Although the founders of Instagram have taken a firm stance against the promotion and glorification of self-harm, a recent study uncovered heaps of images showing bleeding cuts, active cutting, pill overdose, and actual methods of suicide.

More than a quarter of the images found in the study have a pro-self-harm theme, and none of these images mentions the use of any mental health resources. Furthermore, only 5% of the images demonstrate any glimmer of hope. The majority of the images are laden with depressive content, and virtually none of them promote psychiatric intervention.

These findings are alarming for a number of reasons, but chiefly because they contradict the goals of the e-patient movement. According to e-patients.net, participatory medicine is a “model of cooperative health care that seeks to achieve active involvement by patients, professionals, caregivers, and others across the continuum of care.” It is an ethical approach to care that also holds promise to improve outcomes, reduce medical error, and increase patient satisfaction.

Instagram, a platform that is frequently used by e-patients to promote healthy lifestyle choices, may actually be promoting content with suicidal themes. Whenever an Instagram user posts a photo with the hashtag “ #suicide,” a message appears on the screen that directs the user to various resources for suicide prevention. In theory, this is an excellent solution; but in practice, not so much.

One would imagine that the people posting images of their own suicide attempts are already in a very vulnerable place. When they are promoting content with hastags such as #iwanttodie and #lifeisover, the brief message on suicide prevention only serves to magnify their feelings of inadequacy and isolation.

Dr. Arshya Vahabzadeh, a resident physician in child and adolescent psychiatry at Massachusetts General Hospital, commented on the medical implications of his findings: “A lot of our patients engage with social media.,” he says, “and they often describe incidents of bullying or difficult interactions they’ve had with their peers.”

What a site like Instagram allows these patients to do, though, is validate their depressive feelings and suicidal thoughts by reaching out to other patients on the verge of suicide. The conversation that ensues is not one of encouragement and praise; it is one of injury and contempt.

This study shows us that, although social media can serve as a beneficial tool for patient-to patient communication, it can also endorse and even encourage harmful acts such such as self-mutilation. Moving forward, we must engage with social media platforms to ensure that issues such as these do not go unnoticed. It’s important to proceed with caution. We must use this as an opportunity to educate users of social media on the severity of suicidal content.

When a baby is born intersex, many physicians find it appropriate to assign a sex through surgical intervention. Advocates of early genital surgery suggest that, if normalization surgery is done at birth or shortly thereafter, the intersexed child will be capable of developing a gender identity that echoes the surgically assigned gender, therefore decreasing psychological trauma in the patient. However, with the advent of marriage equality in many states, the intersex community has begun to develop a collective voice—a voice that is challenging the ethical permissibility of normalizing surgeries at birth and shedding light on its destructive potential.

It all comes down to the conception of normality: normal genitalia, normal sexual anatomy, normal sexual desire—these arbitrary expectations presume that there is a correct way to be male or female, and, on the flip side of the coin, that there is an incorrect way to be male or female. This notion of ‘normality’ complicates and obscures ethical boundaries—boundaries that are drawn by the scalpels of clinicians who have not received adequate education on the psychosocial implications of intersexuality.

Because physicians are not properly trained to treat intersexuals, there is no common understanding amongst health care providers of what exactly is meant by the word ‘intersex.’ Is there a point at which a male becomes a female, anatomically speaking?  If sexuality exists on a spectrum, how can we fairly decide the point at which genital ambiguity becomes too ambiguous?

What we see here is a sad truth: the terms ‘female’ and ‘male’ do not describe what is anatomical; rather, they describe that which is designated first by medical professionals, and second by the sociocultural forces that impress importance to a social fabrication which is viewed instead as a social authenticity. These forces serve only to alienate intersexed children and make them feel inadequate, undeserving, and monstrous.

It is for this reason that adult members of the intersex community have begun sharing their narratives. Adults living with intersex often assert that good intentions are inadequate reasons to maintain a practice that has shown itself unethical and unscientific. Many of these adults were not told of their normalizing surgeries, so they grew up feeling abandoned and alone. Others suffered severe psychological damage when they grew up to identify with the sex not assigned to them at birth. Good physicians take the whole patient into account when developing a treatment plan, but these narratives often mention a general lack of appreciation for the psychosocial implications of an intersex diagnosis. Many intersexed adults claim that physicians are insensitive, so—rather than providing families with resources and options—they encourage surgical normalization simply because it’s easier than dealing with a patient’s psychological trauma.

I believe that, with the proper educational tools, intersexed persons will receive healthcare that is ethically right and medically appropriate. As it stands, there are no guidelines to which physicians can refer when treating intersexed patients. There is no standard of care, and there certainly isn’t a course in medical school devoted to teaching future physicians how to empathize with an intersexed patient. Therefore, I propose six guidelines that—when incorporated into medical education—will give physicians the proper tools to engage in ethical, inclusive, non-discriminatory healthcare:

1. Intersexed children should be treated in a supportive, honest, and shame-free manner. They should be awarded full disclosure of all medical information, even if the physician is afraid that it would harm the child.
2. Psychological help should be readily available for intersexed children and the families of intersexed children. The obstetrician who delivers the intersexed child should refer the family to a psychologist who specializes in counseling LGBT youth.
3. Care providers should connect intersexed children and adults to avenues of peer support outside of the clinical setting. These include, but are not limited to, parent support groups, intersex support groups, and organizations that advocate for intersex equality.
4. Intersexed newborns should be given a gender assignment rather than a sex assignment.
5. The only surgeries that should be performed at birth are those that are necessary to maintain the child’s physical health.

The Gender Expansion Project is a non-profit advocacy group that works to promote gender inclusive education and awareness. http://genderexpansionproject.org/gep-history/ 

We are observing the birth of a global movement toward recognition of the ethical treatment of intersexed persons, but the fight for equality is far from over. For America to walk in stride with countries such as Switzerland, Australia, and Germany—all of which have passed laws to ensure the ethical treatment of intersexuals—we must address our semi-flawed system of medical education. Physicians have a responsibility to provide ethical treatment to all persons regardless of race, class, gender, and sex. Therefore, medical schools have a responsibility to better educate their future physicians so that the next generation of healthcare providers will be better equipped to face the challenges associated with the intersex community.

Now that our class is coming to a close, and given the amazing presentations and responses at our final critique last night, I thought this article in the Boston Globe was particularly appropriate.

Entrepreneural spirit just a start to “disrupt” health care – http://www.bostonglobe.com/business/2014/04/25/more-than-entrepreneurial-eagerness-needed-disrupt-health-care/POSS7fv6mBZQPGfhojuO7I/story.html

The article talks about the recent boom in hackathons, accelerators, and showcases specifically relating to health and medicine. There are tons of new startups and products that are coming out with the potential to change medicine, but they are all running into the same problem.

Once you’ve built an app, or built a device, in order to validate it you need to do some sort of pilot study. But it turns out, health startups are finding it extremely hard to find doctors and hospitals willing to work with them on a pilot-study.

The reason isn’t that doctors don’t want change, but it’s because they are already extremely busy people. In almost every field there are dozens of apps claiming and trying to do the same thing. So in an extremely limited time resources setting it becomes very hard for doctors to decide whose product they should pilot.

Not only that but hospital systems are extremely bureaucratic, institutional review board approvals can be hard to come by, and clinical trials can often costs startups easily between 50 – 100k!

All of that made me realize how lucky we are in our medicine in media class to have problem owners who are so invested in the products and teams. We don’t have to struggle to find a physician partner, because we already have an in-built one.

Creating a medical product is far from an easy pathway, but since all of us are lucky to have one of the biggest obstacles in our path cleared, I hope to see several of our innovations in the real world in the near future.