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.

My last blog entry posed a question that has yet to be explored: should patients be obligated to share themselves with their doctors via social media? That is, might physicians be able to use social media to learn more about their patients?

To answer this question, I present a scenario:

Susie, a twenty-three year old female, enters the ER with severe iron-deficiency anemia and a shockingly low hemoglobin count. She needs to be transfused right away, but Susie quickly and firmly refuses the transfusion because the idea of having someone else’s blood “freaks her out.” She stays in the hospital for three days when Dr. Smith notices a fresh wound on Susie’s left thigh that is becoming infected. Susie swears that it showed up on its own, but the wound looks like the result of self-mutilation.

Dr. Smith becomes increasingly worried that Susie’s low hemoglobin count is due to self-phlebotomy and that, because of her dramatic refusal of transfusion and her unclear and changing symptoms, she may have Münchausen syndrome.

Dr. Smith decides that, because Susie is being uncooperative and irrational, she will look at Susie’s Facebook page to retrieve honest information. After work, Dr. Smith scrolls through Susie’s pictures and sees photo after photo of blood bags, IVs, and hospitals, as well as statuses bragging about how many times she’s visited the ER that year.

In an attempt to uncover more information, Dr. Smith reads through Susie’s Twitter feed. Almost every tweet mentions a new diagnosis or medical problem.

Is it ethical for Dr. Smith to look at Susie’s Facebook page and Twitter feed to search for information that would confirm her hypothesis? What if the discovered information would alter the course of Susie’s treatment? Would the information retrieved from the social media sites go into Susie’s EMR? Would Susie ever find out?

Social media is taking medicine to new heights, but it’s leaving us with many unanswered questions as well. Platforms like Facebook and Twitter are opening new avenues of communication between patients and physicians, but in doing so, may cause breaches of patient autonomy and confidentiality.

The positive repercussions of using social media in medicine are many, but be warned: we must proceed with caution.

Doctors are becoming more than a white coat and a stethoscope. They are becoming bloggers and photographers; rappers and painters; designers and musicians. Quite simply, doctors are becoming people. Real, true people.

To what do we owe this drastic change of public image?

For the most part, we can attribute it to social media.

We all know that physicians are beginning to utilize social media platforms—such as Twitter, Facebook, Instagram, and LinkedIn—as avenues for effective communication with patients. They are realizing that, by breaking down communicative barriers, they are able to engage patients in a new way.

The way I see it, there are five reasons why physicians should embrace social media:

1. It lets you meet the patients where they are.
2. It increases physician transparency in the medical community.
3. It makes for engaging interactions with colleagues, and therefore helps spread important health information.
4. It’s a way to create and curate medical narratives.
5. It’s not mandated (for the most part).

But, as social media plays a bigger and bigger role in the lives of patients, physicians very well may be obligated to share themselves with patients via social media. It allows patients to get to know their doctors outside the four walls of the hospital and, therefore, keeps them better informed. As we know, informed medical decision-making is a prerequisite for all effective medicine.

Social media may be used as an avenue for storytelling—something that, conveniently, is the foundation of our Artificial Hearts group problem. Cardiologists have made use of social media in a rather unique way: as a tool for education of clinicians, physicians, nurses, and medical students. Rather than embracing patient-driven social media, the field of cardiology is embracing physician-driven social media.

Blogs and social networks dedicated exclusively to cardiology are allowing physicians to distribute, share, and comment on medical content such as images, scientific abstracts, and summaries of clinical trials. One such network is CardioSource.org, founded by the American College of Cardiology

CardioSource.org is an organizational website that has a private social network for users in which issues important to cardiology are discussed. The blog’s content is majority member-sourced, and the members and readers both are predominantly heart-centered medical professionals. In this way, the platform fosters a vivid culture of conversation, curiosity, and compassion.

The ACC has recently expanded CardioSource to LinkedIn, Facebook, and Twitter, and hopes to continue growing for decades to come.

http://www.cardiosource.org/acc.aspx