Category Archives: Design

Behind Closed Doors

Guest post by Sanjana Puri

Every spring, thousands of high school seniors gripe, moan, and complain about the seemingly unfair process that is elite college admissions.  One complaint that stands out amongst them all: it’s done behind closed doors. Applications go in, acceptances and rejections come out, but nobody can see what happens inside.

But what happens when this door gets pulled open?

That’s what happened when a group of Stanford students asked the University in January for a copy of their admissions records.  According to the New York Times, the university was forced to comply, in accordance with a federal law that has been in place for years.  Students highlighted the 1974 Family Educational Rights and Privacy Act, which stipulates that students have a right to see their educational records.

Tina Fey in Admission

Tina Fey in Admission (2013)

As someone applying to medical school, and a fairly recent alumnus of the college admissions process, I can sympathize with those who want to know the why in decisions. During the process, I felt both nervous and vulnerable. My admission into the most elite colleges seemed distant, behind a wooden door of admissions officers picking apart my carefully crafted application.

Translate that same feeling to a patient in a doctor’s office.

Patients eagerly await the arrival of results from a screening or bloodwork.  When the doctor arrives, the diagnosis and treatment seem out of their control, perhaps instead behind the privacy of a blue curtain. Depending on the situation, it can be a nerve-wracking experience.

Curtain & Patient in Greys Anatomy

Curtain & Patient in Grey’s Anatomy 

However, Stanford students took control into their own hands, empowering themselves and others throughout the country to level the information playing field.  Many said the comments on their application records were frank, like they were never intended to be read. But honesty can facilitate quality of applicants, accountability of the process, and advice for the future.

It’s time for patients to take action.

Now more than ever, patients have the opportunity to take control of their health. In the digital age, patients can have access to a PHR, or personal health record, a collection of information (immunizations, allergies, medications, etc.) pertinent to a person’s health. While different from an Electronic Health Record, which is controlled by doctors, employers, and insurance companies, a PHR enables patients to share information with all care providers and manage their health in between patient visits.

Americans who have access to their health information through personal health records (PHRs) report that they know more about their health, ask more questions, and take better care of themselves than when their health information was less accessible to them in paper records, according to a ground-breaking study released by the California HealthCare Foundation (CHCF)in 2010. However, only a mere 7% of Americans had used a PHR.

Advocate for your health.  Ask your doctor if they provide the option for a personal health record, and if not, encourage them to do so in the future.

The doors are open for you.

Face Value: 3D Hollywood Animation Aids In Transplantation

The face is the only part of the human body that we cannot hide.  It reveals our innermost feelings; it communicates our deepest and darkest emotions; it is the index of our mind. It protects the organ which houses our special senses—our vision, our smell, our hearing, our taste, our speech. Put simply, the face is an integral part of our identity.

It stands to reason, then, that facial damage ends up damaging identity as well.

 

When the face has been destroyed through trauma or disease, surgeons must take into consideration both the form and function of the remaining tissue (lips, jaws, eyelids, nose, etc.). Of course, plenty of plastic and reconstructive surgical techniques are able to address any one of these facial components, but what happens if a patient is missing both a jaw and a nose? Or both lips and cheekbones?

 

In these instances, patients may be better off receiving transplanted tissue from a deceased donor. The world’s first partial face transplantation was performed in France in 2005 on a woman whose nose, lips, chin, and cheeks had been removed after she was bitten by her dog. The patient, Isabelle Dinoire, has made astronomical process since her surgery, and she reports being “very satisfied” with the results.

 

isabelle

 

Isabelle Dinoire, the world’s first facial transplantation patient, just after the operation and one year after.

Face transplantation became a reality in the United States in 2008, when surgeons at the Cleveland Clinic transplanted most of Connie Culp’s face after a gunshot wound from her husband left her without a nose, cheeks, eyes, and the roof of her mouth.

connie

 

Connie Culp, America’s first facial transplantation patient, just after the operation and one year  after. 

Although there is quite a bit of data to aid in reconstruction, it is fragmented and almost impossible to manipulate, according to Dr. Darren Smith at the University of Pittsburgh Medical Center. To help in planning surgery, plastic or plaster models are created for mock cadaveric dissections. But by combining medical imaging with the 3-D modeling software used to animated films, there is new hope for the field of reconstructive surgery.

 

Smith and Gorantla along with Dr. Joseph Losee have combined conventional medical imaging software with Maya, animation software used to create a 3-D model of patient’s head and neck anatomy. Due to this integration of softwares, researchers are able to better understand the damage to a patient’s craniofacial anatomy.

 

face transplant-1

 

The software provides detailed imagery of the patient’s bones, muscles, nerves, and vessels, and this ultimately allows physicians “to customize the procedure to the patient’s individual anatomy so that the donor tissue will fit like a puzzle piece onto the patient’s face.”

 

Exciting things are happening in the field of medical imaging, and it will be interesting to watch as various fields of medicine are impacted by developing technologies.

 

 

 

http://www.diagnosticimaging.com/articles/medical-imaging-and-3-d-hollywood-animation-combine-aid-face-transplants

 

When Social Media Promotes Self-Harm

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.

instagramIcon

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 Medical Education Fails: Reinventing Sex-Ed

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.

gender

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.

The Importance of Usability: Putting the Patient First

In addition to developing apps that allow patients to track their lifestyle habits—exercise, diet, sleep patterns, etc—mHealth is also promising in its potential to engage patients in their general health information. Specifically, in the information that is stored in hospital health records. A play on EHRs, Mana Health has developed “a patient portal solution that has been designed for today’s consumer.”

Mana Health is a New York startup that won the opportunity to design the patient portal for the New York eHealth Collaborative, a non-profit organization that works to improve health care for New Yorkers through the development and establishment of electronic health records. Mana Health recently designed an interface that facilitates the sharing of patient data around the state, not only between hospitals, but also from hospital-to-patient. The endeavor is unique because it is not contained in a single healthcare system, but rather will pull information from across the state and consolidate it in a user-friendly “patient portal” platform.

One of the best features of the program, at least in my opinion, is how user-friendly the interface appears to be. While existing electronic medical records (such as Epic) are filled with numbers and abbreviations, Mana Health’s platform is truly geared towards the patient and offers streamlined graphics that illustrate the patient’s relevant health information.

Screen Shot 2014-04-26 at 11.08.24 PMScreen Shot 2014-04-26 at 11.08.35 PM

Mana Health’s platform transforms the complex electronic health record into a personal health record that allows patients easy access to their information: “unlike the clunky PHRs of days past, they said they wanted something that a typical consumer would feel comfortable using.” Their concern for user-centered designs is something that all mHealth developers should strive to emulate. The liberal use of color-coded graphics is a simple way to increase the scope of users, especially to those who may have low health literacy and will serve to benefit from the image-based layout.

As mHealth advances, there are many issues that will continue to spring up. I have addressed several of these in past blog posts—addressing low health literacy, accessing hard-to-reach populations, funding mHealth endeavors—and the creation of user-friendly platforms is yet another point of serious consideration. mHealth is a direct product of creativity and innovation, and these driving forces should not stop at the development of the idea, but carry over into the details of its execution.

http://www.mhealthnews.com/news/new-patient-portals-bring-mobility-hix?page=0

http://mana-health.com

http://nyehealth.org/about-nyec/

Follow

Get every new post delivered to your Inbox

Join other followers: