De-tangling medical data fragmentation

Resilience: We realize that success is not a path that is foreign of failure – and that is fine. The strength to keep trying and forging forward is what is important

Compassion: We recognize that in order to thrive, others must be part of the equation. As a result, caring for others and their wellbeing is a paramount consideration.

Healthy Mindfulness: A well maintained temple attracts believers and incentivizes them to perform their best. We each inhabit our own unique temples- our bodies- and treat them as such. As such, we value mental and physical health.

Plural Awareness: Every person is an intrinsically unique individual with unique needs and preferences, stemming from a unique mesh of backgrounds and experiences. We champion respectful awareness of others and are excited to learn more about each other.

Stalwart Enthusiasm: We each have the power to bring about change if we work hard and believe in our goals. As such, we remember this every day and motivate ourselves to continue striving and refining our best selves.

For many patients, it is frustrating to navigate between health providers and treatment centers with medical record information fragmented in different places. For health providers, precious time and effort is lost obtaining or even re-doing already created medical data, such as X-rays. The goal of a convening would be to fuel change and minimize the frustration in medical data fragmentation.

As such, I propose a three-day hackathon, centered on developing technologies that tackle the medical record fragmentation among health providers. Health insurance providers and large hospital and healthcare institutions will be invited to the hackathon. They will be tasked with presenting problems in their medical record infrastructure that could be serving as potential barriers to streamlining patient medical data. In addition, a diverse group of people who have first-hand accounts of their experiences with medical data fragmentation will be invited to present their frustrations and specific complaints (e.g A woman who broke her arm and has had to wait two months in getting follow-up treatment since her out-of-state MRI imaging center requires in person authorizations to send her images to another health institution).

Finally, the “hackers” will be all those with the skills and drive to tackle this challenge. Technologists, aspiring health care providers, managers, and sociologists should come together to build solutions. As a venue, I believe a medical school’s research or public health policy center would be an ideal fit and context for inspiration. In turn, the values we defined above will be used as the basis of building solutions to the medical data fragmentation. An ideal solution is one that promotes resilience and a steadfast recovery for a patient, always paying careful attention to the unique needs of each person in tackling their treatments. Representatives from large healthcare providers across the country will serve as judges for the hackathon, since they have the decision-making power to create opportunities to incorporate the solutions developed in the hackathon.

Responding to Natural Disasters in the US, Liberating Patient’s Own Access to Medical Data, Stop the Straws

Responding to Natural Disasters in the US

“FEMA leadership acknowledged that the Agency could have better anticipated that the severity of hurricanes Irma and Maria would cause long-term, significant damage to [Puerto Rico]’s infrastructure
-FEMA 2017 after-action evaluation report

In the aftermath of Hurricane María, Puerto Rico fell into a literal and metaphorical abyss of darkness as 100% of the electric grid went offline immediately after the storm. Cellphone towers went offline and millions were unable to contact their loved ones, many times for weeks. Access to clean water and food was cut off for thousands. Many agencies were severely unprepared at different levels of public management, with one of the most salient being the Federal Emergency Management Agency (FEMA) that even admitted that it was unprepared for the scale of the disaster. Much more could have been done, such as the restocking of emergency food and water warehouses, the delivery of energy generators, and public

With climate change, natural disasters are bound to become more common. We cannot allow lack of preparation before them become the norm or have political actors beget its lack thereof.

Law: Continue having FEMA as an independent organization of the government. This will (hopefully) prevent the politicization of responses towards individual regions of the US. Moreover, illegalize the inflation of prices of essential resources such as power generators in times of crisis.

Norms: Retain the public memory of the aftermath of unwisely managed disasters in the public domain. Media outlets have done an excellent job of this by illustrating the narratives of many people directly affected by large-scale natural disasters. Make human perception of such heartfelt narratives more welcome and thus more naturally received.

Market: Provide government subsidies to essential supplies in times of preparation and response to natural disasters.

Code: Develop urban planning simulation software that models the effects of natural disasters on cities and larger regions. Make the results of these simulated stress tests play an important role in emergency planning by government and non-government agencies alike.


Liberating Patient’s Own Access to Medical Data

When I sprained my ankle badly right before college, I had to take a number of MRIs, X-Rays, and physical evaluations to coordinate treatment. When the medical practitioner I was going to went for vacation, closed, or when I simply did not enjoy them, I had to seek a new person to see. With each new doctor or physical therapist that I encountered, I basically had to start from zero and re-explain my situation and treatment journey. At times, I would also have to repeat or reproduce MRIs of my treatment area. As a result, I was responsible for keeping a log of all my treatments and would be frustrated when there was something I forgot , did not ask for a copy of, or did not have immediate access to. Why is it hard for patients to see their own medical data?

Through this personal experience, I have noticed that much of medical record data is isolated within medical systems and hard to for patients themselves to collect and have at hand for subsequent medical visits.

Law: Amend the HIPAA law or complement it to require health providers to make access to patient data and test results immediately available for patients at the same time as the provider gains access.

Norms: Have healthcare providers print out evaluations and test results to give to patients at the conclusion of each visit. Essentially, make the act of the patient receiving a record of their evaluation as the last milestone in the process of visiting of a healthcare provider.

Market: Have your health data be tied to your healthcare provider. As a result, healthcare providers will have their patient data delivery systems as marketable selling points to potential consumers.

Code: Standardize a database system for storing medical records of which patients have easy, clear access to. For the sake of slapping this buzzword in, blockchain-ify medical record systems on online platforms.


Stop the Straws

“On July 26, the Walt Disney Company announced that it would eliminate single-use plastic straws and stirrers in all its locations by mid-2019 as part of its “journey of environmental stewardship.” Disney also plans to reduce other plastic products in its hotels and cruise ships as well as plastic shopping bags and styrofoam cups.”

“Starbucks made a similar announcement earlier this month, saying it would transition to a new lid for cold drinks that many have likened to an “adult sippy cup.”

-Vox, “Why Starbucks, Disney, and Tom Brady are all shunning plastic straws”

The waste generated by one time use plastic straws can be feasibly mitigated. In most cases, one-time plastic straws are not necessary tools for liquid consumption and can be easily obviated. There is traction in the movement of banning the usage of such straws, which we can take advantage of to effectively extirpate a sizeable human contribution to waste generation.

Law: Create laws that prevent or tax the sale and distribution of straws.

Norms: Make using straws be views as uncool within society. Word of mouth convincing has proven to be especially strong and is what convinced me to stop using straws. Public awareness campaigns through television or physical postering within organizations come to mind.

Market: Have restaurants and eating establishments that do not distribute straws make this as an apparent positive to customers. Restaurants that market themselves as non-straw using will be viewed as conscientious and trendy.

Code: Re-engineer the design of one-use cups to not include straw holes. Instead of straw holes, make cups have more grooved sides for comfortable, strawless drinking.

Why do people prefer to hide their assistive technologies?

Last fall, I took MIT, 6.811: Principles and Practices of Assistive Technology. In one of the guest lectures, a man that used a joystick-controlled wheelchair for mobility began asking the class if he was normal. Whether it be due to fear of pointing out a disability or due to morning inertia, a deafening silence followed for a good twenty seconds. The man then replied his own question by saying that no one is really “normal”. He followed by pointing out that we all have unique physical and mental abilities on par with their own strengths and weaknesses. Throughout the rest of his presentation, he exposed his viewpoint and guided us towards a conclusion of a goal of assistive technology: helps those with disabilities feel more ‘normal’ and less ‘different’ in their daily lives.

With this in mind, I continued to develop the assistive technology for the client we had been assigned to in our team- let’s call him Alexis for convenience. Alexis undergoes periods of communicative inability (cannot speak or write well) due to a combination of PTSD and aphasia related episodes that he cannot predict. These periods are frustrating to Alexis, since if severe, he cannot ask for help easily and, if mild, cannot relieve bystanders offering help. To help mitigate this “difference”, my team and I sought to create an iOS application that helped Alexis communicate to others while he was experiencing the periods of expressive difficulty.

In the process of creating the app, my team and I made multiple considerations to minimize how “different” Alexis would feel using the app. A paramount consideration that Alexis underscored was that he wanted the app to be discreet. This request demanded a reflection on the taboo society had towards assistive technologies. Why do people want to avoid being noticed using a wheelchair, a hearing aid, or a back-straightening brace? Being ‘different’ is frowned upon and many people do not want others to notice that they deviate from a norm of physical ability. For this reason, many hearing aid holsters are colored to match the color of their user’s hair color and adult teeth braces colored white. Yet there are exceptions to this trend. Children and teen’s teeth braces and casts are typically bright colored, potentially so they come to embody a more cheerful and youthful aura – something that is not always replicated in the adult versions of these. Should assistive technologies be hidden or more appealingly apparent?

In the end, we designed an iOS app for Erica that upheld her priority of discretion. We called the app “iNotify” and gave it an innocuous purple app icon. Her requested functionalities were also delivered, with an easy to navigate user interface. When we delivered the app to her, she was very happy. This was very fulfilling and the most satisfying takeaway from the class. Nonetheless, the importance of being aware of society’s perceptions towards assistive technology solutions also remained very clear in my mind.

Becoming more aware

Hi all! I’m William and I just graduated from my undergrad at MIT and am now doing the one year Master’s in Engineering program in the Electrical Engineering and Computer Science department. Although I do enjoy technology and the sciences, I am also really into the social sciences and analyzing human behavior. I am currently conducting research at the MIT Laboratory for Information and Decision Systems (LIDS) into exploring how we can quantify the willingness of electric vehicles owners to enroll in smart charging programs for their cars.

I have always been a tech enthusiast- I am an avid reader of and occasionally visit for leisure. I decided to take this class because I am interested in becoming more aware of how technology can negative effects in people’s lives and how to best avoid these. I want to take the class so I can become a more aware person in this respect. In addition, I reviewed the topics of discussion of the class, all of which seem very interesting. I also hope to learn from the experiences of the other students in the class, which all seem to hail from unique and very interesting roots.