Map: Midtown or Cass Corridor? Responses from the streets of Detroit

DETROITography

midcassDuring the Data, Mapping, and Research Justice workshop offered in August, participants conducted their own data collection based on shared research questions about the Cass Corridor. One question in particular that was brought up was what different people called the area: Cass Corridor or Midtown.

In all 30 people were rapidly interviewed along Cass Avenue, 2nd, and Third Street. Sometimes the workshop participants’ data collection clipboards made people wary, but often the clipboards invited more questions making it easy to engage people on the street, at restaurants, and waiting for the bus. The participants didn’t make it further than Peterboro Street due to time limits in the data collection.

Cass Corridor11
Both3
Midtown16

Midtown was the more commonly referenced placename, but overall the data gave a fairly even representation of the area. If anything the responses collected from people shows the well documented debate over…

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Implications for HIPAA & Health Practitioners under the new Google Privacy Policy

Much worry, fear, and writing has already come out about Google’s new catch-all privacy policy. I for one am not surprised that they have finally created one privacy policy for their entire suite of services. Honestly, I had already assumed that Google was sharing information across its platforms about me. The one idea that really stood out to me in Google’s new privacy policy is that items in your Gmail and Google Voice would no longer be technically private. Working in a clinical research setting at a university-based School of Medicine with clients who are ensured confidentiality, I am worried. Isn’t Google violating HIPAA in some cases by sharing this information that we believe to be private?

Google and HIPAA

I am not the first to write about Google’s new privacy policy in relation to HIPAA (Health Insurance Portability and Accountability Act). The most important piece in understanding Google’s policy in regards to HIPAA is that Google says that it is not bound by HIPAA.

“Unlike a doctor or health plan, Google Health is not regulated by the Health Insurance Portability and Accountability Act (HIPAA), a federal law that establishes data confidentiality standards for patient health information.” (via Google)

This is unfortunately true. If you visit the Health and Human Services (HHS) website those bound by HIPAA are health care providers, health plans, and health care clearing houses. Google is none of these entities, so therefore it gets by. There is no way that any court of law would hold Google accountable in a HIPAA related case. Google is a private company that offers free services to users. By using their services, you don’t necessarily have the rights to control what happens to the services.

“if you’re not paying for something, you’re not the customer; you’re the product being sold” (via lifehacker.com)

Implications for Individuals

Many, including Congress, have come out against Google’s new privacy policy and especially as it relates to HIPAA and health information. Representative Mary Bono Mack worries that Google could track sensitive health information.

“[…] say you do a Google search for cervical cancer and you forget to sign out. Are you being tracked across all of the other products, and if so, that’s a violation of HIPPA. We’ve gone to great lengths in our society to protect people’s medical information. That question was raised.”

Google’s response is that those individuals can use Google services, like Google Search, without having to log in to their account. However, if you are also a Gmail user and maybe you email with your doctor’s office then Google has that information more directly linked to your personal data. Does Google violate HIPAA in that case? No, because they say (to paraphrase), ‘you don’t want us to track you, then don’t login.’

For individuals, the solution is to diversify online services or stop using Google. If you don’t want your information tracked and collected by one entity start using a different email service, use Word instead of Google Docs, and if you don’t want information linked to your specific Google account, don’t login and search for everything you want to know about. That isn’t to say that other companies don’t also track and collect our data, but at least it won’t all be in one place. The hard part is that Google is good at what it does and for many, myself included, it will be hard to let go of the ease of Google services.

Implications for Health Practitioners

For Practitioners the story is more convoluted. I work for a clinical research grant where clients are ensured of the confidentiality of their information, however I am a Google user; a dedicated citizen of the Google Nation. I love their services and the ease of connecting the information that I want to use. As a result I use Gmail to communication on sensitive client matters with my Supervisors and I use Google Voice to talk and text with the clients. With the new Google privacy policy, all this information fair game for them to index and share across their platforms.

Based on the correspondence between Google and Congress as well as their stated policy that they aren’t bound by HIPAA, the responsibility falls on the shoulders of the health practitioners. In our clinical research program every client gets a number to ensure the confidentiality of their data. I use client numbers with everything that I do on Gmail and Google Voice, but sometimes background information about clients is sent to my Gmail that could reveal their identities.

Recently the School of Medicine where I am working hosted a workshop for researchers to benefit from Google tools, such as Google Docs. I emailed the individual in charge of the workshop to ask how Google’s new privacy policy might affect the way researchers use Google services. The individual seemed to be less concerned than I and said she understood it as a, “take it or leave it” policy. If you are a researcher dealing with private health information and bound by HIPAA, then there are serious implications for using Google tools for your research project. Google may state that it is dedicated to the privacy between sender and recipient, but that doesn’t mean that your data isn’t fair game for Google to catalog and use for their own purposes.

The solution for practitioners is: Don’t use Google services or share confidential information within Google services because you have no way of ensuring confidentiality.

the limits of human research

*Please note, the names and details of program participants have been changed to ensure anonymity.

After working with one of my first families, we’ll call the teen Larry, I began to feel limited by the research aspect of my current program. Since it is a research program testing various protocols for successful weight loss, my options and actions were often limited in what I could or could not do to help the family. At the time Larry was the heaviest teen in the program. I remember he was late for our first session at his house because he had missed the bus. I saw him walking down the street and knew immediately that he was who I was waiting for. Larry had knee and ankle problems as well as hypertension at age 15. At the time he was the heaviest teen in the whole program.

I built a strong rapport with the family and really enjoyed going to their house twice a week to work with them. Larry‘s weight fluctuated often, spiking and dropping dramatically from week-to-week. The family often attributed it to the medications that he was taking that cause him to retain water. However, over the first half of the 6 month program, Larry had lost about 20 lbs. from his starting weight. His Mom reported losing about 25 lbs. from participating and helping Larry during the program. She no longer needed to regularly wear oxygen and could walk more often than she was previously able.

In the last two months, Larry began to gain the weight back. Since his weight fluctuated so much it was hard to tell if he was really gaining a significant amount or if it was just related to the medications. By the final session of the 6 month program Larry had returned to his starting weight. His weight loss is considered significant and for him to gain it back is a red flag for larger problems. Research shows that when lost weight is gained back quickly it is much more difficult to lose again. His Mom was worried, he was confused, and I was unsure what to do. I gave the family additional information about other programs that Larry could participate in, but focused on affirming the skills that they had learned and the successes they had over the last 6 months.

It was during the following couple of weeks, which turned into months, that I really began dissecting Larry‘s dilemma. He was a very bright student, had some nice friends who helped him be active, and a very caring mother and grandmother. He took on more responsibility than most because his Mom wasn’t very mobile and yet he was unable to maintain his success in the program. I began to think back to other issues that the family dealt with during the program. The major one that jumped right out for me was their access to food. Larry and his Mom were getting food assistance and usually shopped once a month when the Grandmother could drive them to Meijer, which was located in another city. The family mostly ate frozen dinners that Larry could heat up in the microwave.

Beyond Larry and his family’s motivations, their social and economic situation became their largest barrier. Since they couldn’t afford to purchase healthier foods because they would go bad before the month ended, they were somewhat stuck to buy foods that were cheap and could be frozen. Their lack of money to be able to be more financially stable affected their food security in a similar way. Larry also reported eating a lot more at the beginning of the month. This is common among families using food assistance. One study found

“[…] a corresponding decrease of 10 to 15 percent in food consumption over the course of the month, suggesting some recipients may eat well for the first couple weeks after they’ve shopped and then run low on food near month’s end. This kind of ‘binge–starvation’ cycle has been linked to changes in metabolism, insulin resistance and, ultimately, increases in BMI.” (2004)

Larry‘s Mom would often report that he had eaten all of some food after they returned from the grocery store. Further research has identified connections between obesity and food stamps. The research found that the majority of food assistance receipts went shopping once a month, right after the food assistance amount is credited.

“Obesity cannot be totally pinned on food stamps,” says Jay Zagorsky, a research scientist at The Ohio State University’s Center for Human Resource Research and lead author of the study, “but it certainly is related to how the program is structured.”

In this situation, regardless of how committed the family was to weight loss and helping Larry manage his obesity, they were economically stuck in a cyclical nutrition pattern that would negatively affect his weight no matter his level of motivation. Socio-economic factors will win out over motivations every time, no matter the intentions. This is where human research is limited because the cause for failure is not pegged on the systematic inequality related to racial minorities and food assistance programs, but rather it is placed on Larry and his family for being unable to keep up with the program guidelines.

I keep reminding myself that this research will be applied to other programs in the future. Those programs will be able to replicate tactics that were most helpful and hopefully help even more adolescents in programs with more room to address multiple issues: medical, social, and economic.