Last December, Communication graduate student Brittany Fiore-Silfvast won a Doctoral Dissertation Research Grant from the National Science Foundation for her proposal, “The Informationalization of Healthcare: Shifting Subjectivities, Organizational Forms, and Ways of Knowing in the U.S. and India.” Last year, she traveled to India where she worked alongside an international non-governmental organization (NGO) and a local healthcare and research organization based in India.

Fiore-Silfvast spent time in three of the India-based organization’s rural clinics, which are far removed from the main roads and cities (due to privacy reasons, both the healthcare organization and the NGO cannot be named). Her work, so far, has consisted of conducting focus groups in cooperation with developers of the project devices and the NGO, as well as personal interviews with midwives from the Rajasthan clinics on home visits to determine how newly introduced technology will help with in-home healthcare.

The first project that Fiore-Silfvast is working on is mobile phone-based. “It’s an open source data collection platform customized for midwives to use in rural areas in Rajasthan, India,” she said. Women in India tend not to leave home for one month after delivering a child for cultural reasons. Post-natal care (PNC) programs offer home visits as a way for medical professionals to reach them at a time when they wouldn’t normally come into the clinic. The India-based organization also hopes to use the same data to survey population health and oversee compliance with their clinics’ healthcare practices.

Midwives usually document issues like anemia or low birth weight on paper form, but the new phone platform has reshaped the practice. The platform incorporates electronic forms, as well as clinical suggestions and educational videos to support the midwives’ counseling.

Fiore-Silfvast spent most of her time following the information flow on the platform, documenting what diagnoses were made and how many visits they conducted. “I was interested in how the communication around that information changed. When you move the data collection and interpretation onto the phone, how does that change the ways that info is interpreted? What can be done with that info, and where does it go after the patient-provider interaction?” The healthcare organization using the phone platform hopes to extend the life of the information by using it to evaluate a population’s health.

The other project Fiore-Silfvast is researching in India is the informationalization surrounding a non-invasive anemia screening device, which is still under development. “Currently, in rural areas of Rajasthan, anemia is a huge problem,” stated Fiore-Silfvast. “Nearly 90% of women have it there. Pregnant women are at particularly high risk.”

In the customary Sahli test for anemia, midwives draw blood from the patient, mix the sample with hydrochloric acid, and then incrementally add buffer to the mixed sample to measure hemoglobin density. The color of the patient’s buffered sample is compared to two other color extremes on the hemoglobin density spectrum. In the U.S. and many other parts of the world, normal hemoglobin density is 12-15 grams per deciliter (g/dL); in Rajasthan, normal is 9-10 g/dL.

“One issue is they have to draw blood. There’s a whole host of cultural reasons why that’s difficult,” warns Fiore-Silfvast. Medical professionals in India also consider the Sahli test to be subjective because doctors often disagree on the color of the sample, and thus hemoglobin density, after acid has been added.

The non-invasive device aims to change all of that. It consists of a sensor probe that fits on a patient’s finger and gives a reading of their hemoglobin density, thus eliminating the need to draw blood to screen for anemia. “I’m doing focus groups, group interviews, and getting feedback on this device. I think, ‘What would this device mean for these midwives to use on home visits?’” said Fiore-Silfvast. “On my first trip, I just saw the device developed and saw how it was conceived. In my second trip, I’m going to follow up on the implementation of the anemia tool.” Fiore-Silfvast gave her data to the device designers, who will use the midwives’ input to improve the device and then test it in the field.

Her ultimate goal is to tie all of her work into a third part of her proposal which focuses on informationalizing healthcare in Wenatchee, Washington. More specifically, she is studying how an in-home device called the Health Buddy is changing information collection and interpretation in rural Washington.

The Health Buddy aims to help high risk patients of chronic disease (particularly congestive heart failure, COPD, and diabetes) manage their condition. A case management program has even been built around the Health Buddy. If a patient has diabetes, they will answer questions on their Health Buddy for about 10 minutes a day. That information will be coded through certain algorithms and the case manager will have a screen on the other end that informs them of high risk behavior, thus allowing the case manager to intervene.

“Through these devices, you’re generating a lot of data about yourself,” said Fiore-Silfvast. “The questions in this project is, ‘What does that data mean, and to whom?’ What might be meaningful to the case manager is not necessarily meaningful to the doctor. The case manager is trying to build a relationship, while the doctor needs data that helps them act.”

As interesting as the mobile phone platforms and devices are, what Fiore-Silfvast finds most compelling are the constructing and deconstructing of information theories. “I’m really interested in how we design tech solutions for sociotechnical problems. There are so many projects that focus on tech as a solution to HR problems,” remarked Fiore-Silfvast. “What is so evident from my time is that case management is just as powerful, if not more powerful, of an innovation for the healthcare environment as a device. I wanted to look beyond the new technologies and look at how new forms of data and information reshape how we communicate and manage that information.”

Asked if technology alone should be considered a solution to health problems, she replied, “I think that’s too narrow. When you start to isolate the technology in these projects, you lose sight of what technology can actually enable, which is an occasion for other kinds of innovation.”

-By Evan Yang