Problems and Purpose
A research study conducted by the Greater Louisville Project found that residents may have as much as a 13-year gap in life expectancy related to economic and educational status. Those that live in lower economic communities usually experience more pollution therefore increasing the probability of asthma. It was estimated that Louisville had approximately 100,000 people suffering from asthma, about 15% of the adult population. Among other U.S. cities, Louisville ranked high for both poor air quality and allergens. Combine that with the fact that the city also exceeded federal smog standards and the amount of days this occurred tripled between 2005 and 2011, it is no wonder that people’s asthma was being triggered. When taking all of these concerns into consideration, Louisville was the perfect place to conduct an experiment to try and increase the quality of living and healthcare in Kentucky. The project allowed them to collect big data that could be analyzed to inform public policy decisions in regards to people's’ health. This takes away the subjectivity and gives lawmakers something concrete on which to base their decisions, something Louisville struggled with until now. The project also involved citizen participation which means that citizens were not only able to help themselves, but also had the opportunity to improve their neighborhoods and inform public policy.
Background History and Context
Asthma is a disease that affects the lungs and can make it difficult to breathe, causing symptoms such as wheezing, shortness of breath, chest tightness and coughing. Asthma attacks occur when a person is exposed to triggers, which vary from person to person. Triggers include things like pets, air pollution, mold, tobacco smoke, dust mites, physical exercise, and sickness. According to the Center for Disease Control, approximately 25.5 million people have been diagnosed with asthma since 2012, 8% of the adult population and 9.3% of children. It also resulted in 1.8 million visits to the ER and 14.2 million visits to a physician. In 2013, 3,630 deaths were documented as a result of Asthma.
Asthmapolis was developed by Dr. David Van Sickle and piloted in Louisville, Kentucky in 2012. Dr. Sickle had the idea to use GPS devices attached to emergency inhalers to understand asthma in the community and inform the local public health officials. Ted Smith became the Chief Innovation Officer of Louisville in July of 2011 and brought the idea of Asthmapolis to the city. “The Louisville Asthma Data Innovation Project is a public-private partnership between the city of Louisville, Asthmapolis and IBM, which is funding the initiative through its Smarter Cities Challenge”.
Organizing, Supporting, and Funding Entities
Asthmapolis, now called Propeller Health, is a company whose purpose is to improve asthma management for patients and healthcare professionals. They are considered to be the leading digital platform for respiratory health management. They utilize GPS devices attached to an asthma inhaler that allows them to gather data on when and where people needed to use their inhaler to treat their asthma. The Louisville project was initiated between Asthmapolis and IBM and the city of Louisville in 2012. Using a GPS device attached to participant's asthma inhalers allowed project organizers to gather data on when and where people used inhalers to treat asthma. In order to achieve the outcomes they were looking for, it was important that a variety of people were engaged in the project. The key people involved were the local public health officials, residents of Louisville, IBM and local physicians. By getting these people involved, the city could work together to improve the quality of health for their residents. It was critical to get the buy-in of the residents to have the data to analyze. IBM was instrumental in assisting the city to analyze the big data to inform the public officials so they could enact change. On a more personal level, physicians were able to provide personal and timely feedback to their patients to help them control their asthma. IBM selected Louisville to receive $400,000 in support to assist with this project.
Participant Recruitment and Selection
Asthmapolis involved four key participants including local public health officials, residents of Louisville, IBM and local physicians. Ted Smith, who was a local public health official, began working with the mayor when he arrived in July of 2011. He knew Dr. David Van Sickle and they worked together on the initial project. Ted was given $150,000 from the philanthropy department in Louisville for the pilot project. IBM saw the work they were doing and encouraged them to apply for the Smarter Cities grant which they were awarded. IBM was instrumental in assisting the city to analyze the big data to inform the public officials so they could enact change. The project initially recruited people with asthma on a voluntary basis. Enrollment included up to 500 participants and took place at 11 Walgreens locations across the city from July 2012 until November 2012. Louisville-area residents that met the following criteria were invited to participate in the study:
- Have a medical diagnosis of asthma and do not have an accompanying diagnosis of COPD or lung cancer
- Have a current prescription for an emergency inhaler (e.g., albuterol)
- Speak English
- Are age 5 or older
- Have Internet and/or email access to receive reports, including a compatible communication device (“smart phone”) such as an Android or iPhone
So far, Louisville has distributed about half of its sensors, through area Walgreens stores, as well as targeted community outreach. Since the initial pilot project, Louisville has moved to a blended recruitment approach, including voluntary participation of people identified through Facebook and ads, and proactive network recruitment by employees engaging with people.
Methods and Tools Used
Participants in the Asthmapolis project primarily participated through information and communications technology (ICT) but face-to-face interaction and deliberation were also used. The program was initially set up to provide 500 Louisville residents with new inhalers that worked with their mobile phones. The devices record the time and location every time the inhaler is used. It then sends the information to the company’s network. Once Asthmapolis has received the data, it removed all identifying information. IBM assisted Asthmapolis and Louisville public officials with the aquisition and analysis of data from an assortment of sources. The sources included data from traffic congestion, pollen levels, school absences, and air quality. This information was then used to compare the data received from the inhalers and identify areas of concern.
Interaction between participants was also face-to-face and, presumably, deliberative - at least among the tech team, doctors, and policy makers. Patients met with and received personalized recommendations based on the inhaler's data. Doctors also got to know the patient's medical history and could then give policy makers better recommendations on mitigating asthma-inducing environmental conditions. Astmapolis and IBM were also part of a collaborative and, presumably, deliberative negotiation process with public health and city officials to design and implement effective city-level interventions to improve air quality.
What Went On: Process, Interaction, and Participation
The residents with asthma used inhalers with GPS devices attached which automatically sent information including their location and time to IBM every time they used it. IBM analyzed this data traffic congestion, pollen levels, school absences, and air quality to compare the data received from the inhalers and identified areas of concern. Based on the information, patients received customized suggestions for asthma management based on their history. Also, they detected the associations with environment predictors of asthma and target areas. According to the target areas, they evaluated intervention scenarios to include reducing traffic density, the greening downtown, and reducing particulate matter. As a result of all the big data that Louisville collected, the government is looking to make decisions for the future health of the city. The first two interventions they are looking at are:
- The Green Heart Project - a $22 million project looking at green infrastructure to clean the air
- Transportation - They are partnering with Waze and looking at traffic congestion to see if any changes can be made.
During the implementation, public officials are making a concerted effort with an organization called Center for Neighborhoods. Once they have an intervention identified, they work with neighborhoods and neighborhood leaders that will be impacted by the policy change to get their input and feedback on the proposed policy change.
Influence, Outcomes, and Effects
Within the first 90 days of the project, asthma symptoms declined by 43%. As a result of having access to all the big data to analyze, the Louisville government is looking at additional interventions to improve the air quality and decrease asthma symptoms. At the community level, this project decreased the peak of athma. It also identified hotspots and high risk areas for intervention. Consequently, this project reduced 10% of small particulate pollution in the area, which resulted in a 27% reduction in amount of area at risk. Within the first 90 days of the project, asthma symptoms declined by 43%. This project also reduced 48% in the proportion of very poorly controlled asthma.7 On a more intimate level, physicians were able to provide personal and timely feedback to their patients to help them control their asthma. As a result, “Weekly email reports and access to online charts summarizing remote monitoring of inhaled bronchodilator frequency and location were associated with improved asthma control and a decline in day-to-day asthma symptoms."
Analysis and Lessons Learned
This project can be characterized as a new citizen engagement method that uses technological communication to foster interaction among citizens, health providers, public officials and companies. Before Asthmapolis, data only showed healthcare utilization and the data was retrospective based on patients' reports. Therefore, the data was limited in terms of both quality and quantity. Also, patients could not receive feedback outside of healthcare utilization. In contrast, after Asthmapolis, they could gather data everywhere prospectively. Thus, the quality and quantity of data improved so that it helped to make high spatial resolution. Furthermore, patients could get customized feedback in real time. The important point is that one technological device could encourage stakeholders at all levels to work together and reduce the risk of asthma in Louisville. That is, "Create and implement a bi-directional communications plan to interact with citizens, where messages are “pushed” and feedback is “pulled” on an ongoing basis. Communications should be targeted and deployed over a variety of online and offline channels.” In addition, "New citizen engagement methods will support continuing communication and promote behavioral change as new data provides new insights." The city is also committed to transparency by disseminating information, what Nabatchi and Leighninger (2015) consider the most basic building block for public participation.
A major focus of the city in this study was the collection of input and data from citizens through technology. This is often seen as a conventional method for participation, but can be argued that they did it in a non-conventional way by using geo-technology. The technology is what made this case so innovative. The current Air Louisville website states, “City leaders will use this information to make smarter decisions about changes that will reduce attacks for everyone”. This statement implies that government is making decisions without public input, beyond that of the data being received. We know from the deliberative aspects of Asthmapolis that this in not entirely true. Although Louisville is looking to involve citizens at the neighborhood level and sharing data through websites such as http://portal.louisvilleky.gov/service/data, there could be some work done to engage them at the policy level to enable both small-scale and working towards large-scale decision making within the community. For discussing and connecting between public official and citizens, the city had communicated with the Center for Neighborhood. They cooperatively shared information and feedback on the proposed policy changes. This activity would help them make strong relationships between public officials and citizens, which is associated with a prompt response for a bad situation, the high prevalence of chronic asthma. In comparison, in terms of the decision making process, there have been no public meetings in which citizens could participate to be involved in the policy making process. That is, citizens did not influence policy decisions in the project, other than the data they shared through their GPSs. To tackle this issue, the public officials may consider holding public meetings or committees to encourage citizens to participate in the policy making process and interact more effectively. However, Louisville has taken a step in the right direction by empowering and activating participation through local leaders and networks, seeking their input. Local leaders often have influence and can help win the community’s approval and support.
At the patient level, this project exceeds expectations. According to Nabatchi and Leighninger (2015), patient engagement and patient-centered care are two of the major trends emerging in health care. This project allows for both in a very meaningful way.Initially the process for selecting participants could be seen as having selection bias. The project screened out participants under the age of 5, those who didn’t speak English, and those who did not have access to email or Internet. In addition, the project relied on participants volunteering to participate based on advertisements they saw. This would have limited the participant pool. However, as stated earlier, they are now using a blended approach that will help engage people in their work-places. This will still limit those without jobs and insurance. There is also those who have trouble trusting the government. Several comments are posted in response to articles regarding this project citing that the GPS trackers are just a way for “Big Brother” to invade on citizen’s privacy. The more informed the public is, the less this type of criticism will resonate with others.
Although the majority of the interaction with the community was through data gathering, this case proves to be an innovative way to involve people of all backgrounds in the improvement of their community. By the citizen’s willingness to anonymously share the details of their chronic asthma condition, they are providing Louisville with critical in invaluable data that informs their government in important decisions that will ultimately enhance people’s lives in their city. The willingness of Louisville government to think outside the box and get creative will continue to benefit all citizens as their air quality improves and people become healthier.
Asthma Data Innovation Demonstration Project (ADID). (n.d.). Retrieved from https://clinicaltrials.gov/ct2/show/NCT02162576
National Center for Health Statistics. (n.d.). Retrieved from Center for Disease Control and Prevention: http://www.cdc.gov/nchs/fastats/asthma.htm
Smith, T. (2016, March 7). (A. Eells, Interviewer)
IBM, "IBM's' Smarter Cities Challenge: Louisville Summary report," 2012 https://www.smartercitieschallenge.org/assets/cities/louisville-united-s...
David Van Sickle, et al. “Remote Monitoring of Inhaled Bronchodilator Use and Weekly Feedback about Asthma Management: An Open-Group, Short-Term Pilot Study of the Impact on Asthma Control,“ PLOS ONE, February 27 2013http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0055335
Ted Smith, “Louisville Asthmapolis Project" http://www.healthy-ky.org/sites/default/files/9.%20FINAL%20Ted%20Smith.pdf
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Lead image: Health Data Consortium, https://goo.gl/8U4TLy