This post is the third in a five-part series on disparities and digital health, including Part 1: Measuring What You Want to Manage, and Part 2: Navigating the Digital Divide. It is cross-posted on the HIMSS blog.
The focus of this post is designing for your population’s needs. Sounds obvious, right? Yet many people don’t employ a user-centered design approach, partly because it can require a lot of time and other resources. If you don’t make the investment up front, however, you may end up missing the mark in the longer term.
To really understand your population’s needs, you have to ask people – or better yet, observe them and ask them. What obstacles get between them and better health? Many challenges may have little to do with the traditional healthcare system. For instance, one of the biggest predictors of success in recovery from hip replacement surgery is whether the patient has food in his or her refrigerator upon discharge from the hospital.
So step one is to learn directly from the population you’re working with. In addition, keep in mind a couple of challenges that are fairly common among a wide range of underserved populations, including compiling fragmented, incomplete health records, and making data accessible for people with a wide range of disabilities.
Compiling Fragmented, Incomplete Health Records
While the average American goes to the doctor about four times a year, people with the most health needs tend to have more encounters with the health system. In a year, the average Medicare patient visits two primary care physicians, four different practices, and five specialists. On average, patients over 65 years see more than 28 individual doctors during their lifetimes, including primary care, specialists, hospital, and urgent care providers.
Source: Office of the National Coordinator for Health IT (ONC) Infographic based on data from New England Journal of Medicine
So how is all the information from all of those separate encounters compiled and shared? As most readers of this blog know, in today’s highly fragmented health care system, it isn’t. The lack of a comprehensive, unified health record is particularly problematic for Medicare patients, as well as people with chronic conditions, migrant workers, and Medicaid recipients, who are likely to change jobs relatively frequently. It’s hard to make accurate diagnoses, understand trends, and even avoid adverse medication interactions without a comprehensive picture of a person’s health history.
Despite the more than $30 billion investment in the federal Medicare and Medicaid Electronic Health Records (EHRs) Incentive Program (AKA “Meaningful Use”), electronic health data still isn’t flowing as we need it to.
Health data interoperability is too often framed as the exchange of records among and for the benefit of healthcare providers. It is just as important for the individual consumer or patient to have the ability to easily compile his or own health data digitally. By doing so, he or she can serve as an “HIE of one” – the hub that controls the flow of personal health data and makes decisions about who gets to use it and for what. This person-centric approach is appealing both because it makes sense for data to follow the individual (who, after all, has the most at stake in having an accurate and complete health record) – and because the individual is uniquely positioned to circumvent some of the challenges associated with the current lack of data liquidity. Every American has the legal right, through HIPAA, to get copies of his or her own health records—and to share them with others.
The ONC-led Blue Button Initiative is about enabling digital health data access directly by the individual. The Blue Button Initiative continues to have an impact despite CMS’s controversial decision to severely cut back Stage 2 Meaningful Use requirements related to patients’ ability to view, download, and transmit their health information. In New York State, for example, all Medicaid beneficiaries will have access to their records in 2016.
Making Data Accessible for People with Disabilities
According to the US Census, nearly 20% of the US population has a disability. Disabilities may be related to sight, hearing, mobility, or cognitive ability. Even individuals who may not be classified as disabled, particularly the elderly, may have a hard time accessing information, including health data, which is shared in a digital format. (I’ll address the related topic of literacy and health data in the next post in this series.)
What can we do to help? Ways to improve data accessibility include providing:
Alternative text for images on screens
Alternative inputs (such as speech recognition in as an alternative to a keyboard or mouse)
Transcripts of podcasts
A number of free resources that support web accessibility are available, including accessible designs for personal health records (PHRs) highlighted below.
Spotlight: Blue Button Access for Medicaid Recipients in NY
By the end of 2016, New York State plans to deploy Blue Button electronic access to digital health records to its entire Medicaid fee-for-service population, which consists of about 1.5 million people, via the iBlueButton app. iBlueButton is made by the company Humetrix (which, for full transparency, is a consulting client of my company, Clear Voice Consulting).
Spotlight: Accessible Designs for PHRs
A set of 22 design recommendations to help make Personal Health Records (PHRs) accessible, functional, and usable, including a prototype design, is available for free in the public domain. The recommendations are based on group interviews, online surveys, and evaluations of existing PHRs. The work is a project of radio station WGBH’s National Center for Accessible Media, the Children’s Hospital of Philadelphia, and the Inglis Foundation.
How have you designed a digital health program to meet the needs of a particular population that faces health disparities? Did any of that population’s priorities surprise you? Please share your thoughts and experience! And stay tuned for the next installment in this series, Leveraging Digital Strategies to Address Health Disparities: Speak Your Population’s Language.