This blog is the second in a series discussing how vulnerable segments of the US population interact with and experience the health care system. This research is part of the Robert Wood Johnson Foundation’s Right Place, Right Time initiative.
To read more about the background and methods of this project, please visit our first post on the GrantWatch section of the Health Affairs Blog.
Today’s post is meant to answer the six “Ws” about the process lower-income individuals engage in when seeking health information. We believe this step is an essential element in creating health care solutions that speak to the most acute challenges people are facing. New tools or behavioral strategies aiming to remove the obstacles that interfere with vulnerable people getting the care they need will be most successful if they are designed to realistically fit into the structure of people’s lives and their existing suite of behaviors. Developing these interventions rests on a firm understanding of where people are and a commitment to meeting them there.
Early on in the process of our interviews with lower-income participants, we discovered a trend towards seeking out health information from friends and family members, especially those with a background in healthcare. This may in part stem from a lack of trust in more conventional institutions, a topic we will cover in depth in our next post later this month. For many, friends and family were the most trusted sources of information and were the starting point for a variety of health-related decisions, including: choosing a doctor, when to seek medical care, and how to treat a condition. This was summarized by a focus group participant from Chicago who trusted family more than health information online:
“Let’s say I go to my brother or sister and they say, “Yes, this remedy will work.” I have that bond with them. There’s that relationship that they do care about what I’m doing to my body, therefore I will trust them. The other side, I don’t know.”
While middle-income people also use friends and family as sources of health care information, personal recommendations are often just a starting point before engaging institutional sources of information. For many low-income people, friends and family were engaged more frequently and were more trusted than institutional sources.
Many lower-income participants reported that they primarily sought out health care information when it was needed rather than in anticipation of a future need. Often, this included information on how to get insurance and how to find a doctor. Participants were forthcoming about this and quick to note that they knew it was not the most effective strategy:
“When it’s necessary. I usually don’t I guess do things ahead of time. I don’t look at stuff like that until I need it. I guess that’s probably not a good thing, but…”
Though lower-income participants wanted to be more proactive in managing their health, they expressed how difficult it was to stay on top of it with so many competing priorities in their lives including financial stress, childcare needs, and demanding work schedules. Another stumbling block that was often mentioned was concern about the length and complexity of the process of finding health information. One participant described how she found health insurance information to be so overwhelming that she went without it:
“If it’s too hard, I’m just—just like before with the insurance thing. That’s the whole reason I haven’t had any type of insurance for the last six, seven years is because it was overwhelming. You see commercials on TV, they’re sending you stuff in the mail—it was too overwhelming so I was like, “I’m not about to even dive into it because it was too much.”
While middle-income patients also waited to look up certain kinds of information until it was needed, such as the location of an urgent care clinic, they were much more likely to have sought certain types of information beforehand, such as how to get health insurance and how to get a primary care provider.
Like most Americans, our lower-income participants relied heavily on the Internet as a resource for information about all domains of health care. People described both researching complex issues such as surgical techniques and alternative treatments, and looking up practical information such as driving distance to a practitioner’s office or the phone number of their insurance company. With the exception of family caregivers, discussed in more detail in a forthcoming post, few participants were using health apps or patient portals. We asked participants to recreate the steps they took when searching for health information online and found a strong preference for beginning a Web session with a general Google search.
Listening to participants’ detailed narratives of their Internet quests when seeking health information, it was evident that their search strategies evolved over time. While some participants were very savvy with both technology and health care, many participants did not know of sites and tools that were available: cost and quality comparisons, patient portals, and patient review sites. Lower-income patients tended to use more general search terms than middle-income patients. For example, “good doctors” is a more general search than “doctor ratings Chicago.” Though lower-income participants would begin not knowing exactly what to search for, many would eventually uncover resources that became highly valued and continually used. This was often expressed in the context of patient reviews, which allow users to understand the experiences of other patients like them. Patients often expressed that they wished they had known about these tools earlier.
When we asked lower-income participants what device they typically used to access the Internet the overwhelming response we heard was their smart phones. Respondents indicated that over 90% of the time they spent online was through a phone, a result supported by prior research. They also indicated that very few of their friends used computers because of their inconvenience—they are more likely to need charging, the burden of remembering log-in information, and software updates. When confronted with websites that were not mobile-friendly, participants described either suspending their search and calling an insurer or health care provider office directly, or simply giving up.
In contrast, many middle-income participants do use computer to access health information. Most of this access was reported to occur while participants were at work using their computers because it allowed them to make better sense of complex information across multiple windows. However, when not working, most middle-income participants also expressed a preference for using their phone because of its convenience.
The ultimate aim of our research is that it be used to inform the development of tools and interventions designed to improve the health of our nation’s most vulnerable health care consumers. From listening to our participants describe the strategies they use when they want to find out information about health care we uncovered many actionable insights, the four most prominent of which we mention here.
- Given that people depend on family and friends as trusted sources of information, public health campaigns that engage communities and disseminate information via word of mouth strategies might be particularly effective with lower-income individuals.
- Vulnerable individuals often have many compounded sources of stress in their life that compete for their time and attention. Efforts should be made to provide condensed and comprehensible health information, with more detail accessible, but not presented all at once.
- Though many lower-income participants demonstrated high proficiency in using the Internet as a tool to find the information they needed, they sometimes met barriers because of their near-exclusive use of smart phones to access the Web. Websites should be designed with this in mind, employing mobile-friendly designs with the most important information up front.
- Because so many people are unaware of health information tools, such as patient reviews and ratings of cost and quality, health websites and search engines should proactively promote appropriate tools when they detect users may benefit from them. For example, a general search for “MRI Washington DC” could automatically bring up comparisons of average costs of an MRI through different providers in the area, allowing users to benefit from a cost comparison without needing to explicitly search for it.