Design Considerations for Patient Portal Adoption by Low-Income, Older Adults

Abstract

This paper describes the results of an interview study investigating facilitators and barriers to adoption of patient portals among low-income, older adults in rural and urban populations in the southeastern United States. We describe attitudes of this population of older adults and their current level of technology use and patient portal use. From qualitative analysis of 36 patient interviews and 16 caregiver interviews within these communities, we derive themes related to benefits of portals, barriers to use, concerns and desired features. Based on our initial findings, we present a set of considerations for designing the patient portal user experience, aimed at helping healthcare clinics to meet U.S. federally-mandated ‘meaningful use’ requirements.

INTRODUCTION

As part of the American Recovery and Reinvestment Act, healthcare providers across the U.S. are under a mandate to implement patient portal systems. These systems do not just need to be put in place: providers must demonstrate ‘meaningful use’ by significant percentages of their patient population in order to qualify for the financial incentives provided by the law [3]. This federal mandate impacts all communities, but those where there are significant populations of older, low-income, adults may be particularly affected. Older adults consume vastly more medical resources of community health clinics than other age groups (and in rural communities make up a larger proportion of the patients, because younger people often migrate to urban areas), so older adult’s adoption and use of patient portals is the most critical in terms of the potential to actually see economic and health care benefits. These benefits will only be realized if the portals are used effectively. In this research, we are focusing on lower-income older adults because there are more health care issues among lower-income populations, due to lack of insurance coverage and less access to preventative healthcare. This is the population that has the most to benefit from effective use of patient portals. However, we suspect that this population has the most barriers to adoption and use of patient portals.

Our team has conducted in-depth interviews with patients and caregivers in this demographic to understand the barriers to adoption of patient portals in these communities. We focus on perceived and actual barriers to adoption as well as the perceived benefits of use and actual benefits accruing to patients already using the portals. We find that lack of familiarity with technology and lack of technology-related skills are prevalent barriers, while security and privacy fears are a consistent concern. We also find that among some of our interview population there is a general lack of interest in learning about technology. Based on our findings, we provide an initial set of design considerations that may be useful for patient portal designers and IT staff deploying these systems.

BACKGROUND

The field of Human-Computer Interaction (HCI) has lately turned its attention to healthcare informatics. There is mounting evidence that applying techniques of User-Centered Design (UCD) to eHealth applications is not only beneficial, but necessary [19]. Many of the inquiry-based techniques of interviewing and surveying are already common in communitybased health inquiry, and we apply those techniques here. Interdisciplinary research that crosses computing, social science, and medicine has much to offer, both in gathering requirements and in designing new systems. As an example, a recent study showed that patients with Type-2 Diabetes are interested in having social computing systems that can leverage the social network to help motivate them towards healthy behaviors [20]. Pang et al. performed qualitative interviews to understand how friends and family members share information and health updates about a chronically ill patient, noting that synchronous video conferencing was not as useful or desirable as expected in this situation because of contextual and privacy issues [24]. Pratt et al. applied a Personal Information Management (PIM) lens to consider how patients manage all of the data they receive and collect while interacting with the healthcare system as a whole, and they demonstrate the significant challenges that patients face in managing and integrating this information [25]. Evidence shows that health information technology in general is having positive impacts on patient outcomes [8] and these examples demonstrate the diverse ways in which HCI can help to identify, contextualize and address healthcare technology issues [13].

Personal Health Records

Some HCI and healthcare informations researchers investigate user experiences with Personal Health Records (PHR), a broader classification of systems of which patient portals are one type. Many PHR systems are commercially available apps that are patient-controlled and independent of the healthcare provider. While the work of Baird et al. showed that the intention to use such PHR systems is high, their survey demographic was middle-income, educated, graduate students, which is not representative of the population as a whole [7]. Kim et al. demonstrated that in the case of patient-initiated PHR systems, most older adult patients do not keep the systems up to date, even when they have regular, weekly access to technical assistance with the system [14]. The work of Liu et al. is particularly relevant as they showed that patients and caregivers face numerous issues in PHR adoption including dealing with software complexity, medical terminology and concerns about security and data accuracy [17]. Tang et al. posit that education is one of the keys to increasing adoption of PHR systems that are patient-managed [29].

The Patient Portal Mandate & Meaningful Use

Beginning in 2015, providers who do not comply with Stage 2 of the Meaningful Use mandate will lose portions of the Medicaid and Medicare reimbursements that they are due. This requires that at least 5% of patients actively view and download information through their primary care provider’s patient portal and that at least 5% of patients use the secure messaging feature of their portal during the measurement period [2]. This means that healthcare clinics must invest in patient portal systems and patients at each clinic need to learn about, register for, and actually make use of the portal. While meeting this mandate may be easy in affluent, well-educated communities, it seems likely that there will be particular difficulties in meeting the meaningful use requirements in less affluent communities. The mandate does include exemptions for counties where more than 50% of the population does not have internet access with bandwidth higher than 7Mbps, but determining which counties fit this criteria is difficult. Our work investigates rural and urban communities where a significant portion of the population is low-income and elderly.

Patient Portal Adoption

Research related to adoption issues around patient portals has surged, likely spurred on by the federal mandate and the meaningful use specifications. Ruland et al. presented the CONNECT system, a patient portal deployed in Norway, and discussed numerous user experience issues, including a clear tradeoff between data security and user friendliness [26]. Wilson et al. showed that Technology Acceptance Models (TAM) [23], can be usefully applied to predict whether patients will adopt systems such as patient portals [30]. In a survey of existing literature related to technology adoption by patients, Or and Karsh found that most studies focused on patient demographic and health condition variables or prior experience with technology, while not enough focused on the human-computer interaction variables or the organizational or environmental variables that could impact adoption [22].

Klein studied patients’ behavioral intention (BI) and factors, such as technology self-efficacy, to predict likelihood of adoption of patient portal systems. He found that greater technology self-efficacy and personal innovativeness positively impacted BI, as did having a chronic health condition. Patients were also more likely to express intention to use patient portals provided by primary care physicians than those provided by specialists [15]. Wilson and Vance developed a model to predict patient portal adoption and found that incorporating facilitating factors such as prior use of offline health systems, structural need for health services, age and chronic health conditions all led to better adoption predictions than just using behavioral intention [31].

In a focus-group study by Zickmund et al., factors that were associated with interest in using a patient portal included dissatisfaction with healthcare provider communication and inability to access medical information and records, while factors associated with disinterest in the portal included usability issues and the possibility of reduced face-to-face contact with the provider [33]. Goel et al. conducted a telephone survey with urban patients to inquire about reasons for enrolling or not enrolling in a patient portal and found that lack of information and motivation were the most important factors preventing enrollment (63% of respondents); negative attitudes toward the portal was another critical factor (30% of respondents); while technological obstacles accounted for only 8% of respondents who had not enrolled [10]. They did not find any age, gender or educational differences, although they did find that African-American respondents were less likely than white respondents to express interest in self-management features offered by the patient portal.

Technology Adoption by Sub-Population

Greysen et al. have investigated how functional impairment impacts internet use among older adults and found that this had negative implications for meaningful use of patient portals [11]. Yagil et al. also found that using everyday technologies generated stress for older adults, which also suggested a potential barrier to patient portal adoption and use [32].

Ancker et al. have investigated how disadvantaged populations use patient portals, based on system access logs of more than 74,000 patients at a Federally Qualified Health Center in New York City [4]. They found good adoption of the system by low-income participants, but small persistent racial disparities in both likelihood to be offered an access code and likelihood to actually use the system. Thus, income itself did not appear to be a limiting factor in adoption of patient portals, but may have a modifying influence in combination with other demographic factors. However, these results may not generalize to rural populations.

Fruhling reports on a qualitative study of e-Health users in rural Nebraska and reports that usability and clarity were important in the development of such systems, and also noted that security and privacy issues were a major concern with this population [9]. However, the study offered no comparison to urban populations.

Research Gaps

The synthesis of research described shows that there is knowledge about eHealth technology adoption by different subpopulations, and knowledge about patient portal adoption gleaned from modeling behavioral intention based on various criteria. Our work adds to this literature by providing a deep understanding of the factors that impact adoption for low-income, older adults. Unlike most of the previous work, our approach is unique in that it details attitudes of both patients and caregivers. In addition, our focus is on the subpopulation most likely to benefit from use of patient portals: lower-income, older adults, who tend to have significant chronic health issues. In examining this sub-population, we have interviewed a broad mix of races, genders and ethnicities, ensuring that our results are generalizable to low-income, older adult populations across the US. We have also included participants from both urban and rural areas, allowing further generalization from our results.

INTERVIEW STUDY

Our interview study was aimed at gaining an understanding of the IT environment among low-income, older adults living in urban and rural communities, the information seeking behaviors of such patients and their caregivers, their technological access and abilities, their knowledge, perceptions and use of network technology, eHealth and patient portals.

Participants

We conducted interviews with 52 individuals: 36 patients and 16 caregivers. Participants were recruited from four North Carolina counties: Forsyth County, the location of Wake Forest School of Medicine, and Caldwell, Greene, and Robeson Counties, the locations of three health centers in the Community Partners Healthnet network. The health centers include an urban academic health center and three rural Federally Qualified Health Centers (FQHCs). These counties represent variation on the urban-rural continuum [1], such that two (Forsyth, Caldwell) are in metropolitan areas with a population of 250,000 to 1 million, one (Robeson) is a nonmetropolitan area with an urban population of 20,000 or more, and one (Greene) is a nonmetropolitan county with an urban population less than 2,500.

Table 1 shows the participant demographics for patient and caregiver participants. More specific demographics of our patient interview participants, including their education level, is broken down by age group in Table 2. For the purposes of this study we define ‘caregiver’ as a friend, family member or other individual who helps a patient look after themselves. Caregivers may be involved in transporting the patient to health care appointments, checking on medications, picking up prescriptions, helping to research treatment options, helping to pay for health care or file insurance claims and helping the patient with exercise and diet. Table 3 shows the breakdown by age, education level, gender and location of caregivers who participated in interviews. In at least some cases, the caregivers we interviewed are elderly and/or suffering from chronic health conditions themselves.

Table 1.

High-Level Interview Participant Demographics

Category	White	African Amer.	Amer. Indian	Other/ Mixed	Hispanic
Patients	13	13	3	7	7
Caregivers	5	6	2	3	3
Totals:	18	19	5	10	10

Table 2.

Patient Participant Demographics

Age	Male	Female	Rural	Urban
55–64 (13)	7	6	5	8
65–74 (13)	5	8	9	4
75+ (10)	5	5	7	3
Totals (36):	17	19	21	15

Table 3.

Caregiver Participant Demographics

Age	Male	Female	Rural	Urban
unknown (2)	0	2	2	0
<55 (4)	0	4	4	0
55–64 (6)	0	6	3	3
65–74 (3)	1	2	1	2
75+ (1)	0	1	0	1
Totals (16):	1	15	10	6

Methodology

Data collection was completed between October 2013 and June 2014, by three trained interviewers. The goal of this study was to recruit patients and caregivers that were racially and ethnically diverse, but representative of the population of older, low-income adults. The research team followed best practices for recruiting community participants for qualitative healthcare related studies [6]. Patients and caregivers were recruited based on recommendations from clinic partners. Investigators reviewed lists of potential participants and selected individuals that reflected the desired diversity in gender and ethnic group, as well as geographic distribution, household income, and educational attainment. One hundred and ninety-two patients were mailed a letter detailing the study and then received a follow-up phone call. Fifty three refused to participate, for reasons including no interest and lack of time, 88 did not respond, and 11 were added to a wait-list. All patients who were contacted were asked to identify their primary caregiver. These caregivers were then contacted as potential participants in the study. We also contacted several other potential patient and caregiver participants referred to us through our network of contacts.

The patient and caregiver interview was designed to elicit use of technology and electronic patient information management systems to manage chronic conditions by patients and their caregivers. First, participants were asked about their general health, self-management strategies, and health care quality. Second, participants were asked about their health literacy. Third, participants were asked about their background with technology and any technology experience. This included questions about the accessibility of computers and the internet and environmental and community factors that affected technology usage. Fourth, participants were asked about the benefits of using electronic health information systems to manage their health. This included e-health literacy, training to use patient portals, and privacy and security concerns they had about health information being available via the internet. Lastly, participants were asked about their individual use of their patient portal. This included facilitators and barriers to patient portal use, strategies to expand use, and concerns.

Interviewers met participants at a location of the participants’ choice, usually in their homes, but sometimes at their healthcare center. The interviewers explained the study, and obtained signed consent. Participants received a $20 incentive upon completion of the interview. In-depth audio recorded interviews ranged in length from thirty minutes to two hours.

Data Collection and Analysis

Data analysis was based on a systematic, computer assisted approach [5] using Atlas.ti. Interview transcripts and interview notes constituted the raw data and varied from brief responses to longer narratives. The interviews were edited for accuracy and identifying information was removed in this process. For interviews conducted in Spanish, the interviews were simultaneously translated and transcribed. Data analysis began with the collection and ongoing reflection on interview content through listening to interview recordings and reading the interview transcripts. The research team reviewed each interview and recorded themes, patterns and issues that arose in those narratives [18]. This information was shared and discussed by the entire research team. The transcribed interviews were then coded in a two-step process, based on the use of coding dictionaries created by the team. Tags in the coding dictionaries reflected themes present in the interviews as well as concepts from the conceptual framework and research literature. During an initial training period, the research team members practiced coding interviews to reach agreement on assignment of codes. Each transcript was coded by two research team members and any differences were resolved through discussion. This double coding throughout data processing was a check on completeness and drift from the original code definitions.

RESULTS

Descriptive Statistics

Tables 1, 2 and 3 show the demographics of our different participant populations. This sample is, by design, diverse, and segments of the older adult population in North Carolina are represented. Ethnic minorities are well represented. While our patients participants are diverse in gender, our caregiver participants are predominantly female.

Portal Usage

Of the 36 patient participants, only five had already accessed and made use of their patient portals. These patients are all in relatively low-income households, vary in age range, but all have at least a high school diploma. Of the 16 caregivers we interviewed, three had used their own patient portals, though none had used patient portals on behalf of the patients they cared for. The three caregivers using their portals were all younger than 65 and two had university degrees while the third had only some high school education.

Socio-Technological Environment

Most of the participants we interviewed were aware that there is internet service available in their communities, and this was true across urban and rural participants. However, three rural participants could not answer questions about whether there was internet service available in their communities. More than half of our patient participants had computers, laptops or tablets (20 patients had some kind of computer while 16 patients had none). However, not all of the patients with computers had home internet access, indicating that some of these devices may not be effectively in use. The percentage of caregiver participants who use the internet was much higher, with 14 of the 16 caregivers having home internet access.

We had a few participants who talked about having computers that were not ‘plugged in’ or ‘not set up yet.’ For example, caregiver C9 (a female in her 70s) mentioned a computer that she had just acquired (but not yet set up) on the advice of family members. She had plans to get it set up and then sign up for internet service. This demonstrates that some elderly patients are being nudged into using technology by their family members, but this process can be slow.

Many of our patient participants and a few of our caregiver participants had no interest in technology at all. For example, P1, a rural patient, did not own a computer or have internet access at home. When asked if it was possible to get access to the internet in his community, he replied:

The fact is, I don’t feel like I need to know. That’s one reason I don’t be going in to check on it. For what little business I have going on I don’t need to know that stuff.

Similarly, caregiver C11 expressed a complete lack of interest in technology. These examples demonstrate elderly patients and caregivers who would be unlikely to become users of a patient portal.

For urban participants, internet access is easily available. For example, P17 described the socio-economic situation and how it relates to internet access in his community:

The people that’s in the neighborhood that buys the homes – we’re in a subdivision and they’re running $120K to $150K. […] So, I don’t say that they have any issues with getting that. The cable’s all available. All of it’s available if they want it.

Similarly, P23 noted the difference in wireless networks visible to her depending on what part of the city she is in:

Here in this area […], it’s become a sort of depressed area…And so what I have discovered – and this is a thing that I know by looking at my wireless networks – what’s available besides me. So on any given day on this street, I can see up to ten…Whereas in other areas, I’ll see so many, I can’t even list them.

P23 noted that people can access computers and the internet at the Urban League. She then described a situation with her cousin using these computers:

I had dragged my cousin up there to - the woman I gave a computer to. Her sons gave her a computer. And she just won’t grasp - you know? But, she was willing to go up there [to the Urban League] and use the public computers to do her own internet searches. So I notice that people who are somehow afraid to have it in their own hands, in their own home, will go there.

This also reflects that some people are simple lacking confidence with respect to technology. For example, when asked what keeps him from using a computer, P11 responded:

Like overall I don’t have trust in myself. I don’t think I can do it.

For the participants who do regularly use the internet, there appeared to be a dichotomy between using it for work versus leisure. C7, a caregiver participant who is older than 70, noted that she uses the internet to play games and to video chat with her grandchildren, thus falling into the leisure use category. P36, a rural patient, falls into the former category and described his internet usage this way:

I really use the internet for things that I really need and when I need to do something for work. I am not the type of person that uses it for leisure.

Similarly, one of the rural caregivers we interviewed, C4, used the internet extensively for her work, reporting that she and her husband are heavy users of technology:

I have a laptop, and we carry that with us when we travel, so when we’re in motel rooms we can access the internet…At home, we have just the regular traditional standalone computer, high speed so we can download things very quickly. I use that basically for email and I’m the publicity person for [organization], so we have our fundraisers. I send out all the info to the websites and papers and things like that…

There appears to be no lack of internet service available in the communities our patient and caregiver participants are living in, but only about half of the elderly population we interviewed are actively engaged with computing technology and the internet. Those who are engaged use technology for work purposes, for communication and to play games.

We also asked participants about their perceived health literacy levels and, as expected, responses to this were varied, ranging from participants with high perceptions of health-literacy, to those with very low confidence in their health literacy skills.

THEMATIC ANALYSIS

Patient Portal Benefits

The five patients and three caregivers who had already used their patient portal systems were more likely to identify specific uses and benefits. The patients and caregivers who had not yet used a portal could only guess at the benefits of a patient portal, often repeating back the words and features the interviewer used to describe the system.

Convenience

Caregiver C2, who had used her own patient portal, noted how it would be very convenient for her and her mother if her mother’s providers offered the portal and they could access it from other doctor’s offices. She also noted that being able to fill out forms online was easier for her and she felt that if she could use it for her mother then she would not have to write out all of her mother’s medications, because she already has them on her computer and she could simply copy and paste them into the portal when filling out forms:

It was really easy to log into, to fill out your information whenever I set mine up. It was easy to answer the doctor’s questions instead of waiting there and answering a stack of paper: I’d prefer to answer online and it would go quicker; my hand gets tired of writing. Especially with my mom having a long list of medicines – I already have it typed into the computer; I can just copy and paste instead of typing it. So that would be helpful…

Caregiver C15, who looks after her husband’s elderly parents, could see how a patient portal would make it easier to bring medical staff up to speed in case one of her in-laws had a medical emergency, noting:

It would be good, for example, if I have to take him or her to the hospital, not to have to come or talk to the doctor for them to send their records, I could just open it there and say “look, this is their medical history and this is what they have”, or if I have to go with another doctor, just to open it and show him what they have…

This caregiver pointed out that the ability to share accurate medical information could result in fewer prescriptions that could react with one another.

Digital Archiving and Analysis

The patients already using their portals could give some very specific examples of ways that the system had already been helpful to them. Many of these benefits related to the way a patient portal acts as an archive of health information and even provides ways for patients to conduct their own analyses of lab results over time. For example, in response to a question about whether they would rather call or use the patient portal to ask their doctor a question about a non-pressing medical concern, P16 responded:

I’d rather message him ’cause he’d message me back, and then I’d have it in writing and I can sit there and study it. If I call him, and he get to talking, and I done forgot half of it by the time [laughter] the phone call is over, I will be in as bad of shape as I was when I started.

This highlights the fact that information provided through the portal is archived, and can be referenced as needed, mitigating the need for a patient to remember the details.

P21, who suffers from short term memory loss, noted two important benefits of the patient portal. First, he explained that sending a message (as opposed to calling on the phone) forces him to get his thoughts together:

You’ve got to think about what you’re saying when you write it down, you know, so it’s more concise.

Second, he noted that the information on the patient portal is:

…great for reinforcement of what the doctors told you. I can’t remember what he told me, so I can get on and look it up and it’s in print and I can understand that.

This also supports the notion that the digital archiving aspect of the patient portal is a real benefit for elderly patients, who may have issues with memory function. Similarly, P5 noted that she really likes being reminded of upcoming appointments and that she can look up information that she has forgotten, also noting memory issues:

Well just the fact that they remind me and notify me of when my appointments are and the fact that they give me the information and it’s there where I can see it and I won’t forget it, maybe. Because I tell you what, you can tell me but not everything – I can’t remember everything.

When asked about whether the system helps her keep track of her medical information, P19 replied:

Yes. Because I’m constantly comparing my lab results to the previous ones, which they do the chart or the graph on there – either one – and it’s just very easy.

This demonstrates that in addition to just archiving, the portal allows patients to conduct their own analysis of past and present health results. P23, who hadn’t accessed her portal, mentioned this as a potential benefit:

So, again, this would be me trying to assess my status. How high have I come – how high have I progressed from point A to now. That would be of interest to me. How is it different? You know?

Another benefit of using the portal that was highlighted was the way test results were available quickly and were contextualized. For example, P27 explained:

…when I go into the laboratory I have a battery of tests run I can quickly access them and see the values and see what the acceptable ranges are, and then if I have a question or a concern I can immediately email my doctor…

Neutral Communication Medium

Participant P35 hypothesized that a patient portal system might provide a more neutral medium for delivering difficult news or difficult to hear advice. Similarly, C8 felt that he would be able to say things to the doctor through the portal that he wouldn’t say in person:

‥ I’d probably have something to say to him [the doctor], and it’s a lot easier than to say it to his face because he’d run the other way.

These examples illustrate that communication mediated through a patient portal may allow patients to discuss issues which could be awkward to discuss face-to-face.

Patient Portal Concerns and Barriers

Privacy and Security

The most frequent concern noted by potential patients and caregivers regarding the idea of patient portals was that of privacy and security. While many of the participants understood that the system was password protected, they still felt that their information would be at risk. For example, P6 noted that having her information on the computer was a main factor in preventing her from wanting to use a patient portal:

I just don’t want no information about me discussed on other computer, internet, anything. I will talk to him face to face, discuss whatever my issues are or he can send me a letter, but I wouldn’t participate in it.

This demonstrates a lack of understanding that medical records are already stored on networked computers, but shows that privacy of medical information and lack of security of online systems is a critical concern.

A number of patient participants were more pragmatic about their privacy, noting that they did not really care if someone found out about their medical issues, but still had concerns around issues of identify theft. For example, P17 noted:

If you’re sick, you’re sick. I don’t want everybody and his brother knowing it, but if somebody stole an e-mail where I said I had cancer, well, what are you going to do with that? Who cares? It’s not like you got my social security number and my house address.

While P36 was not worried about other people finding out about his health issues, he expressed a concern that the information available on patient portals could be used by insurance companies to deny coverage, which could have a negative financial impact on his family:

Instead what worries me are material things they can get from you but an illness is something that comes and many times comes with age. So it is concerning that others may be able to find things they may be able to use to create you problems or to reject you for something; that will be my only concern, nothing else.

Provider Face Time

Patients expressed a fear that use of the patient portal could eventually replace face-to-face visits with their healthcare provider and this was seen as a potential negative consequence of signing up. P17 expressed this concern, noting:

I do things ’cause I have to with the e-mail, but I’m still old-fashioned enough that I prefer face-to-face. I don’t even like discussing much on health issues with a doctor by phone. […] But, there’s anything really major about my health, I want to face-to-face.

P16, who used his patient portal, had similar misgivings. He noted that he preferred face-to-face communication and had concerns about the patient portals replacing this, but as an actual user of the portals, seemed resigned to it:

…I like to talk to the doctor personally. You can get a better understanding. You can read the face and see what they’re telling you. If it’s not right, you can tell that also… But, as you were saying, using the portals and all that, sometimes you might not be able to talk to him face-to-face, and you have to use the portals. So, you have to learn how to live with that, too.

These comments suggest that some patients may have strong misgivings about the future of this technology.

Lack of Interest

Fifteen of the 36 patient participants had not used a patient portal and expressed no interest in trying one. Many of these patients fell into a category of much older patients and they felt that they were too old to learn how to use a computer, the internet or a patient portal. For example, P33 noted:

I think I could learn, but I don’t think I want to take up the time to mess with it. I told you I ain’t got but a few years or days or what.

P34 noted similar reasons for his lack of interest in the portal:

Because of my age for one thing. Remember it would be hard probably to catch on to it too. Because when you get 79 you don’t remember as you used to.

These comments demonstrate that lack of interest in technology appears linked to age, and the absence of computing technology during formative and working years for many elderly patients. We also noted that the patients in our survey with lower levels of schooling were less likely to own computers and less likely to know how to use them. This ties in to our next theme, which is technology.

Lack of Technology

Patient P9 noted his lack of a computer as the reason he would not be able to get on to the patient portal, but this tied into a lack of interest:

I can’t. I ain’t got one [computer] anyway! I dont have one. That’s what keeps me from – if I had one but I don’t have one… And don’t want to get one. Ain’t nothing but a headache for me, really.

In a similar situation, P31 noted that she would not be able to access a patient portal because her computer is not working:

My computer’s messed up…and until I can get a better one, I’m just stuck.

If the main barrier to using computers was affordability, patients and caregivers who don’t own their own computers could go to public computing facilities such as libraries or community centers. However, it seems that for many patients, the absence of computers in their homes is due to lack of ability, confidence and interest. For such patients, using computers at the library is unlikely to be of interest.

Usability Issues

A few patients also discussed usability issues, such as system complexity. Many of these concerns appeared to relate to the difficulty of initially logging on to the system. P17 had observed his wife use her patient portal and he commented about how difficult it was to use:

And that’s a [mess] getting into their website. It is a [mess]. It is not even kosher as far as it’s just way too difficult. And that’s probably is the reason why I haven’t just fooled with going here.

Similarly, caregiver C1, who looks after her mother, talked about the need for easy to remember passwords, suggesting:

Like a password, an easy password. For a senior citizen, where they would know maybe four letters.

Medical Language

Caregiver C12, who used her own patient portal once, expressed a concern about how seeing medical information in writing can be scarier than hearing it explained to you:

…these words were so – I mean it just made it seem like you’ve got so much wrong with you…

This demonstrates that for some patients, reading medical information may be too stressful. In this case, C12, who worked as a nursing assistant, noted that she had no interest in going back onto the portal after that experience.

Desired Features

Many of the patient and caregiver participants who had not already used a patient portal suggested features that are already part of most patient portals, such as the ability to look at lab results, schedule appointments, send questions to the healthcare provider and renew prescriptions.

Complete Medical Records

One of the features requested both by those who had already used their portal and those who had not, was access to their complete medical record, or at least a fully detailed medical history. P19, who used her patient portal, noted this as the only drawback she could see:

I’d say my only drawback is medical history. I like a lot more detail than they can probably put on there…

This desire for full information was reiterated by several participants; when P12 was asked if she would sign up for a patient portal at her doctor’s office if it was offered, she replied:

I believe I would. Because it would be interesting to see some of the things […] written in my medical records.

These comments reflect a strong curiosity about doctor’s notes, comments and diagnoses among patients.

Contextualized Medical Advice

The other type of feature that many patient participants mentioned was the provision of information related to their medical conditions, daily tips or encouragement messages to help them stick to a diet or exercise regimen, and a dictionary of medical terms. For example, patient P31 noted:

I think if a person has like have my trouble with walking and stuff […] if they haven’t got it on there, they need more of that to be able to encourage a person to walk.

Similarly, P19 expressed an interest in having more helpful medical information available through the portal:

Maybe if there was like a dictionary there that when something is a term you don’t understand […] something if you click it will give you a little bit…

While some patient portals did have this information available, it seemed that what would be most helpful to these patients is customized healthcare information, contextualized to the information in their lab results on the portal.

Technical Assistance

The patients and caregivers who had already been on the patient portals typically found them easy to use and had no concerns about technical assistance. But patients and caregivers who had not been on the portals felt that having really good technical assistance would be necessary. Some participants were unclear about how they would go about getting help using a portal if they ran into problems. C1 suggested that she would call the computer company, which demonstrates a lack of understanding of the difference between hardware and software. Other patients were interested in having training videos available to watch before trying to use the patient portal. As an example, C4 advised:

If someone had done a little video or something and said, “Okay, you do this and this and then here you can do this,” people would, I think, be more receptive.

DISCUSSION

The five patients and three caregivers who are already using their patient portals seem quite happy with the systems and the features provided. While this is a small number of portal adopters, it suggests that the systems must have at least basic usability and functionality. Of the 31 patient participants who were not already using a portal, fifteen expressed no interest in trying to use one. Our findings suggest that both lack of technological experience and lack of access to technology (which appeared to be linked to age and education level) are major factors contributing to this lack of interest. This suggests a deeper social issue that clinics and the federal government must contend with. If many older low-income adults do not have the education and inclination to use technology in general, it is problematic to expect them to use patient portals. For patients who fit this profile, any potential benefits of using patient portals are completely overshadowed by the costs to them in terms of the amount of effort they would have to expend to sign up and use these sites. This represents a significant barrier for clinics which need to meet the federally-mandated meaningful use guidelines for patient portals. This finding supports the evidence found by Goel et al., who found that lack of motivation and negative attitudes were dominant factors in adoption rates of portals, though we found lack of technology to be linked to this and also prevalent [10].

Most patients interviewed described their communities as having internet available, most often through a television cable company or the phone company. Even patients that had very little computer knowledge were able to report that they knew that the internet was available. Thus the ‘digital divide’ does not reveal itself with respect to internet availability in North Carolina [12]. Of the 36 patients interviewed, half used the internet and most knew that it was available. However, half of them had no experience of actually using the internet directly, and so the digital divide does reveal itself in terms of internet usage. One patient participant mentioned having had the internet in the past but not being able to afford it at the time the interview was conducted, and it is possible that some of the other participants who do not have internet also could not afford it, but would not want to say so. It seems that income may be a factor that could prevent some patients and caregivers from using patient portals, because even if internet service is available, it may not be affordable for the lowest income patients. This fits with research conducted by Ancker et al. who found that income appeared to be a modifying factor, but not a main issue preventing adoption [4].

Trust issues appear to be another important barrier that will prevent some patients from signing on to patient portals. Even those who can see the potential benefits may be hesitant to sign in and use the system due to concerns about the privacy of their health and personal information. The information sent through patient portals is typically encrypted and is more secure than email, but none of the participants we interviewed mentioned this distinction and we surmise that most are unaware of it. Moyer et al. found that while many patients expressed willingness to use email to converse with their doctors, few of them mentioned any concerns about the security of such email correspondence, despite the fact that most email is unencrypted [21]. The lack of trust relates to the threat of hackers engaging in identity theft or of unethical healthcare employees accessing information that our participants only expect to be seen by their doctors.

Face-to-face communication with doctors was also an important issue that arose throughout our interviews. We saw evidence that some patients feared the use of portals would be a replacement for face-to-face visits. This is similar to the findings of Zickmund et al. who found this possibility to be related to disinterest in using patient portals [33]. This concern must be addressed in the marketing of the portals.

Design Considerations

Our findings point to some ways to make patient portals more palatable to low-income, elderly patients and caregivers. These could help patients and caregivers who are interested, but have misgivings or a lack of technological knowhow. We focus here on the design considerations arising from our findings that add to the many design considerations (such as the need to address privacy concerns and ease the login process, and the need for clear helplines) already published in the literature.

Audio Lexicon and Lab Results

Written medical language can be frightening to patients because they may not recognize written terms that they are actually familiar with. Providing audio versions of terminology could address this. In addition, allowing doctors to record a simple audio message to explain lab results could be more personal and less intimidating for patients than a typed explanation.

Video Training

Many of the older patients seemed to indicate that they would want training before using the system, and videos seemed to be the preferred medium. This makes sense, given issues such as poor eyesight for reading and the lower rates of literacy among low-income, older adults.

Advice & Encouragement

Patients are most likely to trust medical advice from their own provider. Doctors in a practice could create a set of common advice and encouragement messages for patients to be made available with lab tests or other medical reports posted on the portal.

Some of these design considerations will immediately seem problematic to many HCI researchers. Adding audio features to the system will increase the complexity and lead to other usability issues, and providing videos is great, as long as everyone’s device can handle the video codec. We are not suggesting that these design considerations are absolute requirements, and they do clearly introduce design trade-offs. It is our hope that these considerations may prompt portal designers to consider how best to address the needs of older adult patients.

In terms of promoting the patient portal, clinics should be emphasizing to patients that the system is not meant to be a replacement for face-to-face patient-provider appointments. And in fact, the portal can be a way to increase personalized attention for patients. If doctors are going in to the portal system and typing notes to explain test results to a patient, it could be just as easy for a doctor to record a message and relay the information that way, if the system would allow it. This more personal mode of delivery could, through a word of encouragement from the doctor, provide comfort to patients digesting important medical information at home.

Finally, it is important to consider addressing those patients for whom technology is strange and intimidating. Providing patient portal training at community centers and libraries could help older adults who have no computer experience get access to the portals. If it is necessary to get these patients using portals the benefits to them will have to outweigh the high costs of learning how to use technology. It is important to make sure that such patients are not left behind if clinics mandate use of the portals. Patients without any computing experience would need a lot of help getting on to the system, and this would require a heavy investment on the part of the healthcare providers. It is unclear how effective such a strategy could be and whether it would be worth the investment.

CONCLUSION

We have presented a detailed qualitative study that outlines the potential benefits and barriers of a patient portal system, from the perspective of low-income, elderly patients and their caregivers in North Carolina. This is an important perspective, as this population presents a significant challenge for healthcare providers who must implement patient portals and meet the federal government’s meaningful use guidelines. Our results show that lack of technological experience, disinterest in technology, lack of trust in electronic systems and economic factors all present barriers to adoption of patient portals for some portion of this population. However, some elderly patients are using portals and finding important benefits related to convenience and archiving of information.