Literature Review and Environmental Scan: Evaluation of Personal Health Records Pilots for Fee-for-Service Medicare Enrollees. Consumer Perceptions of PHR Utility


Wisespread adoption and use of PHRs will not occur unless they provide perceptible value to users and are easy to learn and easy to use and have associated costs (both financial and effort) that are easily justified related to the PHR's perceived value.

Paul Tang

Although there is a low level of public awareness about PHRs, surveys have found consumer interest in using PHRs once the concept was explained. For example, a 2004 poll found two in five adults keep personal or family health records in either paper (e.g., paper folders with benefit statements) or electronic form. Among those who do not keep either paper or electronic records, 84 percent thought it was a good idea to do so.[94] Nearly 70 percent of respondents in a 2005 Markle Foundation survey said they would use an online PHR to check for mistakes in their medical records and to check and refill prescriptions.[95] About one-half of participants in a 2006 Markle survey said they would use a PHR to email physicians and retrieve test results over the internet, and 58 percent said they would use PHRs to send secure, private email communications to their physicians.[96]

Existing evidence suggests consumers who understand the functions a PHR offers generally accept them and would use them for a variety of tasks (e.g., to check their records for mistakes, refill prescriptions, and communicate with providers).[97] Assessments of several existing PHRs have shown high overall levels of satisfaction.[98] For example, one study was conducted by the Palo Alto Medical Foundation (PAMF), which has been operating an EHR-PHR integrated system since 2002. PAMF solicited qualitative feedback from PHR users and found almost all (92 percent in 2005) of their users were satisfied with the services offered.[99] Staff affiliated with Kaiser Permanente’s HealthConnect, VHA’s My HealtheVet, LifeLedger (a PHR targeted to adult children and other caregivers of the aged), and Whatcom County’s SharedCare Plan, all have found consumers’ feedback to be very positive.[100]

Consumer acceptance of PHRs appears to vary by both population subgroup and PHR platform (e.g., paper, personal computers, internet, and portable devices) used. Consumers who have higher levels of health or financial risk (e.g., individuals with chronic conditions, recent illnesses, higher deductibles, and health savings accounts) may value PHRs more than those who are not in these circumstances, as they have more to gain from their use. Two research studies, however, found no statistical evidence that chronic illness leads to increased desire for use of a PHR.[101]

A Wall Street Journal/Harris 2004 consumer poll found that, among consumers in general, there was no clear preference for a PHR platform. Many preferred the smart card (a pocket-sized card with embedded integrated circuits which can process information) (28 percent), but other choices ranked close behind, including a PHR on a home computer (non-internet based) (27 percent); paper-based PHRs (24 percent); and internet-based records (20 percent).[102] Older persons and those from underserved communities were less comfortable using an online PHR than younger persons. One-half of those aged 65 and older said they prefer paper-based PHRs, compared with only one in five of those under age 65. Conversely, younger respondents were more likely to prefer web-based records (30 percent of those under age 65, versus 10 percent of those aged 65 and older).[103] While elderly populations may not prefer online PHRs, they may be open to using them.

Consumer Views on the Utility of PHR Data Elements and Features

Kaiser Permanente’s Jan Oldenburg suggests that PHR features that are interactive, or provide added convenience, are most often used by consumers. According to Oldenburg, consumers appreciate having access to test results and secure messaging with providers, as well as the ability to order medications electronically, or to make appointments. Kaiser Permanente also found consumers’ PHR use increase when the PHR helped them resolve an issue on their own. Representatives from Consumers Union and AARP expressed the view that comprehensive medication lists are among the most useful data elements for consumers.[104] Consumers Union argues that older populations (those over age 50) would be very interested in using a PHR to track medications (e.g., drug name and dosage, when to take it) and plans to launch a medication tracking software tool in early 2008 as a possible prelude to the offer of more comprehensive PHR options in the future.[105]

Medicare beneficiaries, in particular, value sharing their PHR with family members, friends, care managers, and others.[106] This feature increases in importance as beneficiaries’ cognitive and physical function declines. Beneficiaries may authorize designated proxies to access information in their PHR for many reasons. For example, they may do so because they are physically unable to access the PHR themselves; are cognitively unable to comprehend or act on the information; lack access to a computer or the ability to use a computer; or prefer to have another person involved in their health care decision making.

Consumers seem to value the ability to print out their PHR. They find it easier to read information in a printout versus on their computer screen. For those who do not have a home computer but have occasional access to one (e.g., at a library or community center), a hard copy is portable. They can also carry a small-sized printout in their wallets, place a full-sized printout in an envelope on the refrigerator door, or keep a copy in the car in case of an emergency. Consumers and health care providers using health information print-outs from PHRs during an office visit find it very useful. Whatcom County reports, for example, that when consumers bring a paper copy of their ‘SharedCare Plan’ PHR to their health care provider, it promotes dialogue.[107]

Incorporating Consumer Perspectives of Utility into PHR Design

It is generally agreed that a PHR’s utility should be judged by its usefulness to the consumer. While PHRs are thought to be valuable to consumers, this has not been widely or empirically proven, nor has a comprehensive value analysis of PHRs ever been conducted.[108] Thus, little is known about the extent to which consumers value PHRs, or how they would prefer to use them.[109]

User-centered design usually focuses on a product's primary user. In contrast, PHR design to date has focused almost exclusively on the perspective of others, such as providers and payers.

Margarita Rodriguez and Patti Brennan

Due to the lack of rigorous data on consumer perceptions of PHRs, existing PHRs have largely been designed based on the priorities of the health care industry, which may differ from those of consumers. For example, while health care professionals emphasize the benefits of communication with providers, consumers may place higher value on using PHRs as a way to gain independence from providers― to become more aware of their medical conditions, and better able to take independent action.[110] Consumers may be more interested in PHRs as tools to facilitate a more fulfilling and convenient health care experience, rather than to improve quality of care.[111]

User-centered design is a well-established process that has been widely adopted by many organizations to deliver products that meet consumers’ needs.[112] User-centered design seeks to align the conceptualization and design of PHRs with consumers’ needs through a structured product development methodology. This process involves users throughout all stages of website development.[113] User-centered design begins with a user needs assessment that aims to understand consumers’ environments and workflows and how PHRs might integrate with their daily lives.[114] The needs assessment may utilize a variety of techniques, including field-based user observation, paper prototypes, electronic prototypes, scenario boards, storyboards (a series of simple pictures to show the sequence for completing a task), discussions, and focus groups.

Intuit uses a process called ‘consumer driven invention’ to learn about consumers’ needs. The process is geared to find problems that are important to consumers today, and use this information to determine how to best solve the problem. Intuit’s approach is to:

  • Deeply understand people’s current pain points;
  • Watch people and build tools that work the way people work;
  • Create solutions that help them make better decisions and feel more confident;
  • Focus on the prospect and include non-customer behavior to learn of consumers’ needs.[115]

Intuit begins its user-centered design efforts with what it calls, ‘follow-me-home observations’ in which researchers actually follow people home and watch them use the PHR in their own environment. They talk minimally to the consumer simply relying on observation. They also conduct town hall meetings, standard usability testing, user focus groups for observation, user forums for discussions, and surveys. In ranking the value of the data sources, Intuit’s principles are: trust follow-me-home observations more than usability tests; trust the customers’ words more than preconceived notions; trust ‘verbatims’ more than survey research; and observe the actions behind the words. Intuit also performs a quantitative analysis of its qualitative data (by coding its qualitative information) to verify its preliminary findings.

As Intuit and others have found, not all consumers desire a PHR to manage their healthcare. (Intuit found that only 41 percent of those surveyed wants a tool to do so.)[116] Consumers’ views stem partly from their experience with the health care system, which has a history of putting the health care provider in charge of a consumer’s care, rather than having the consumer play a major role in managing his/her own care.[117] Consumers may not understand how their medical records are recorded and stored. Many incorrectly believe that their physician has a complete record of their care and many also incorrectly believe that this record is stored electronically.[118] Additionally, many consumers do not understand the importance of a complete and accurate medical record for obtaining high quality medical care.

As important as it is to uncover and align with consumers’ needs, there may be limitations to user-centered design approach. First, consumers may not be clear about or fully understand what PHR features they want or would use, particularly for a tool that they are unfamiliar with. They may have difficulty envisioning a tool that leverages technologies they have never seen or used. (For example, 30 years ago, people would have had difficulty imagining how a computer mouse could be useful.)

According to Patricia Flatley Brennan, RN, PhD, FAAN, Director of Project Health Design, consumers may not be able to conceptualize how PHRs should be designed for the future. This creates an inherent tension between user-centered design and innovation. Whereas user-centered design responds to users today, Brennan believes that PHRs should be conceptualized and developed for 2012.[119]

Despite the difficulties of user-centered design for PHRs and other products, there are techniques and lessons that developers have learned that can help identify problems that consumers face and uncover solutions to these problems. George Olsen, in his 2006 article titled, ‘Designing Breakthrough Products: Going Where No User Has Gone Before’, advocates the following steps:[120]

  • Look for real problems that consumers don’t realize they need to solve;
  • Help users visualize solutions (mockups and prototypes help consumers understand product concepts);
  • Recognize that consumers may not comprehend a product concept immediately;
  • Ask how consumers might use a product (rather than asking whether they would use a product);

He argues that it is important to give consumers something familiar to ‘hang their hats on’, and that designers should consider downplaying the truly breakthrough aspects of the product, especially if they are hard for consumers to understand.

Medical product developers have successfully used scenario boards to assess and validate whether a product is useful to consumers. Scenario boards consist of a series of paper or electronic-based sketches that loosely depict how the new product integrates into the consumers’ workflow and environment.[121] The product is loosely sketched, purposely focusing on the product’s process, rather than its form or features. The scenario board helps users to envision and point out how the product may fit into or interfere with other important activities and products. It helps users to offer feedback for how a PHR might be modified to enhance its use within the home, at work, or while exercising.

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