Literature Review and Environmental Scan: Evaluation of Personal Health Records Pilots for Fee-for-Service Medicare Enrollees. How Do PHRs Benefit Consumers?


Many of the same factors that impede consumers’ adoption and usage of PHRs can be seen as reasons why consumers can benefit from these tools. Individuals with chronic illnesses or disabilities, cognitive impairments, and low reading and health literacy skills may need significant support and guidance to access PHRs. Yet preliminary evidence indicates that, even in these ‘special needs’ populations, PHRs may help consumers keep better track of their own healthcare and communicate more effectively with health care providers. PHRs can also allow consumers to monitor their own observations, such as those captured in the course of everyday living (e.g., exercise, nutritional habits, or relief of pain obtained through medication).

Consumers have reported improvements in their ability to self-manage their healthcare as a result of using PHRs. A survey by Keseleman et al (2007) found that 76% of patients reported that viewing health information in their PHR led them to make better decisions that subsequently affected their care: 42% requested specific care and 37% changed their self-care.[69] As consumers kept better track of their own healthcare, they were better able to inform their doctors at visits, and many reported improvement in relationships with physicians as a result.[70] Over time, patients reported their self-management behavior improved and they became more interested in taking a proactive role in their own care. [71]

PHRs may help consumers to have more productive interactions with their physicians by helping them keep track of topics for discussion. A Harris Interactive study found that 60% of patients 18 years and older could not recall all of the questions they meant to ask their providers during their visits.[72] In another study, consumers reported through qualitative focus groups that they tried to keep records of their own healthcare at home as they have trouble remembering things.[73] A PHR eliminates the need to rely on patients’ recall ability when it comes to healthcare, and consumers in this study reported this was a huge benefit.

The Needs of Chronically Ill or Disabled Populations

The Markle Foundation’s 2003 online survey of the Connecting for Health project found that people with chronic illnesses and those caring for the elderly reported the greatest need and most urgent interest in PHRs.[74] Although the literature in this area is preliminary, improvements have been observed in the management of care for various chronically ill populations and consumers with chronic conditions trying PHRs have responded enthusiastically. A 2002 study of the Whatcom Pursuing Perfection Project by RWJF found that chronically ill patients sometimes encouraged friends and family to participate in managing their PHR.[75] Another study found that patients who interacted with their providers online reported that mode of communication to be efficient for disease management.[76]

Often, problems occur when chronically ill patients do not properly adhere to their health care regimens at home. The SharedCare Plan PHR, which is currently being used by Whatcom County’s Regional Health Information, contains a function that sends a message to a caregiver’s cell phone or computer to remind them to administer medication at a certain time each day. It can provide reminders about prescription refills as well.[77] Such reminder features could help chronic care patients better adhere to their regimens, and even help reduce the number of visits to the hospital or prevent regenerating disease as a result of missed doses.

Diabetic patients have reported improvements in health as a result of using PHRs to better manage their own healthcare. In one example, a patient using the Kaiser Permanente’s PHR HealthConnect reported keeping better track of his diet through a function that allowed him to record his daily food intake. This enabled him to compile a diet history, and he was successful in achieving needed weight loss.[78]

Lind et al. (2007) explored using digital pen diaries (e.g., electronic journals) to impact palliative home care cancer patients’ pain assessment. Patients were given digital pen diaries in which they recorded momentary pain intensity and number of extra pain analgesics consumed three times per day. Patients reported greater involvement in their own care, and increased contact with their caregivers, which led to a feeling of increased security in the safety and quality of their health care delivery.[79]

Providers also responded quickly to digital entries involving any medical changes, and this high level of involvement in their care led patients to feel they are receiving an enhanced quality of care.[80] Integrating a PDA with moment-to-moment assessment capability into PHRs for this type of chronic care could be an area for future research. Breast cancer patients have also experienced progress in self-management of care through PHRs. One study gave breast cancer patients access to an internet-based system designed to streamline the search process for clinical trails; they reported this was helpful in guiding them towards appropriate treatment.[81]

PHRs have the potential to improve the health care transitioning process from pediatric to adult health care. This may be particularly beneficial for chronically ill children who continue into adulthood with disorders such as spina bifida, cystic fibrosis, congenital heart disease, or cancer. One study examined electronic PHR use in adolescents with spina bifida, a congenital malformation resulting in physical and learning disability. In one focus group study, Carsten et al. (2007) found that parents (particularly mothers) tended to control their child’s (the patient’s) health care information. Parents reported a specific gap in standard medical record forms. They do not offer enough space to hold complete information for their children with spina bifida, therefore, many of these parents maintain their own form of paper records of their children’s health care as a result.[82]

Carsten et al (2007) also found that parents in the study reported a desire for a central medical record, either electronic or paper-based, that would contain all of their children’s health information, supporting the continuity of their children’s care through the information sharing of their care involving many different providers and institutions.[83] Since these children have difficulty understanding their health care records or remembering care issues, a PHR could help these children and their designated caregivers keep track of their own health care as they transition to adulthood.

The Needs of Cognitively Impaired Patients

Many patients over the age of 65 have problems with cognitive function. Memory impairment affects roughly 11% of women and 15% of men in this age group.[84] Serious symptoms of mental illness are also found in 2% of women and 3% of men over 65 years of age.[85] Yet Laurikas et al. (2007) found that patients with mild to moderate dementia were capable of handling basic electronic equipment and patients reported having more confidence and an enhanced positive effect from using Information and Communications Technology (ICT)-based solutions aimed at compensating for disabilities affecting memory or daily activities[86]. Global positioning systems (GPSs) and medical monitoring devices such as blood pressure monitors resulted in increased feelings of safety and reduced anxiety for those with dementia.

Kim et al. (2005) developed a web-based, patient-centric PHR entitled ‘The Personal Health Information Management System’ (PHIMS), and tested it in a group of low-income, elderly and disabled individuals in the Everett Housing Authority in Everett, Washington. Since individuals who share the characteristics of the targeted population for this study tend to be less adoptive of computer and Internet technologies, the researchers provided a community-based resource sharing and support center with public access to computers with nursing students available to assist them with computers.[87]

To assist elderly users with slow motor-vision synchronization, the researchers adapted the system response times to accommodate delays and extended reaction times. Final results indicated that 92% of the participating residents were satisfied with the system in general.[88]

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