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Online Personal Health Records (PHRs): Could caregiver involvement drive PHR use for people with chronic conditions?


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Personal Health Records, or PHRs, are health records that are initiated and maintained by a patient. Government incentives to promote adoption and “meaningful use” of EHRs (Electronic Health Records) by physicians has also raised the healthcare community’s interest in online PHRs such as Google Health and Microsoft Vault. A recent California Healthcare Foundation survey revealed that PHRs can empower some people to take better care of themselves, especially people with chronic conditions. However, the growth of PHR use remains low even for this high-potential segment.

Evantage believes that a key component

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of this issue is the involvement of caregivers in a patient’s PHR. To dig deeper, we are conducting primary research with patients and their caregivers. We want to learn how to improve the design of PHRs to incorporate the needs of patients who have caregivers. We want to learn whether a better designed PHR could empower patients and their caregivers to use it more and experience improved health outcomes as a result.

This is an independent research project. It is not being funded by any Evantage client. The results will be freely shared with people who participate in the research or who request the findings.

Research Scope

While there are barriers associated with general adoption of PHRs, including data privacy concerns and the hassle of entering information manually, there are additional barriers for patients with chronic conditions. These obstacles include low motivation, physical health barriers, and patients’ reliance on caregivers for reporting data about their condition. These barriers clearly stand in the way the updating of PHR information on a frequent and consistent basis, which is the key to their effectiveness. In addition, caregivers often may not have access to a patient’s PHR, which limits their involvement with both the patient and clinicians responsible for patient care. Historically, PHRs have been designed to facilitate an interaction strictly between the clinician and patient. However, for patients with chronic conditions who rely on caregivers, this may not be effective.

According to a 2004 study, 21% of adult Americans (44.44 million people) provide unpaid care to an adult 18 years or older. In our research with chronic heart condition patients, we found that caregivers play an important role motivating patients. They remind patients to take medications, accompany them to the doctor’s office, seek information on health conditions, and keep track of the patients’ progress. In some scenarios we found that patients living with heart failure for an extended period of time were resigned to their condition and displayed a low motivation to comply with self-management tools. However, their caregivers were looking for ways to keep the patient motivated. So, could empowering caregivers with better tools to manage the patient’s PHR drive PHR adoption? Could this improve the health outcomes for people with chronic conditions?


We are conducting primary research with patients and caregivers using online surveys and telephone interviews. The patients in both groups are 50 or older, are living with at least one chronic condition, and have some familiarity with online tools for health information. The study participants are being recruited using a multi-pronged approach:

o Crowdsourced user recruiting: We have partnered with websites that have active communities for caregivers and patients with chronic illness and have also approached health advocates and community leaders on Twitter to help us reach our study participants. We designed this methodology specifically for this project. We would like to thank @Caregiving, @Andrewspong, @ElderCareRN and @CaregiverTweets for all their help so far.
o Traditional user recruiting: We are working with an external firm to recruit participants using a screener. The intent is to identify patient-caregiver pairs and get their perspectives on using a collaborative approach to keep PHRs updated.
o Evaluating existing PHRs: Lastly, we are evaluating a couple of known PHRs in the marketplace today. The focus is to identify the gaps with respect to caregiver needs and identify critical usability issues that affect PHR use.

Significant Projects Influencing PHRs

o The Federal Government’s open source initiative NHIN Connect could provide an extremely valuable platform to develop several PHR tools. In his OSCON talk, Tim O’Reilly rightly compared this to what satellites are doing for location based applications today.
o The hard work of patient

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advocates like e-Patient Dave and Regina Holiday is most noteworthy in putting forward the patient’s voice and influencing discussions on Healthcare Information Technology systems to make patient data more easily available.
o The Robert Wood Johnson Foundation’s national program, Project HealthDesign, is redefining the next generation of PHRs by finding ways to integrate

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observations from daily living into patient records.

You Can Contribute

There are a number of ways you could contribute to this project.
o If you know of a patient living with a chronic condition, or a caregiver taking care of someone who has a chronic condition, please ask them to take this survey.
o If you are a patient or caregiver advocate, please spread the word in your community to take the survey.

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If you are a PHR company and would

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like to brainstorm design solutions, please contact me via email at sdube (at)

buy cheap software download Evantage would not charge a consulting fee since this is part of our research effort.
o Share your thoughts on the project in the comments below.

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4 Responses to “Online Personal Health Records (PHRs): Could caregiver involvement drive PHR use for people with chronic conditions?”

  1. [...] Article Sheetal Dube, User Experience Blog, 20 August 2010 SHARETHIS.addEntry({ title: “Online Personal Health Records (PHRs): Could caregiver involvement drive PHR use for people with chronic conditions?”, url: “” }); [...]

  2. Hal Amens says:

    Most of today’s PHRs do require way too much administrative time and in some cases technology, e.g., converting paper records to a digital format that can be posted to the PHR. That will probably be solved in the near future.

    Privacy is another issue. The solution there may be to have levels of privacy. Level 1 would provide the information a care giver with limited skills could use to manage day-to-day health needs and facilitate patient/doctor interactions including emergency medical technicians (if needed.) Level 2 would provide information for licensed support including social workers and some nurses. Level 3 would be full access. The patient should be able to designate levels of access greater or less than these based on their condition and the level of trust they have in their healthcare providers.

    All of this this important, but IMHO, not enough to “drive” PHR use.

  3. henry says:

    Great blog but unfortunately I can’t read the links because I’m color blind so they render impossible to read. Check this out:

  4. Sheetal Dube says:

    Hal – I totally agree that the administrative time for maintaining personal health information is going to get reduced in the future.
    With regard to privacy, one of the things we are finding in our research is that the patient and their unpaid caregivers (usually a family member) use the same login information to access their PHR or EMR. The important thing to note is that the caregivers are playing a vital role in managing the patients health conditions in these scenarios.
    I was wondering if you have come across this segment of caregivers in your work and if you have discovered that their needs for accessing/ managing the patients information is different from the people who are more able to manage their health condition themselves.