Personal Health Records for All

[Editor Note. Personal health records figure prominently in most discussions of applying health information technology to improve, among other things, people's lives and the quality of healthcare they receive. Cynthia Solomon is the President of FollowMe™, a company started in 2000 as a web-based Personal Health Record that stores personal health information for its subscribers.The FollowMe management team has been involved in ongoing national efforts to standardize the technology and to assure that privacy and safety of consumers is protected. Here she talks about the need for PHRs to be accessible for people with low literacy skills - I would add people with low health literacy skills to the list as well.]

Just as the Internet and information technology have transformed American life (or life in America) in the last 20 years, the personal health record (PHR) has the potential to transform the healthcare delivery system as we know it.

Today, the PHR is an electronic repository of an individual’s health and medical history, controlled by the patient, who can allow permission to physicians and others to access their digitized record.

While PHRs have finally caught the attention of major stakeholders including health plans, hospitals, major employers, policy makers and even search engines and software giants, as a vehicle to gather (and sometimes sell) data, manage risk, address population health, maximize revenues, sell advertising and reign in health costs; our experience over the past 8 years is that the PHR can significantly impact lives in a much more personal way.

The promise of the PHR is that it can put the patient at the center of their care as a participant not just a recipient. No where is this more important than with those people whose primary language is not English. More than 52 million people in the U.S. speak a language other than English at home. The limited English speaking (LEP) population has increased by almost 4 million in just the last five years, bringing that total to 23 million. Communication is vital to safe and quality health care, and language barriers are another risk contributing to medical errors that few doctors and health care organizations are prepared to handle. The PHR through its capacity to display information in more than one language offers an opportunity to bridge language barriers between patients and their providers. The PHR has the potential to make health care more accessible for patients who speak or understand little or no English.

In 2003, MiVIA, a pilot PHR program for migrant farm workers was launched in Sonoma, California. Today with more than 6000 users and growing; MiVIA members are raising their expectation of the PHR and requesting more tools and functions as a way to communicate with their providers and better understand their medical issues and the medical system.

Given the opportunity, resources and access, LEP populations will engage in technology. The challenge and responsibility we have is to create and develop the tools that address cultural differences in a way that is respectful and effective. This is no easy task. How do we create a technology environment that is inclusive? Who is responsible for doing this? How do we identify and measure appropriate content for these tools?

As the next generation of PHRs rolls out with decision support, condition specific management tools, surveys and risk assessments who will take responsibility for assuring equal access to the same benefits that the English tools provide?

How should we policy makers and technology solutions participate in creating the appropriate development environment for these tools? For starters I would like to recommend that

1. Drop assumptions. Just because a person is poor, mobile, uninsured , or does not speak English does not mean they have no interest in learning ways to help them access the medical system.
   
2. Don’t label – no one wants to be “labeled." We learned this the hard way with MiVIA. People don’t identify themselves as migrants or farm workers and they resent being categorized.
   
3. Respect diversity - don’t pander to it. Invite consumers /users to help identify not only the challenges they have but what they think the solution might be.

The challenge is to use the PHR to “build the bridge” not create a barrier for those millions of LEP patients.

Comments

[sam]

I feel that there are a lot challenges that might face the PHR that might take a while to overcome. We currently live in a society that allows the government to listen to our conversations, and identity theft is still a huge part of our life. Even if PHR is successfully accessible to every doctor office, and every patient... would people still use it?

"The promise of the PHR is that it can put the patient at the center of their care as a participant not just a recipient" will patients still feel that they are the center of their care if they feel that their privacy might be violated.