Personal Health Record Marketplace: The Current Landscape

 

Valerie Purcell, RN, MBA

 

Over the past few years, there has been an upsurge in the adoption of personal health record systems for consumers of health. From the federal level downward, from the President of the United States, U.S. Secretary of Health and Human Services, the National Coordinator for Health Information Technology and the Centers for Medicare and Medicaid Services, personal health records have become a top priority. 

 

Personal health records (PHRs) are managed by the individual health care consumer, and as such, they can be helpful in maintaining health and wellness as well as a tool to help manage illness. In contrast, electronic health records are managed by clinicians and/or health care institutions.  

Personal health records should be lifelong and comprehensive and support information exchange. One of the principle distinguishing features of a PHR is the platform by which information can be stored, accessed and delivered. The platform by which a PHR is built upon can help guide consumers in determining whether a personal health record can be easily updated, withstand geographic boundaries, and maintain reliable privacy protections.   A particular downfall of some personal health records is that they can become a static repository of dated personal health information. Since they rely on the consumer to update their own records, those that build in dynamic capability for updating and storing current medical data and generating bi-directional communication between patients and health providers are most effective in ensuring that the PHR is used often and relied upon as a means for communication and coordination of medical care.

The types of PHR platforms available to consumers include: paper, personal computers, the Internet, portable storage devices, or some combination of these.  Paper-based and PC-based methods for organizing personal health information may help consumers to organize health information but there is limited capacity for sharing information with and between health care providers, especially in during health care emergencies or natural disasters where records compiled from paper or stored on PCs may become lost or unavailable. Storing information onto a CD or USB drive can have limited utility in communicating basic health information, but these, too, can become lost, data can be obsolete if not regularly updated, and there is limited capability for reliable bi-directional interaction between patients and their physicians and health care providers.

One solution to the problem of data loss and protection of data access for consumers is the use of Internet-based platforms which are more sophisticated and utilize a user-authenticated portal, store and encrypt health information. Those that ensure that personal health information is encrypted offer even better protection of consumer privacy. Encryption is the process of transforming information, using an algorithm, to make it unreadable to anyone but those possessing special permission through protected usernames and passwords to access the data. This highly desirable feature is helps protect confidentiality of protected health information and peace of mind.

 

Internet-based PHRs that provide more complex tools for recording health information, including personal health and family history, medication use, adverse reactions, demographic and contact information, as well as capacity for storage of health data help maximize the utility of a PHR.

 

A few Internet-based PHRs feature dynamic tools capacity for combining various software tools enabling bi-directional dialogue between patients and clinicians. The result is a flow of information from and to an electronic health record system into a patient’s personal health record.  Such dynamic personal health record systems can provide an efficient communication channel for patients and their physicians and include the ability to collaboratively manage illness, maintain wellness, ask questions, share results of treatment and progress, request appointments and medication refills. The potential benefits to health care providers included reduced asynchronous communication and improved efficiency by reducing the number of telephone and in-person communication required to resolve questions. Potential benefits to consumers of PHRs include more effective chronic disease management and reduced costs associated with ineffective communication and late intervention for suboptimal treatment progress.  Further, it stands to reason that when coordination of care and access to reliable personal health information can be improved, it can result in reduced errors caused by omissions and redundancies in care, and improved patient safety. 

 

In a recent survey by the Markle Foundation, it was determined that most Americans want the benefits of personal health records. Over 70% believe personal health records would improve the quality of their health care.

 

Despite this, 40% of Americans keep paper records and 57% of Americans don’t keep any health records at all.  

 

We surveyed 35 personal health record websites to provide a cross-section of what is available in the marketplace. Our purpose was to help consumers determine which features can help in organizing personal health information, ensuring privacy and confidentiality, and facilitating more effective communication between consumers and health care providers. Here is what we found:  

 

Platforms:

 

Paper  5

Software-PC  11

Internet-based  19

Portable storage device available 4

PDA compatible 2

 

Annual Cost:

            Free  1

              Free to private group 5

            $1-50  16

            $50-100 3

            $100+ 2

N/A^*  8

 

Language conversion: 2

           

Educational Features:

 

Health library 15

N/A^* 20

 

Concierge Services: 3

Mail service pharmacy: 1

           

Internet Based Data Storage:

            Available 5

            N/A^*  30

 

Interactive Features

Graphing 9

Calendaring 2

E-mail/fax 9

 

Portal for bi-directional communication 6

Pharmacies 1

Physicians offices 5

Hospitals 1

N/A^* 29

Security:

            Password protected (if Internet-based): 19

            Encryption featured: 5

           

Availability:

            Publicly available  23

            Private 12

 

N/A* data not available

 

So what does this survey mean?  It means that you should shop carefully before deciding where to place you personal health information. Questions to ask include:

 

Data Protection and Privacy:

 

1. What are the policies for ensuring privacy and security of protected health information?
2. Have extra measures, such as encryption, been taken beyond requirements for user authentication?
3. What methods are used for granting permission for access to health information by health care providers and family members authorized by the patient?

 

Health information management tools:

 

1. Does the PHR incorporate a variety of user-friendly tools which enable users to organize, store, record, and locate critical health information, including health history, medication history, and physician and health care provider contact and family contact information?
2. Are there interactive tools available to record and share the results of treatment progress, including graphs and logs?
3. Are there educational tools available to assist consumers in managing chronic illness, acute illness and preventive health and wellness?
4. Does the PHR have capacity for data storage and retrieval so that important health information can be viewed and shared when it is needed?
5. Does the PHR have protected emergency-level access for health care providers?
6. Is there a tool available in the PHR for consumers to use to prepare for physician visits and maintain a historical log of past visits?
7. Does the PHR enable communication between patients and health care providers to help reduce phone calls, wait-time for call-backs, office visits, and uncertainties about  answers to questions?

 

 

Help functions:

 

1. Does the PHR provide a method to ask questions and ask for help?
2. Does the PHR provide a reference tool for commonly asked questions about navigating the site?
3. Is there a concierge service available for consumers who require assistance in collecting medical records or organizing their PHR?

 

 

How can we at PatientCentral motivate people to take better charge of their own health care?

 

1. We can do our best to inform people of what to look for and where to find value in a PHR.

 

MyHealthArchive Ultimate is a comprehensive suite of health information management and wellness tools which empower patients to become the center of their own health care. MyHealthArchive Ultimate enables better preparation for  visits to physicians; organization of  personal health history, by system, signs and symptoms; documentation of  prescription and over-the counter medications; and ability to  record and communicate physicians the results of health and wellness initiatives.  MyHealthArchive Ultimate engages people in their own health care by providing interactive communication tools for patients to work collaboratively with their physicians health care providers and their families.

 

 

1. We can help provide value to consumers by  ensuring the means for everyone to have a PHR which allow them to store and maintain and protect basic health information. 

 

MyHealthArchive Lite (www.myhealtharchive.com) is available as a public service from PatientCentral Technologies and enables anyone to begin to develop their own personal health information management system.  As a member of MyHealthArchive Lite, you can enjoy free access to a variety of tools which can help you to document your personal contact information, family and physician contacts, your advance directives, blood type and brief medical history to use  for health care  emergencies., travel and  disaster preparedness.

 

1. We can motivate everyone to succeed in their health by offering web-based PHR tools through sponsorships by professional associations and employer groups.

 

MyHealthArchive Plus subscriptions can be made available to through sponsoring institutions such employers, hospitals, health care organizations, or professional groups, and provides exponential benefits including the ability to focus individuals and groups of people with common interests on better health and wellness. Sponsoring institutions can communicate directly with sponsored members regarding events including campaigns for health and wellness, educational initiatives and advisories.  

 

 

Personal Health Records are not created equally.

 

A consumer would be well advised to shop carefully for features of value to that consumer. Free is not necessarily advantageous if a comprehensive record is needed. Take privacy seriously, and select a service that uses sophisticated technology to protect your security and privacy.  Don’t procrastinate and don’t just store / stash / archive information that soon is obsolete. Actively use your information daily in your personal life and share it with your physicians and healthcare providers.

 

Realize the full benefit of a comprehensive PHR in helping you to be the healthiest you can be.