Informatics Review > Thoughts > Development of a Model and Comparison of Personal Health Record and Related Health Sites

Development of a Model and Comparison of

Personal Health Record and Related Health Sites

  Kathleen Sun

School of Health Information Science

University of Victoria

 Prepared for: Denis J. Protti, Ph.D.

 January 10, 2001

INTRODUCTION

Personal Health Records is a new and developing area. Currently, in the health industry the majority of health care data management is performed by the health care practitioner or sponsoring institution and the majority of patients have never seen their own medical record. A major culture change is already underway with health consumers demanding to know more and to partake in their health care decisions and management. There have been a number current of publications that has prompted discussion in the health informatics industry.

A number of companies and organizations that have independently begun to create different kinds of health information management tools made for use by the broad consumer population. 40 of these companies will be included in this comparison and analysis. Some of the possible uses of consumer health information management tools may include:

¨    To provide a means for health consumers to manage their own health data by providing tools for consumers to collect, monitor, trend, and disseminate their own health data

¨    To provide education and linkages to health information sites

¨    To provide access and data exchange between the consumer in the community and the health care professionals in a variety of health care facilities

The purpose of the Personal Health Records comparison is to categorize the PHR currently available on the web. A model for comparison of the Personal Health Records sites has been developed. This model mainly contains criteria that are based on the type of health record and other services that the web site provides. Selected categories for evaluation include: site information, features of the health record, other site services, and a usability rating.

This report will not focus on the benefits, critical success factors, or effect of the developing PHR on the health system but will instead focus on the development of criteria and a model to compare personal health records and related health information sites.

The main source of the web sites used in the comparison comes from Dr. Dean Sittig's web site (http://www.informatics-review.com/records.html). The sites included in the comparison are not necessarily a complete list of all PHR and related sites.

The goals of the comparison include:

¨    To develop a model for comparison of Personal Health Record sites

¨    To analyze and summarize what types of services are currently available

¨    To analyze and summarize what types of services are currently available

¨    To assess industry trends in the development of Personal Health Record type of sites

METHODS

Limitations of Research and Analysis

This comparison is limited to the information that is currently available from each PHR site. Further contact with the source company has not been attempted for this piece of research. For example, it is impossible to properly assess the extent and quality of security features on a PHR site. In such a case, only the information that has been provided by the company has been provided in the analysis (i.e. type of security features). PHR sites that were in development, but provided a demonstration or tour of their site were included in the analysis. The tour or demonstration in this case was evaluated in lieu of the fully functioning PHR. In addition, sites that required a fee in order to set up a PHR were not included in the analysis. However, their site and information that was available from the site has been included.

Description of the Model Utilized for the Comparison

Classification of the different sites available on Dr. Sittig's web site and others found was done at a high level. The analysis and comparison of the various types of personal health record and related service sites included creating a test patient and some simplistic test patient information. This included creating demographic information, an email address, simple medical history, etc. A model for comparison has been developed that broadly takes 4 basic sets factors into account: site information, features of the health record, other site services and a preliminary usability rating for the PHR. Please see the “PHR Model Description” in the PHR Site Comparison 10-Dec-01.xls spreadsheet for a graphical illustration of the model used for comparing PHR candidate sites. A detailed written description of the model and comparison criteria follows:

Site Information

The category of Site Information includes 3 criteria: status/type of site, cost and public access.

Status/Type of Site

The definition of a PHR that has been used for this comparison is: Type of Site includes for the purposes of this analysis: Fully Functional, In Development, No Longer Exists, Health Information Source, Other. Status/Type of Site includes for the purpose of this analysis:

¨    Fully Functional PHR

¨    In Development PHR

¨    Health Information Source Only

¨    Disease specific health profile

¨    Internet based Medical Record

¨    No Longer Exists

¨    Cannot Be Determined (CBD)

¨    Other (description)

Cost to Create and Maintain a PHR

The cost of starting and maintaining a personal health record has been included in the analysis. The possible ratings include:

¨    Free

¨    Cost (includes USD/CND)

It should be noted that for the purposes of this directed study the sites that required a fee for membership were not accessed and analyzed beyond the information available for no cost on the web site. The total number of sites with such fees was 4.

Public Access

Some PHR sites may only be accessible if membership is held with another organization and therefore is not immediately accessible to the general public. This criterion has been captured by applying a rating that indicates if the average consumer can access and utilize the PHR.

¨    Yes

¨    No

¨    Comment

Features of the Personal Health Record

 A health record can be a very complex, intricate, and sometimes immense set of data. Currently, health care practitioners and information specialists have many challenges gathering, manipulating and presenting this data in a form that is effective and efficient for the purposes of quality health care delivery.  Patients also have some responsibilities of managing their own health care information. For example, a perfect example of when patients may use a personal health record to collect, manage, and share their health information is in the case of chronic care diabetes where the patient manages their own condition from the home on a daily basis without additional health care practitioner intervention. The PHR may be a tool that will not only support the patient in managing their care, but also provide them with the ability to electronically disseminate their health information at their discretion and obtain some health care support remotely. An analysis of the types of feature of a health record is necessary in order to understand and analyze what kinds of functionality are built into currently existing PHR’s and also what breadth and depth of health care data management tools patients currently have the option of utilizing. Currently, there are 7 broad categories that are included in the PHR’s available on the web. These categories include:

1.    Personal information

2.    Family medical history

3.    Immunization history and planner

4.    Allergies to food and drugs

5.    History of personal illnesses or past procedures

6.    Medications and or supplements

7.    Contact information for other health care practitioners/clinics/etc.

In future, further analysis is desirable concerning the necessary, desired, and optional types of services and tools patients may need to manage their own health information. The continued development of the types and content of personal health records may be influenced by the results of such an analysis of client need and requirements. In addition, the role of the increasingly educated and empowered consumer may influence significantly in the future potential and development of personal health records and related health care data management tools.

Site Services

Many of the sites that house or are developing a PHR also have a variety of other of health care related services. The inclusion of these services along with the PHR have marked the development of a basic “suite” of health care related tools that are designed specifically to support the consumer. Some of these services may include:

¨    Definition of a PHR, benefits, future

¨    Access to other health information

¨    Demo-tour (educational material on how to use a PHR)

¨    Access to a health care practitioner on-line

¨    Health risk appraisal

¨    Data exchange with other health care practitioner or facilities

¨    Privacy, Security, and Confidentiality Technology and Information

¨    Other services (to do list, ability to print the medical record)

For many of the sites the access to other health information was very well developed and included sometimes extensive lists of links and related health information for the consumers. Simply the existence of the additional health information resources has been recorded, and not the quality, quantity, or usefulness of these links and health information sources has not been assessed. Access to a health care practitioner online implies that an individual patient can write a direct question or comment to a live health care practitioner who will respond to them personally. Health care practitioner services were not included in the categorization if personal by the patient to the provider was not possible. For example, some sites had daily Question & Answer articles from an expert doctor, however, these were viewed simply as additional information, and not as a personal service. The analysis of the privacy, security, and confidentiality technology and information has been kept to a minimum for the purposes of this comparison and analysis. The possible existence of a privacy, security and confidentiality technology and information has been included as a site service, however, the quality and effectiveness of the security technology cannot be fully analyzed from the information available. Similarly to any other industry, a well package suite of tools and services will mean greater consumer interest and business. Therefore, a true analysis of the business needs of the consumer would be beneficial.

Usability Rating

The usability of a system or tool can be defined as “the extent to which a system can be used by specified users to achieve specified goals with effectiveness, efficiency, and satisfaction in a specified context of use” (Coble, et al, 1997). Usability labs have now become a commonplace function in the software and web page development industries. Usability of the health care data management tools will play a significant role in determining the acceptance, adoption and widespread utility of the Personal Health Record. The explosion of the Internet has propelled the populations of first world countries into the age of computerization. As a result, the average person in the population is gaining increased education and skills using personal computers. However, the average health care consumer may or may not have adequate computer skills, which coupled with software screen and/or web page design may make using a health care management tool an onerous task. There are many cultural, educational, and skill level impediments to the successful implementation of a new information system tool. PHR’s will also experience and be hindered by such impediments; however, there is a different culture and incentives for consumers to adopt this new technology. Impediments to adoptions may include:

¨    Access to technology

¨    Education

¨    Training

Aspects of usability that generally affect users ease of PHR or web site utilization that are relevant for analysis include for example:

¨    Ease of navigation

¨    Time to complete tasks

¨    Ability to find desired information

¨    Site presentation and layout

¨    User’s satisfaction level

¨    Percentage of tasks completed correctly

¨    The number of problems encountered

¨    The amount of assistance required

For the purposes of this comparison only, a preliminary usability rating that has taken into account all usability factors has been assigned to each site. Aspects that will be evaluated for this initial assessment include:

¨    Ease of navigation

¨    Quality and quantity of information available

¨    Site presentation

 This initial value rating scale is as follows:

¨    Below Average

¨    Average

¨    Above Average

¨    Not Applicable (N/A)

In future, a much more thorough study of the usability of various PHR and related sites must be undertaken in order for a quality analysis to be completed.

RESULTS

In total there are 40 different PHR and related sites that have been included in the analysis and comparison. Please see the PHR Site Comparison 10-Jan-01.xls spreadsheet for comparison details.

Site Information

A summary table showing the results of analysis for the Status/Types of PHR’s and related sites has been created. The graph is available in the PHR Site Comparison 10-Jan-01.xls spreadsheet under the tab “Status_Type Graph”. A summary table showing the breakdown of the costs to create and maintain a PHR has been created. The graph is available in the PHR Site Comparison 10-Jan-01.xls spreadsheet under the tab “Cost Graph”.

Features of the Health Record

There were 16 out of 40 evaluated sites that qualified as fully functional personal health records. Of these 16 PHR’s all essentially held the 7 main listed features of a PHR (that were developed for the purposes of this comparison). In some cases there were several other features of a health record that some sites utilized. Some of these other features include: There are a wide variety of types of sites and services that are currently being developed and offered related to personal health management over the Internet. The 40 sites evaluated represented a wide variety of tools and educational sources that are now being available for the health consumer. Some of the most developed sites also included a number of additional site services. Similar to other industries, it can be hypothesized that consumers will gravitate and utilize an attractive suite of services that have been developed with their personal needs in mind. Some of these other services that the PHR and related sites offered included:

DISCUSSION

The initial intent of this research was to a) develop a model for comparison of the type and features of a personal health record and to b) categorize the current PHR's available via the Internet. Due to time, resource, and information limitations this full analysis was not possible. Thus the analysis completed incorporates the initial vision however at a less detailed level. It was found that there are only 8 of 16 currently operational PHR sites that can be access for free, and an additional 4 sites (that appear fully functional) that require a fee in order to create and view a health record. The remaining 3 sites the cost could not be determined. A detailed analysis about the actual content of the PHR sites has been limited, and more focus on other broader features and criteria of PHR sites as well as the services they provide.  12 of the initial 40 sites evaluated no longer exist. The only Internet based medical record (not a personal health record) to boast a patient self-management component, which could be accessed via the web, was the LifeConnect software package. LifeConnect was also advertised the most capabilities for data exchange for both patients and providers. For example, the available means for data access and exchange included: personal computer, the Internet, fax, email, pagers and a variety of hand-held and medical devices (XXX). The majority of the health information and personal health record sites were based out of the United States. At times it was difficult to enter the correct personal identification information due to the restrictions of set fields in the data entry forms (for example, enter “state”, and there was no out of country option). Canadian equivalents should be examined and in future it may be of interest to perform an analysis to determine the effectiveness of an American based PHR system for the Canadian health care consumer market.

Areas for Future Research

There are a number of possible avenues for continued research. Possible areas may include:

¨    Development of a model to specifically classify, compare and analyze existing and functional personal health records (this may include an analysis of the types of medical data and method of data input in the health record).

¨    Analysis of the critical success factors that are necessary for the success of a PHR and the barriers that may hinder it’s development

¨    In depth evaluation of the Health Information Bank concept

¨    Analysis regarding what types of tools are desirable to support the patient population in personal management of health care data

¨    Analysis of the Privacy, Security and Confidentiality issues related to PHR acceptance and use

¨    Development of a tool to measure and analyze the usability of the PHR sites

¨    Analysis of how various environmental factors, such as the type and culture of the health care system (publicly or privately funded for example), may influence the development and success of PHR’s

CONCLUSION

The development of the Personal Health Record may be the wave of the future that will truly create a patient centered health care delivery model. In reality, there are a number of barriers that exist that must be resolved before the realization of truly interconnected health information systems. However, pioneering strides are currently being made as evidenced by the ever-growing number of consumer health management sites. At the moment, there are only a handful of sites that truly qualify and uphold the ideal of a personal health record. It will be exciting to see this personal health care management industry develop.

Informatics Review > Thoughts >  Development of a Model and Comparison of Personal Health Record and Related Health Sites

© 2001 Kathleen Sun