Expanding the Reach and Impact of
|Table of Contents|
|Executive Summary (Stand-Alone)|
|Preface: A Vision of e-Health Benefits for All|
|Chapter 1. Introduction|
|Chapter 2. Mapping Diversity to Understand Users’ Requirements for e-Health Tools|
|Chapter 3. Assessing the Evidence Base for e-Health Tools for Diverse Users|
|Chapter 4. Strategic Factors in Realizing the Potential of e-Health|
|Chapter 5. Partnerships for Meaningful Access|
|Appendix 1. Environmental Scan of 40 e-HealthTools|
|Appendix 2. Project Interviewees, Experts Consulted, and Reviewers|
|Appendix 3. Chapter 3 Literature Review Summary|
|Appendix 4. A Comparison of Internet Use and Health Status of Populations That Experience Health Disparities|
Appendix 1. Environmental Scan of 40 e-Health Tools
Between August 2003 and February 2004, project staff conducted an environmental scan of consumer e-health tools in the academic, nonprofit, and commercial sectors. The scan was based on review of two major e-health research programs (the National Cancer Institute’s [NCI] Small Business Innovation Research [SBIR] program and the Robert Wood Johnson Foundation [RWJF] Health e-Technologies Initiative); articles and citations in the peer-reviewed social science, biomedical, and public health journal literatures; and recommendations from tool developers and other experts in the field. Project staff identified 40 tools for in-depth investigation. The purpose of the scan was to learn about the major characteristics, intended audiences, and evaluation practices of a range of tools. Examples were sought that are recognized by major research funders, use methodological rigor in their evaluations, have public health significance and commercial viability, and/or are technologically innovative. There was no expectation that this exercise would “cover the waterfront” or collect generalizable information. Inclusion in this exercise does not in any way imply an endorsement or evaluation of the quality or effectiveness of the tool.
For consistency, and to glean as much information as possible, the scan was conducted using a standard instrument (see Instrument Used to Conduct Environmental Scan for Consumer e-Health Report). Questions were based on theories, methods, concepts, and terminology from the peer-reviewed literature; reports on the state of e-health technologies; and handbooks on health communication research. The questions were pilot-tested with experienced e-health developers and researchers and revised based on their comments and suggestions. The instrument was used to conduct interviews with e-health tool developers and other experts (see Appendix 2 for names of interviewees) and review the tools themselves. Staff also sought out information on the tools in journal articles and other documents that were either publicly available or supplied by the tool developers.
Information was collected on the following topics, using the form at the end of this appendix:
The resulting descriptions, presented below, represent a late 2003 and early 2004 snapshot of the e-health phenomenon. That phenomenon is rapidly moving: new technology is routinely being introduced; the market surrounding digital applications is in flux (at least two companies in the interview group were acquired during the short interview phase); and grant cycles begin and end. Nearly all of the interviewees described forthcoming products, services, research, or publications that will change the profile of their tools.
The “average” e-health tool in this group of 40 uses at least two delivery methods—once again treating the “other” category, for simplicity, as representing a single method. In fact, as with functions, the “other” category is large and diverse and includes several unique devices for collecting and transmitting personal health data. The overwhelming number of e-health tools in the interview group—34 of 40—are delivered through the Internet, either through restricted-access (member/subscriber) Web sites, public Web sites, or a combination. Some tools that were initially developed for delivery via CD-ROM, notably, the Comprehensive Health Enhancement Support System (CHESS), have been converted to the Internet. e-Health tools generally use more than one delivery method. However, in most cases a primary form of delivery (e.g., secure, restricted-access Web sites) is combined with one or more ancillary methods (e.g., e-mail notices).
Audiences and Audience Segments
The findings show the complexity of e-health audience variables and the many ways developers think about reaching their intended audiences or user groups. The primary strategy used by developers in this group of 40 is audience segmentation. The findings align with the observations made in the Institute of Medicine report, Speaking of Health, about the adaptation of health communication for diverse audiences (2002):
Transferability of Personal Health Information
The interviewees were asked what would be required for the user to transfer personal health data (e.g., history of tobacco use, blood sugar, blood pressure) to another organization’s application or device. The findings were varied and sometimes ambiguous. Of the 23 tools on which there is information for this question, some respondents focused on users’ ability to get their data in any form, including print, while others focused on interoperability issues related to standards and other technical matters. Only 7 tools have technical interoperability with other electronic systems. Another 7 make users’ data available to them in print. In general, the answers indicate the distance yet to go to make applications interoperable and to provide alternatives to proprietary approaches.
Privacy, Confidentiality, Security, and HIPAA
For these tools, security and confidentiality protections are generally addressed at the design stage, with a monitoring protocol thereafter. All interviewees in this group indicated awareness and, where needed, detailed knowledge of the Health Information Portability and Accountability Act (HIPAA). This fact is tempered by the reality that the HIPAA Privacy Rule does not apply to many e-health tool providers. The interviews highlighted the limits to privacy and confidentiality protection in online communities, as well as participants’ willingness to continue to share despite these limitations. The developers and distributors of open-access e-health tools with chat rooms and listservs make a serious effort to call users’ attention to the fact that the confidentiality of their contributions is not protected; theoretically, consumers use these sites with their “eyes open.” Participants must register, and the chat rooms in both open- and closed-system e-health tools in this group are monitored, and in some cases moderated by trained people, to minimize inappropriate behavior. For the e-health tools that are distributed as part of closed systems (the large majority in this group), chat room and listserv participants’ privacy seems more assured, as a function of the restricted access combined with stringent security measures.
Research and Evaluation
In-house or self-evaluation is the most common form of evaluation, done for 36 of the 40 e-health tools. Nearly one-half (18) are also evaluated by a nonaffiliated third party (i.e., an independent researcher). Only 10 e-health tools are evaluated by an affiliated third party (e.g., a sponsor or purchaser). Two-thirds of the evaluations (26 of 40) use at least one validated measure. All 40 e-health tools have undergone some kind of formative research. Almost all of the e-health tools (36) undergo process evaluation, described as usability testing or “ongoing feedback” (associated with continuing quality improvement). Some form of outcome evaluation has been conducted on the majority of e-health tools (33 of 40), with 17 e-health tools being evaluated in randomized controlled trials. (This is likely an unrepresentatively high proportion and reflects the requirements of the NCI SBIR and RWJF programs.) Many tools have an individual user feedback mechanism, such as a “comments” box or phone line. Developers report using the feedback to modify the tools on an ongoing basis.
The Federal Government emerged as significant, both as a funder of developmental or evaluation research and as a dissemination partner or purchaser of e-health tools. Some of the leading research and development on consumer/patient e-health (notably, on personal health records and disease management) is being done by Government agencies, including the U.S. Department of Veterans Affairs and the Centers for Medicaid & Medicare Services (CMS). In addition, at least 15 of the 40 tools have Government funding (usually research-related), in addition to several that are purchased by Medicare or Medicaid for enrollee use. As noted, several developers indicated that they see CMS as a potential purchaser of their tools. The need for Federal and foundation research funding can also be inferred from the fact that the only tools being rigorously evaluated are those with grant funding. Several interviewees mentioned that they had applied for research funding but did not receive it, and thus were unable to do the desired level of evaluation.
Payers, Purchasers, and Dissemination Partners
The largest number of e-health tool developers (21) say they see health plans or insurers, including Medicare and Medicaid, as “ultimate purchasers or stakeholders” for their products (consumers/patients are always regarded as the “ultimate end-users”). To evaluate and demonstrate their products’ return on investment for purchasers, many tool developers conduct cost-benefit studies to compare health service utilization, absenteeism, or other variables with the cost of distributing the tool.
As noted above, 37 of the 40 tools are disseminated through various dissemination partners, a mechanism used for both for-profit and not-for-profit tools. The partners are in the following categories (with some developers partnering with several):
In these cases, consumers gain access to and experience the tools as a function of their relationship to the distributing entity (e.g., as employees, health plan members, and constituents of a national health organization). Some distribution partners purchase or license the tools and provide them to customers, employees, or members; others distribute the tools as part of healthcare or public health services. Some developers produce both direct-to-consumer and restricted-access versions of their products, with the latter offering more interactive services that are customized to the distribution partner’s specifications.
__ Web site
__ Peer-reviewed literature
__ Self-published report or other non-peer-reviewed document
__ Other (specify) ____________________________
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