An Evidence-Based
Approach
Introduction:
Evaluation of IHC
Consumers & IHC
Evaluation
Developers &
IHC Evaluation
Policy Issues Relevant
to IHC
Health Care
Providers, Purchasers & IHC
SciPICH Final
Report
|
|
An Evidence-Based Approach to Interactive
Health Communication: A Challenge to Medicine in the Information Age
Authors: Thomas N. Robinson, MD, MPH; Kevin Patrick, MD, MS; Thomas R. Eng, VMD, MPH; and David Gustafson, PhD; for the Science Panel on Interactive Communication and Health
Citation: JAMA. 1998; 280:1264-1269
Full Text Article - October 14,
1998
Objective.To examine the current
status of interactive health communication (IHC) and propose evidence-based approaches to
improve the quality of such applications.
Participants.The Science Panel on Interactive Communication and
Health, a 14-member, nonfederal panel with expertise in clinical medicine and nursing,
public health, media and instructional design, health systems engineering, decision
sciences, computer and communication technologies, and health communication, convened by
the Office of Disease Prevention and Health Promotion, US Department of Health and Human
Services.
Evidence.Published studies, online resources, expert panel
opinions, and opinions from outside experts in fields related to IHC.
Consensus Process.The panel met 9 times during more than 2 years.
Government agencies and private-sector experts provided review and feedback on the panel's
work.
Conclusions.Interactive health communication applications have
great potential to improve health, but they may also cause harm. To date, few applications
have been adequately evaluated. Physicians and other health professionals should promote
and participate in an evidence-based approach to the development and diffusion of IHC
applications and endorse efforts to rigorously evaluate the safety, quality, and utility
of these resources. A standardized reporting template is proposed to help developers and
evaluators of IHC applications conduct evaluations and disclose their results and to help
clinicians, purchasers, and consumers judge the quality of IHC applications.
JAMA. 1998;280:1264-1269
Advances in telecommunications and computer technologies,
unimaginable a generation ago, have become routine. These technologies are changing the
nature of interactions between individuals and health professionals. The following
analysis results from the efforts of the Science Panel on Interactive Communication and
Health (SciPICH), convened by the Office of Disease Prevention and Health Promotion of the
US Department of Health and Human Services. The SciPICH includes experts in clinical
medicine and nursing, public health, media and instructional design, health systems
engineering, decision sciences, computer and communication technologies, and health
communication. The mandate of the panel is to clarify major medical and public health
issues raised by the rapidly growing field of communication technology. The SciPICH is
focusing its attention on interactive health communication (IHC), which is defined as the
interaction of an individualconsumer, patient, caregiver, or professionalwith
or through an electronic device or communication technology to access or transmit health
information or to receive guidance and support on a health-related issue.
For the purposes of this article, this definition does not include electronic applications
that focus exclusively on administrative, financial, or clinical data, such as electronic
medical records, dedicated telemedicine applications, or expert clinical decision/support
systems for physicians. Discussions of these areas are available elsewhere.[1-3]
This article focuses on IHC applications, that is, the operational communication and
computer software programs or modules geared toward users (ie, individuals who use IHC
applications) rather than the hardware and infrastructure technologies that run or
disseminate these applications.
Because IHC applications have the potential both to improve health and to cause harm,
there is an opportunity and a professional responsibility for physicians and other health
professionals to help ensure the quality, safety, and effectiveness of IHC applications.
As an example of one of the ways this can be accomplished, the SciPICH proposes an
Evaluation Reporting Template to promote standardized reporting of evaluations of IHC
applications.
Benefits and Risks of Interactive Health Communication
Interactive media are changing the nature of health communication. Some health
communication strategies that use "old" media, including radio, television, and
printed text and pictures, have been successful in conveying information and promoting
healthful behaviors.[4,5] New media, however, have potential advantages
for health communication efforts including the following:
1. Improved opportunity to find[6] information "tailored" to
the specific needs or characteristics of individuals or groups of users. The degree of
interactivity may be limited (eg, selecting an option for specialized information) or
involve a series of complicated interactions over long intervals of time (eg, monitoring
of a chronic health condition or individual risk behaviors);
2. Improved capabilities of various media[6] to be combined with text,
audio, and visuals and of matching specific media to the particular purposes of the
interention or the learning styles of users;
3. Increased possibility for users to remain anonymous[7] by providing
access to sensitive information that people may be uncomfortable acquiring in a public
forum or during a face-to-face discussion.[8] Computer-based interfaces
also can increase a participant's willingness to engage in frank discussions about health
status, behavioral risks,[9] and fears and uncertainties[10];
4. Increased access to information and support on demand,[6,7] because
these resources often can be used at any time and from numerous locations;
5. Increased opportunity for users to interact with health professionals or to find
support from others similarly situated through the use of networking technologies,[6-8,11] such as e-mail, which enables direct
communication between individuals despite distance or structural barriers;
6. Enhanced ability for widespread dissemination and for keeping content or functions
current.[7] This can be accomplished for an expanding audience at a
limited incremental cost once the necessary hardware infrastructure is in place. As these
technologies become pervasive in both public and private settings, more people, including
traditionally underserved persons (eg, rural, poor, disabled), may gain access to
information that has been out of reach.[12]
The IHC applications include 6 specific functions, which are as follows:
1. Relay information: They can provide general or individualized health information.[13,14] Examples of these technologies include Web sites, online services,
and telephone-based applications that use interactive voice response and fax-back
technology.[15,16]
2. Enable informed decision making: Decision/support applications can foster communication
among health care professionals and patients by helping patients understand prevention,
diagnosis, or management of a health condition.[17,18] Some applications
assist individuals with health care decisions, such as selecting a health care
professional or a health management plan.[19,20] More sophisticated
applications assist individuals in thinking through and selecting options that are
consistent with their desired health outcomes.[21-23]
3. Promote healthful behaviors: Some applications promote and sustain healthful behaviors
not only on an individual level but also on a community-wide level. Such applications
include risk assessment and health promotion modules typically based on theories of
behavioral change.[8,14,24,25]
4. Promote peer information exchange and emotional support: An increasing number of
applications enable persons to discuss their specific health conditions, needs, or
perspectives with others who have similar concerns. Through "virtual support
communities," which are available on a wide array of medical conditions, participants
may share information and provide peer and emotional support[26-34] that
typically cannot be obtained from health care professionals. This phenomenon may reflect
people's tendency toward socialization and is one of the most common health-related uses
of the Internet.[26,35] Participants in such support
networks include consumers, patients, health professionals, and other caregivers.[26,36]
5. Promote self-care: Some applications help users manage health problems without direct
intervention from a health care professional and help supplement existing services.[8,37] Some consumers using these resources may have
limited access to a health care professional, have a particular interest in alternative
medicine, or want information on therapies that may not be available from their health
care provider.
6. Manage demand for health services: This function of IHC, increasingly being used by
insurers, health plans, and employers,[39] provides answers to specific
health questions through computer-assisted telephone advice systems, interactive voice
response systems, and/or electronic consultation with health care advisers.[38]
Providing specific information, tools, and other resources to support wellness, self-care,
and self-efficacy may enhance use of effective health care services and reduce unnecessary
services.[8,40,41] Exchange of patient-collected data
also is a component of some of these demand management programs.
Potential for Harm
Although early IHC applications were limited primarily to academic or research
institutions, many systems are now directly available to the public, especially through
the Internet.[15,42] The growing use of IHC
applications should raise legitimate questions about their quality, cost, and potential to
cause harm.[43,44] Even though some health communication interventions
have been shown to be efficacious,[8,14,24,25,29,38,45] minimal
research has been reported to date about the risks associated with their widespread use.
Inaccurate or inappropriate health information and/or poorly designed applications can
result in harmful outcomes, such as inappropriate treatment or delays in seeking necessary
medical care.[46-52] Potentially misleading claims for medical products
are endemic on the Internet.[53] Within a few hours, a Federal Trade
Commission initiative identified more than 400 Web sites and Usenet newsgroups that
contained potentially false or deceptive advertising claims for products or services for 6
diseases.[54] Similarly, although online support groups have facilitated
informational sharing and support among millions of users, they are also susceptible to
the proliferation of incorrect or inappropriate information.[55,56]
Moreover, misleading information can damage people's trust in their health care clinicians
and prescribed treatments. Although such risks exist with most media, IHC applications
must be held to a high standard because emerging research shows that people put more
credibility in information from computers than from television and other media.[57]
Furthermore, privacy and confidentiality may be breached. A user may have little knowledge
or control over what happens to personal information he or she enters into an IHC
application; it may be sold, used to discriminate against the user, or applied to a
personalized marketing effort.
Many IHC applications do not have consistent standards of evaluation to enable users to
compare one with another or with less expensive technologies. As with other health and
medical technologies deployed prior to evidence about whether or not they work, we may be
on the threshold of an era in which considerable investment in these tools precedes
knowledge of their effectiveness or their impact on costs. Without necessary feedback,
this is likely to result in wasted resources and delayed innovation. There is concern
about the ultimate impact that the widespread deployment of IHC applications will have on
the quality of health care, the clinician-patient relationship, the organization of
medical systems, and the health of the public.[17,58-61]
Toward an Evidence-Based Approach to IHC
Many aspects of the development, evaluation, and dissemination of IHC applications are in
need of input and guidance from the scientific and professional communities to achieve an
optimal future for these technologies.[61,62,63] Reliable and valid
evaluation guidelines and tools to assess and improve IHC applications need to be
developed and disseminated.[59] For example, many organizations have proposed rating
systems, guidance, or criteria for assessing the quality of health-related
"sites" on the World Wide Web.[59,64-68]
Most of the Web site rating systems in use, however, are cursory and inadequate for the
task.[64] Although a particular Web site may have received awards or
high ratings, such accolades may not indicate high quality. It is unknown how many
health-related Web sites or other IHC applications have been independently assessed or how
many have internal quality assurance and improvement policies. The current challenges in
evaluating IHC applications include the following: (1) the media and infrastructure (eg,
Internet, cable television, wireless technologies) that underlie these tools are in a
dynamic state; (2) the applications themselves may be highly fluid because of the relative
ease of changing content and function; (3) many IHC applications are used in situations in
which a variety of influences on health outcomes exist, few of which are subject to easy
assessment or experimental controls; (4) developers of IHC applications often lack
familiarity with evaluation methods and tools; and (5) developers of IHC applications
often believe that evaluation will delay development, increase "front-end"
costs, and have limited impact on sales. Addressing these issues requires additional
research to improve monitoring of quality and effectiveness of newer IHC technologies (eg,
automated updating of Web sites) and policy and educational initiatives to promote
evaluation. At the same time, existing evaluation methods can and should be adapted to
assess IHC.
Proposed Evaluation Reporting Template
The SciPICH proposes an Evaluation Reporting Template for Interactive Health Communication
Applications, which is based on the rationale
that all applications should undergo some level of evaluation and that the nature and
results of such evaluations should be available to potential users and purchasers of the
application. The template is designed to assist health professionals, consumers, and
purchasers in judging the appropriateness of a given IHC application for their needs and,
perhaps, compare one application with another. A standardized approach to planning and
reporting evaluations can also help IHC developers explore and clarify expectations of
potential purchasers and users. Finally, the template can help address the consideration
of commonly used, but sometimes difficult to define, concepts such as the relevance,
efficiency, cost-effectiveness, and practicality of a given application. The template is
designed to apply to essentially all IHC applications, regardless of the specific
technologies involved, communication strategies used, or stated goal(s). The background
for evidence-based approaches to the development and diffusion of IHC applications is
addressed in detail elsewhere[69-72] and also will be addressed on the
SciPICH Web site (URL: www.scipich.org).
The template is proposed in a spirit similar to the call for structured abstracts and for
standardized reporting of results of randomized controlled trials as endorsed and required
by JAMA and other journals.[73-76] However, unlike journal standards,
what we propose is voluntary. All IHC stakeholders can benefit from a voluntary standard
of reporting that promotes evaluation. This template and future generations of it can (1)
assist developers as they plan, conduct, and report the results of their evaluations and,
ultimately, help prevent the development of flawed applications and wasted resources; (2)
help users determine which applications are most likely to be of benefit; (3) assist
clinicians in selecting relevant applications for their patients; and (4) help purchasers
and policymakers focus on the best IHC applications and strategies for investment and
dissemination.
Methods
We derived our template through an ongoing consensus process. The SciPICH considered
findings of published studies, online resources, and opinions of outside experts to
construct an initial list. This list was formally presented for feedback from developers
of IHC applications, health care industry representatives, patients, and patient advocates
who attended the Partnerships for Networked Consumer Health Information conference in
Rancho Mirage, Calif, on May 14, 1996. During 8 additional panel meetings over the
following 2 years, feedback and suggestions for improvement were elicited from invited
experts and liaisons representing developers of IHC applications, government agencies,
academic researchers, health care organizations, health care consumers, and consumer
advocates and comprised more than 24 federal agencies and offices and 25 nonfederal or
private-sector organizations. In addition, the work of the SciPICH was presented to
audiences at 3 national conferences to obtain feedback and to ensure that the template was
comprehensive and general enough to accommodate various forms of IHC. Nine developers of
IHC applications completed the template for the 1998 Partnerships for Networked Consumer
Health Information Technology Showcase and Games, held in Washington, DC, on April 28,
1998, and in Philadelphia, Pa, from May 27 to May 28, 1998. The developers demonstrated
that the templates could be completed appropriately and correctly among various
disciplines. Before completing the current template, version 1.0, we received additional
feedback and made further revisions.
The IHC Template
The template is divided into 4 sections. The first section focuses on identification of
the developer(s), the source(s) of funding for the application, the purpose of the
application, its intended audience(s), technical requirements, and issues of
confidentialitya particular concern among consumers and consumer advocates.
The second section focuses on the results of formative and process evaluations, as
contributors to application design and development. These items elicit information to help
potential users and purchasers judge whether the content is valid, whether the application
addresses the user's needs, and whether the application was sufficiently tested so that
its intended functions are ensured. In addition to providing descriptive information, this
section attempts to encourage disclosure of whether and how potential users and other
"experts" were involved in the application's development and how extensively the
application was tested prior to release.
The third section focuses on the results of any outcome evaluations performed. The listed
outcomes include those most commonly encountered, ranging from whether users like the
application to whether it produces changes in morbidity or mortality, reduced costs, or
organizational change. Potential outcomes are broadly defined because individual
developers, users, and purchasers may have different needs and expectations. For example,
while 1 developer or potential purchaser may be interested in an application that improves
management of a specific chronic disease symptoms, another may be solely interested in
improving patient satisfaction. The SciPICH seeks to provide a tool to promote evaluation
and evaluation reporting without imposing any particular opinion about the most
appropriate outcomes to assess. Classifications of evaluation designs from the US
Preventive Services Task Force[77] are included to provide information
relevant to the internal validity of the results (ie, the strength of evidence that the
observed results are due to the intervention) and descriptions of samples are included to
provide information relevant to the ability to generalize results. These considerations
may be new to some IHC users or developers but are included to promote a standard that is
evidence based rather than opinion based.
The final section of the template focuses on information about evaluators and funding to
disclose potential biases or conflicts of interest relevant to the evaluation. The notion
of disclosing conflicts of interest is complex[78] and while previously
discussed models may not be sufficient to ensure consumer protection, they serve as useful
precedents.The template also attempts to increase accountability for IHC applications by
encouraging the disclosure of those responsible for its design and content and for
evaluation. This concept is consistent with the recent initiative to make contributors to
scientific studies more accountable for the content of their published work.[79,80]
Since IHC applications are diverse, evaluation targets need not include all the categories
specified but should reflect the specific needs of the target audience(s) and the
developer's objectives. Similarly, randomized controlled trials are not expected for all
IHC applications to assess their immediate and long-term outcomes, since they are not
appropriate or practical for all interventions. Rather, the panel proposes a level of
evaluation that is sufficient to support the intended purposes of the application and the
resources it consumes. That is, applications that have substantial potential risk or
require a large investment should require a higher level of evidence, such as an
appropriately designed and implemented randomized controlled trial. The level of
confidence in the evidence of safety and efficacy for such interventions (eg, shared
decision support applications for serious illnesses) should be "beyond a reasonable
doubt." However, for interventions that have minimal potential risk and require few
resources (eg, Web sites that provide general information from trusted and reliable
sources), formative and process evaluations may be sufficient to provide a
"preponderance of evidence" that the application would benefit users. Developers
should be proactive and implement quality-control and evaluation methods throughout the
development process to prevent the release of ineffective or harmful applications. In
situations in which developers are unwilling to implement such controls or evaluation
methods, health professionals (as individuals and through professional organizations),
purchasers, consumers, and consumer advocates will need to exert pressure on them to do
so.
Will developers of IHC applications voluntarily disclose information about their products?
Many developers may perceive few advantages to conducting evaluations and/or disclosing
results to users or purchasers. Potential incentives to spur appropriate evaluation of all
IHC applications include increased demand among users and purchasers for evaluated
applications, awareness of the potential for harm, and the fear of possible government
regulation or legal intervention in this area. The proposed template should help guide
application developers in planning and implementing appropriate evaluation methods and in
assisting them in these voluntary efforts.
Refinement of Template
The template is a first step toward promoting appropriate evaluation and disclosure about
IHC applications and toward helping the IHC field advance with more rapid innovation and
greater benefits to individual and public health. Although the current template arose from
an extensive multi-year development effort, it will need to be updated as it is used and
as the field itself evolves. The effectiveness of the template must also be evaluated, a
process that was started recently when the template was used by developers participating
in the previously mentioned 1998 Partnerships meeting. However, rather than wait for
evaluation to be complete, the current near absence of valid information with which to
judge the safety and effectiveness of most available IHC applications mandates that the
template be widely disseminated at this time.
Comment
Interactive health communication technologies have the potential to change dramatically
both the practice of medicine and the structure of health care systems.[17,81,82] The
ultimate direction these technologies take will depend partly on the response and
participation of physicians and other health care professionals. If health care
professionals make it a priority to understand these systems, play an active role in
assessing and assuring their quality, and contribute to application development and
dissemination, outcomes will more closely approximate the ones they desire. An
evidence-based approach to the development and diffusion of IHC applications is necessary
to ensure that these technologies benefit individual and public health. A culture of
appropriate evaluation and disclosure of evaluation results is central to this process.
However, if these technologies are ignored, disparaged, or treated with benign neglect,
the quality of health information available to the public may suffer and harm may result.
As IHC applications continue to grow, there is little doubt that consumers will
increasingly turn to them for health information and support. The challenge of the next
decade will be to transcend the surface appeal of these technologies and to understand and
harness their power to improve the health of individuals and communities.
The views expressed in this article represent those of the individual authors and not
necessarily those of the US Department of Health and Human Services or any of the authors'
institutions. Stanford, Calif (Dr Robinson); Graduate School of Public
Health, San Diego State University, San Diego (Dr. Patrick); Office of Disease Prevention
and Health Promotion, US Department of Health and Human Services, Washington, DC (Dr.
Eng); and University of Wisconsin, Madison (Dr. Gustafson).
Other members and staff of the Science Panel on Interactive Communication
and Health are as follows:
- Linda Adler, MPH, MA, Interactive Technologies Initiative,
Kaiser Permanente, Oakland, California
- Farrokh Alemi, PhD, Cleveland State University, Cleveland,
Ohio
- David Ansley, Consumer Reports, Yonkers, NY
- Patricia Flatley Brennan, RN, PhD, School of Nursing and
College of Engineering, University of Wisconsin, Madison
- Molly Joel Coye, MD, MPH, The Lewin Group, Fairfax, VA
- Mary JoDeering, PhD, Office of Disease Prevention and Health
Promotion, US Department of Health and Human Services, Washington, D
- Joseph Henderson, MD, Interactive Media Laboratory,
Dartmouth Medical School, Hanover, NH
- Holly Jimison, PhD, Oregon Health Sciences University,
Portland
- Albert Mulley, Jr, MD, MPP, Massachusetts General Hospital,
Boston
- John Noell, PhD, Oregon Center for Applied Science, Inc, and
Oregon Research Institute, Eugene
- Thomas C. Reeves, PhD, University of Georgia, Athens
- Victor Strecher, PhD, MPH, University of Michigan
Comprehensive Cancer Center, Ann Arbor
Acknowledgements:
We are grateful to Paul Kim, Andy Maxfield, PhD, Anne
Restino, MA, and John Studach, MA; for their contributions to the panel's work. In
addition, we thank the liaisons to the panel, especially the following persons who offered
valuable suggestions for improving this article: Peter Abbott, MD; Loren Buhle, Jr, PhD;
Kevin Burke; David Cochran, MD; Connie Dresser, RDPH, LN; Tom Ferguson, MD; William
Harlan, MD; Nelson Hazeltine; Thomas Hertz, PhD; John Hoben; Don Kemper, MD; Craig
Locatis, PhD; Ed Madara; Rika Maeshiro, MD; Kent Murphy, MD; Gregory Pappas, MD, PhD;
Scott Ratzan, MD, MA; Samantha Scolamiero; Anna-Lisa Silvestre; Laura St. Martin, MD; and
Micaela Sullivan-Fowler.
Reprints: Mary Jo Deering, PhD, Office of Disease Prevention and Health
Promotion, US Department of Health and Human Services, 200 Independence Ave SW, Room 738G,
Washington, DC 20201.
Corresponding author: Thomas R. Eng, VMD, MPH, Office of Disease
Prevention and Health Promotion, US Department of Health and Human Services, 200
Independence Ave SW, Room 738G, Washington, DC 20201 (E-mail: teng@osophs.dhhs.gov).
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