HealthInsite: a gateway to reliable health information

Abstract

Introduction

Dependable, up-to-date information is crucial in today's world - particularly when it comes to health information. The HealthInsite Internet facility will play a central role in revolutionising the delivery of such information to Australian consumers.

As Internet technologies advance and become more widespread, a large number of Australians are turning to the Internet as a source of health information. While the Net provides a massive amount of useful information to consumers, it also provides access to information with questionable credibility and relevance.

Funded under the 1998-99 Federal Budget, HealthInsite aims to provide Australians with the most current and reliable information from reputable leaders in the national and international health fields using the Internet as the delivery mechanism.

HealthInsite is more than an Internet site - it is a web-based facility, with navigational and search infrastructure, providing links to reliable and relevant health information. Content will be provided through 'Information Partnerships' established between HealthInsite and peak health organisations, government agencies and educational institutions. All content accessed via HealthInsite will be clearly identified with its source and branded with the HealthInsite logo.

HealthInsite supports the Government's health policies by allowing health information to be provided to all Australians either directly or through health professionals and service providers. HealthInsite is:

• based on the latest advances in technology
• a new approach to information management and communication
• in line with the Government's strategy of delivering services via the Internet by 2001.

Issues identified during pilot development phase

The development of a pilot version of HealthInsite highlighted some of the issues that the service would have to deal with. An important issue was reassuring key stakeholders that the legal and content issues were being taken seriously and researched in detail. The credibility of the project team was at stake as much as the credibility of HealthInsite itself. The major issues relate to the quality and reliability of the content being accessed through the facility. They include:

Legal issues including

• disclaimers and copyright
• liability for information accessed through HealthInsite links to other sites.

Quality issues including

• access to commercial sites and information
• reliance on 'evidence-based' information
• establishment of standards and selection criteria
• management of and resourcing for the project.

The resolution of these issues involves a combination of the use of appropriate disclaimers and the development of policies and standards for the facility. The endorsement of the proposed policies and standards required the implementation of a management model satisfying the need to maintain credibility and secure the appropriate level of support from key stakeholders.

This paper will discuss the issues, and HealthInsite's approach to managing these issues in developing a service for Australian consumers.

Disclaimers

The growth in the number of new Internet sites aspiring to become 'authoritative' sources for high-quality health information, support and interaction has lead to a whole new area of study within health informatics and is already a common topic of discussion between patients and clinicians. It has been suggested that clinicians themselves need to be developing Internet information for patients[1]. The liability issues which exist for an organisation depend on its role in the health industry, e.g. government or medical professional, and on the aim of the service being provided. A disclaimer is an important step in addressing this issue. In the case of health information, a disclaimer should describe the limitations, purpose, scope, authority, and currency of the information and should emphasise that the content is general health information and not to be construed as medical advice [2].

It is also common practice for health sites to include statements that users should treat the information as only that, and that they should seek professional advice for their specific situations. As yet, the notion that medical advice or opinions via the Internet do not constititute the practice of medicine have not been tested [2]; nor has the notion of liability for the consequences of the use of information linked to.

The essence of liability for the Department of Health and Aged Care is that it would be liable in a negligence action, should it fail to exercise reasonable care. Should the matter come before a court, the court will determine what is reasonable in the circumstances - so it is essential that the Department develop, maintain and observe a set of procedures, which can be produced as evidence. To fulfil its duty of care obligation, the Department must:

• make every effort to validate the quality and the source of information on HealthInsite
• ensure the currency of content through formal review processes
• publish the method and criteria for content and source validation
• publish the information within HealthInsite in line with departmental functions.

Copyright

Copyright concerns, especially for electronic sources, arise partly from the ease with which information can be copied and presented in another format. It is not uncommon to find parts of copyright information re-used on other sites, without acknowledgment, or with the copyright attributed to the host organisation rather than the original publisher. Another common practice that occurs is the automatic updating of the copyright date of an Internet resource as a result of minor administrative changes. This creates an issue for consumers trying to assess the source and reliability of the information as well as confusing the issue of copyright ownership.

Linking liability

The World Wide Web is exactly what its name implies - a web of information and services crossing national boundaries. The web exists to link information. When sites link to content on other sites, there is an implication that the content on the linked site is relevant in some way to that on the linking site. For some sites, there is a clearly stated endorsement of the linked content; for others the endorsement might only be implied. However, in the health information area, it is increasingly common for disclaimers to be used to explain that no endorsement should be implied by links to other information. In the print publishing world, references are considered essential to establish the source of statements; in the Internet world links (or references that are also links) are usually to the actual information, not just the citation.

Where and when a user enters a site creates specific issues surrounding disclaimer and copyright access. With deep linking, users by-pass the front page of a site where the disclaimer information is usually displayed. Under common law customers must be able to acquaint themselves with any legal conditions before entering the 'premises' e.g. liability notices at the entrance to car parks.

HealthInsite's value-add is that most links are 'deep', taking the consumer to specific, relevant pages within Partner sites. Partners will also use deep linking to connect to specific information on HealthInsite and some of HealthInsite's content partners do not have links to their disclaimer off every page.

Commercial sites
The profit motive can influence the provision of information. Manufacturers and sellers of health products are very active on the Internet, often taking advantage of its international scope to expand their markets and bypass national regulatory requirements. Advertising under the guise of sponsorship or information provision can difficult to recognise, especially in an environment where anyone can publish. Commercial organisations are more likely to be in a position to fund the development of Internet-based information, or may be looking for ways to link their products to information services. On the other hand, non-commercial associations and peak bodies usually have fewer resources to fund the use of new technology.

Alternatively, commercial publishing organisations may be aiming to support their Internet services with profits from non-Internet versions, and will often publish only older versions online, keeping the current versions of information for sale only through more traditional means[3].

The Health on the Net (HON) Code principles, especially principles 7 and 8, specifically address issues relating to commercial organisations and advertising and their association with health information[4].

Evidence-based information

The influence of an increased emphasis on 'evidence-based' medicine has been translated into an emphasis on evidence in development of health policy. The Department of Health and Aged Care Corporate Plan for 1998-1999 includes the statement that the department will "through the HealthInsite Internet project, provide access to reputable and timely information on health issues, services, policies and research in"[5]. Is 'evidence-based' the same as 'reputable and timely'? Is it the same as 'reliable'? What can we promise?

The difficulty is in defining 'evidence-based'. Even if we can define it, there are potential differences between a definition of credibility, reliability and 'evidence-based' for the HealthInsite facility and that of the consumer's perception, notwithstanding that HealthInsite is a consumer-focussed service. Various reports on the use of evidence in assessing health practices suggest that even amongst well-accepted conventional treatments as little as 20% are 'evidence-based'.

The shortest explanation is that 'evidence-based' medicine involves a 'hierarchy of evidence'. The complete definition is much more complex and includes the stages that must be worked through to establish that a practice or piece of information is 'evidence-based'[6]. Selection criteria developed by the Health Information Technology Institute include a criterion that information provided should reflect the principles of evidence-based medicine[7].

There are significant risks associated with ensuring that information selected and created for HealthInsite is 'evidence-based'. To add to those risks, participants in HealthInsite focus groups have expressed their desire to have access to information on 'alternative' health practices, particularly credible information that would assist in making decisions about the use of alternative medicines and treatments. There is the likelihood that 'alternative' health practices would not meet the department's and other stakeholder's perceptions of what constitutes 'evidence-based' practice. Added to that is the difficulty of selecting 'experts' who are perceived as such by both their peers and consumers, especially in 'alternative' health practice. For conventional health areas there are well established and accepted methods for appointing experts for various purposes; this may not be the case for 'alternative' health practitioners, making the selection of experts in those areas more difficult and controversial.

Consumers want to have access to information from credible sources and participants in HealthInsite focus groups tended to assume that certain sources, such as identified, reputable hospital sites, are highly credible and should be accessible, while other sites, which might be considered highly credible by the medical establishment, were not necessarily so regarded by consumers.

The Cochrane Collaboration suggests that, in making decisions about health, information from clinical trials needs to be combined with clinician's expertise and patient expertise and knowledge of their own health situation[6]. The UK National Health Service intends to put in place arrangements to assist the general public in accessing 'consistent, comprehensive, comprehensible and up-to-date advice from accredited sources on a wide range of health related issues'[8].

The HealthInsite content development process and management model discussed later will be used to address these issues.

Standards and selection criteria

Given the importance of the legal and quality issues, is it possible to evaluate Internet information and establish standards that can resolve them? There needs to some benefit, such as better health outcomes, for evaluating sites/information[9].

Internet information is often produced by groups, in multiple formats, frequently modified, linked, dynamic, and complex. The types of meta-information, for example, publication date, usually included in print publications is often not included in Internet publications/sites, making authentication more difficult[3]. There is a perception that Internet information is different from paper-based information because of the ease of publication and lack of review processes. As a result, the provider of the information may be more open to legal challenge. Health information is higher risk than most other information in that the use of misleading information may be potentially dangerous and lead to legal liability.

GVUs Tenth WWW User Survey shows 36% of respondents seek health information once a month or more[10]. Those users need reliable web evaluation services that can be trusted. Any selection criteria should consider issues such as authentication, disclosure, structure and functions, as well as the quality of the content itself. To achieve this, collaboration is needed between information professionals, content developers, and system developers[11], and subject experts; such cooperation could also help to counter the perception that Internet information is less likely to be high quality.

Some existing Internet health information services, and organisations concerned with developing standards for them, have published guidelines and selection principles to assist both consumers and content developers.

The aim of the 'Criteria for Assessing the Quality of Health Information on the Internet' white paper was to develop criteria to assess information and educate consumers, content providers and policymakers to improve the quality of health information available on the Internet and assess the effectiveness of the use of the criteria. The criteria are grouped into categories: credibility, content, disclosure, links, design, interactivity and caveats. The white paper suggests that sites should inform users of the sponsor, purpose and use of gathered information. In initial feedback from users the top ten criteria are source, disclosure, accuracy, original source stated, hierarchy of evidence, relevance/utility, disclaimer, links, and review process[12].

In a survey reported in Searcher in February this year, twelve Internet evaluation sites reviewed showed a lack of standard evaluation criteria, but criteria which appeared in most included: content, design/presentation/format, update frequency, audience, currency, rating system, authority, availability, usefulness, accessibility, scope and cost[11]. The Journal of the American Medical Association suggests source, funding, updating and attribution as factors for consumer's and professionals to consider when evaluating Internet information[13]. HON code principles cover: author credentials, modification date, confidentiality, source, funding and advertising policies. The Code aims to assist in identifying reliable information and to help information providers ensure that they provide quality information[4]. Eysenbach and Diepgen have suggested a possible role of ratings systems such as medPICS for use by authors and /or independent third parties[14] to try to overcome this problem, although the use of PICS has problems of its own.

The HealthInsite Publishing Standards have been developed to assist information providers in developing sites that are compatible with HealthInsite and to help users by providing some consistency in presentation between information coming from different sources.

This variety in current guidelines and standards suggests that different criteria are needed depending on the purpose and audience of the site or gateway.

Management and resources

Within Australia, governments and other organisations are working to provide access via the Internet to information in similar subject areas. While this means that there is a large quantity of information available in some areas, it also causes confusion for users, about which of these multiple resources are most useful for their individual needs. It also means that money and time are being duplicated because they are being used to produce similar results. Agreements between the organisations involved could be used to produce cooperative content development rather than competition, and leave more resources for the development of specific local services information and/or new topics. It is also possible that cooperative arrangements could be used to ensure that developments are complementary rather than duplicated; the Commonwealth working with the states for the development of similar services could ensure that funding is used most effectively to expand the range of services instead of duplicating development.

The development of an evaluated Internet service such as HealthInsite is very labour intensive. Content development will be ongoing and expanding, as new topics are added. A combination of Commonwealth and state government resources, external organisations' resources and automation are needed to provide a broad-ranging, high quality service. Possibilities for managing the service range from directive, in which the Commonwealth assumes complete responsibility for policy and resourcing, to a fully collaborative model, with key stakeholders sharing responsibility for policy and content development. The interim model selected for the development phase of HealthInsite will be discussed in this paper, along with the content development process which has been designed to ensure the availability of high quality, reliable information.

Similar services are also being developed in areas related to health, such as education. Again, cooperative arrangements are being used to ensure that, for example, metadata standards, are consistently applied and that partners for both services are not faced with having to provide metadata to meet different standards or implementations of the same standard. The Australian Government Locator Service aims to provide a framework for metadata development that will ensure some degree of consistency in the way government agencies (at all levels) apply metadata. The Commonwealth government's AusInfo (which replaced the Australian Government Publishing Service) has also recently released the Guidelines for Commonwealth information published in electronic formats, which aims to establish guidelines for the production and dissemination of government information and to develop best practice management tools for electronic publishing[15].

How HealthInsite will resolve the issues

HealthInsite has been developed with the above issues in mind and aims to resolve them through:

• providing an intuitive information architecture
• following legal advice on copyright, linking liability
• establishing a content development process with a strong emphasis on quality assurance, and
• establishing a management model that supports the ongoing development and management of both the technical infrastructure and content development process.

Information architecture

The site will provide users with a single entry point which provides 'safe surfing' through a network of credible and relevant information.

The HealthInsite homepage provides four information paths:

• Life Events put health information into a broader context. The Life Events access path clusters health information around those events that impact on life. The Life Event of pregnancy, for example, will link to related information on nutrition, birth and parenting.
• Health topics break HealthInsite's content into topics and sub-topics. This makes it easy for users to find the information they need. Topics and sub-topics have related links to Expert Pages and Life Events.
• Expert views offer an expert overview of a specific topic, such as childhood asthma or cancer research. Subject experts will add value to the facility by identifying key information and important new developments.
• General search provides the freedom to search all HealthInsite information using keywords, but has a special advantage over a normal Internet search as the user will be 'surfing' in a safe environment - limited to identified authoritative content.

Users will have the option to enrol with HealthInsite which will enable them to subscribe to information and tailor the site to meet their personal requirements. Users can mark specific items within HealthInsite so that those items will be presented as part of a personalised list of resources for future access. They always have the option to view the non-customised version as well.

An important feature of the management of information for HealthInsite, is that most information is retained on the sites of the partners (content providers), with metadata for that information being gathered or created and stored in the HealthInsite database. To help users find that information, contextual pages explain what information can be found in each area, provide explicit links to the most important information or sites related to that area, provide links to subtopics, and list all 'approved' HealthInsite partner information related to that area. In addition, related subjects, life events, expert pages and news items are accessible through links down the right hand side of the contextual page. Contextual pages and their associated lists of related information are assembled automatically when the page is requested by the user, so information presented is completely up-to-date. Where there may be several content items on the same topic from a number of different partners, links to all are displayed, along with publisher information, so that users can select which item is most likely to suit their needs. For example, a user trying to find out about child health services will be able to select the link to the information most likely to be relevant for the area in which they live.

Legal issues

HealthInsite has and is addressing the issues outlined. Although HealthInsite cannot mitigate against vexatious litigants, there are steps that can be taken to reduce its legal exposure by:

• Meeting its obligations under 'duty of care' requirements
• providing copyright and disclaimer notices which denote terms and conditions of use
• obtaining a signed licence to use third party information within HealthInsite.

For additional legal protection, HealthInsite will publish a 'disclaimer' which states that the material provided within HealthInsite should be used as 'information only', not for the purpose of self diagnosis, and that any claims as a result of misuse are not the Department's responsibility. This disclaimer must reflect the Department's leading role or it will fail to offer protection.

Deep linking issues, discussed earlier in this paper, will be dealt with by making the disclaimer and copyright notices accessible from every HealthInsite page. All content partners will be required to meet certain legal criteria, such as the provision of access to disclaimer and copyright information from all levels.

HealthInsite standards and guidelines will also be published on the site, and remote access to the authoring modules will be provided to authorised users to develop and maintain areas for which they are responsible.

Content development process

The content provision model for this type of web site is distributed across multiple organisations, and based on collaboration. The provision of content across a wide range of topics, in appropriate depth, and including the coverage of topics such as local services that are the responsibility of other organisations, is best approached using a partnership model. This will require a planned approach across Federal, State, peak body and other health sector organisations for the provision of information and services to consumers.

HealthInsite is more than just a list of links because HealthInsite:

• Rates information before selection;
• Holds a selection of the best content that can be found on a topic;
• Presents information in a logically laid out manner;
• Provides context information to assist the consumer to understand the information;
• Includes expert commentary on specific topics;
• Covers a wide range of health sector services and organisations within the facility.

The process to achieve this involves:

Topic selection
The topics to be covered by HealthInsite and the priority assigned to each topic will be determined in accordance with the overall HealthInsite objectives.

Topic plan
Once a topic has adequate priority to proceed, a Plan for the topic needs to be prepared. This will indicate:

• The objectives for the topic;
• The topic architecture;
• The audience;
• Any special look and feel issues

The topic architecture describes the layout of the topic. This includes related topics, relationships within the information, and the access path selection.

The topic plan requirements are the key input to the content selection and assessment process.

Content identification
Suitable content will be identified from the topic plan requirements and general knowledge of the content packager, members of the Editorial Board and recognised experts in the field. Other information can be identified by techniques such as web searching or spidering to identify new content.

The outcome is a list of content to be assessed against the topic strategy.

Content selection and item QA
The match of content to the topic plan requirements is a key element in the creative process for a topic. As items are selected they should be assessed for quality to ensure that they meet HealthInsite standards.

The outcome of this step is a list of:

• Links to suitable external content;
• Appropriate internal content;
• Reviewed and rejected content for the topic (but suitable for general access through searching HealthInsite)
• Reviewed and rejected content - unsuitable for HealthInsite.

Collection QA
The items in the collection have been reviewed for quality on an individual basis. This step is a control step to review the quality of the collection as a whole. It is important to ensure that the collection is appropriate to the topic objectives before continuing on with the process.

Gap analysis and action plan
The review of the collection of content may show significant gaps in coverage of the topic. The Action Plan defines the method for filling the gaps identified.

Context update plan
Context is the value-add from HealthInsite that helps consumers find and understand the meaning of the information referenced by HealthInsite.

Classification
The Classification Process is designed to categorise information in HealthInsite so that information searches are more effective, and automatic content retrieval can function. The classification process also indicates quality levels.

Auto-extraction of information
HealthInsite will publish the HealthInsite standards for metadata and provide advice for lead agencies and authors amongst HealthInsite partners. These standards will keep in line with Australian Federal and International standards through liaison. Authors and publishers that create output in the HealthInsite arena will be encouraged to adhere to these standards.

HealthInsite database

Metadata on evaluated content is stored in the HealthInsite 'indexed and reviewed' collection. User searches only take place against resources identified in this database. Experts from lead agencies may also add material to this database. There are a number of document statuses which are indicated by flags within the HealthInsite database:

• Unchecked - The document URL is stored in HI database but the document is not available to any search facility. This would be the status of a document from an external site that has been nominated for HealthInsite but has not yet been examined.
• Rejected - This document has been found to be unsuitable for HealthInsite. The URL is retained to avoid the need to re-check the document in future.
• Suitable - The document originates from a Partner site (and is therefore automatically deemed to be suitable) or the document originates from an external site and has been evaluated for suitability and accepted. This document is made available for indexing by the free-text search engine, but cannot be accessed through the Topics (and similar) pages.
• Checked - This document has been found Suitable, and has been examined but found not to be of sufficient merit for Approval. The Checked status is the same as suitable, but avoids the document having to be examined again for approval.
• Approved - The document has been found to be of sufficient merit to permit full access. This document is accessible through Topics (and similar) pages.
• Catalogued - The document has been thoroughly checked and possesses HI metadata. The document has been found to be of sufficient merit to permit full access. This document is accessible through Topics (and similar) pages. The metadata affects search ranking.

Management model

The interim management model for Phase 2 of HealthInsite is a directive-collaborative one, with the Commonwealth convening a steering committee and an editorial committee, comprised of experts and representatives of stakeholder organisations. The Commonwealth also provides resources for editor, publishing and technical support. The model utilises the concept of 'lead agencies' that are appointed to manage the development of specific topic areas. Roles of the various groups in the model are designed to cover all of the processes necessary to establish policy and ensure acceptance of HealthInsite by both health professionals and consumers, while avoiding or minimising exposure to the legal issues.

The Chief Editor, Technical Support and Production Team resources are provided by the Commonwealth; Steering Committee, Editorial Board, and lead agencies are drawn from outside the Department of Health and Aged Care, but are supported by the department. In addition, experts in specific topic areas will be appointed to provide in-depth advice and opinion on their area of expertise - appointment of experts to be endorsed by the steering committee.

Remaining issues

Finally, some of the issues mentioned in the earlier discussion, have not been resolved yet. The focus testing that is continuing through the pilot phase of the project should provide some of the answers; other issues will be continually assessed after the launch of the full service to try to find solutions that will meet the needs of HealthInsite's users and partners in the future.

Some of the remaining questions are:

• What if consumers want information that appears to fall outside the bounds established by the selection criteria?
• How will HealthInsite manage a balance between medical, public health and consumer views - not always/often the same.
• What is the most effective way to manage the inclusion of overseas information to improve the comprehensiveness of the service without overloading the content evaluation process? Is it possible to establish arrangements with overseas health gateway services for this purpose?
• How well will the interim management model work, and what modifications might be needed following results of pilot and early stages of full service?
• Will external organisation be able or willing to commit resources to HealthInsite, when the benefits may be less tangible to them?
• Will the creation and gathering of metadata be good enough to support the searching and navigation requirements of HealthInsite as the amount of information grows?

Conclusion

Some of the issues surrounding access to health information on the Internet are the same as for providing information in other formats; some are related to the Internet as a medium; and others are related to both the facts and the perceptions that health information is different from other information. HealthInsite is attempting to deal with all of the issues that are or might be important to its viability and to its aim of providing access to reliable health information for Australians. How well it does that will depend not just on the content development process, infrastructure and management of the service, but on ability to secure the commitment of its partners to the same aims.

References

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