Health policy advocacy via the Internet: Can e-democracy be made to work?
Dr. Ken Harvey, Senior Lecturer, School of Public Health, La Trobe University, k.harvey@latrobe.edu.au and
Dr. Karin Geiselhart, Post-Doctoral Research Fellow in Electronic Commerce, RMIT University, karin.geiselhart@rmit.edu.au.
This paper is based on a presentation to the Health Informatics Conference (to be held in Canberra on 29-31 July, 2001) see: http://www.hic.org.au/.
Abstract
The health sector quickly realised the communication potential of the Internet and many health information web sites have been set up. However, these have not generally provided for direct participation in the health policy process.
We review four Australian health information web sites that span a continuum from absolutely no involvement with health policy debate to passionate advocacy of policy change at the forthcoming federal election. Support for these sites ranges from substantial government investment to unfunded enthusiasts. HealthInsite is a government initiative designed to inform all Australians about health matters. HealthInfoNet addresses issues involving Australian Indigenous people. The Chronic Illness Alliance site is directed to organisations and individual involved with chronic illnesses. The PBS-PBAC Resource Web Site arose over concern about recent changes to membership of the Pharmaceutical Benefits Advisory Committee (PBAC) and cost blowouts of the Pharmaceutical Benefits Scheme (PBS).
All these sites have features that could complement each other. These include people's stories and concerns, media repositories, policy analysis by academic and non-government organisations, and government policy documents, reports and budget announcements. We propose linking these fragmented resources into a central health policy repository where not just health organisations, but media, unions, even bureaucrats and industry players could follow policy events as they unfold and contribute to the debate. If each player contributed their own expertise then the resultant whole would be much greater than the sum of the parts. Open source web portal software could provide a cost-effective underlying engine while retiring baby boomers are likely to have both spare time and the technology skills necessary to fuel active participation in issues affecting their future well being. A government interested in participatory policy development might even provide start-up funding.
Introduction
E-health is high on the agenda of the Australian National Office for the Information Economy (NOIE) because of the clear link between the effectiveness of the health care system and wider economic performance. To this end, a number of health informatics projects have been designed to use the Internet to improve information sharing and collaboration among health professionals &/or consumers.
Less common uses of information technology are those that seek to introduce a reflective and participatory dimension to the processes of determining health policy. Certainly, it is difficult to distil complex information into forms suitable for non-specialist use. Even more difficult is opening up agenda setting, program development and evaluation to wider sets of stakeholders. These key elements of the policy process have not generally been considered when developing applications of information technology. This constraint on thinking has been uniform across all areas of policy, not just health. Government initiatives in this area overwhelmingly display an instrumental approach based on service delivery rather than participation. Thus, the opportunity to achieve a 'democratic dividend' from new technologies has been buried in rhetoric and practice about service delivery; based largely on one way, broadcast models of communication. An analysis of government information technology policy and its relation to other aspects of public sector reform is provided in Geiselhart (1999). A study of OECD countries (Gualtieri 1998) found little application of new technologies to policy issues.
The applications of information technology mirror the underlying assumptions and power structures of policy development. Part of the tension inherent in globalisation and its country cousin, Australian public sector reform, is the imposition of solutions without local or stakeholder involvement. For example, within Australia, the centrally imposed policy of information technology outsourcing has led to considerable upheaval, unclear savings, and finally retreat (Audit Report No 9).
In the health field, the maturation of health infomatics inevitably leads to considerations of what lies beyond service delivery. New business models arising from electronic commerce illustrate the importance of a client focus, and lead towards excellence in knowledge management and the focussed collation of feedback. This in turn leads to enhanced participatory mechanisms. The resulting structures, both technical and administrative, have the potential to achieve better outcomes and therefore cost-efficiencies by harnessing stakeholder involvement.
These approaches are now being used in community development, international environmental activism, local council social policy, and general policy formulation. Richard (2000) describes the gradual move towards 'networked government' in Canada, and the implications for interest groups, bureaucrats and elected officials. Together, this field constitutes the study of 'electronic democracy', or the use of new technologies to transform 18th Century patterns of hierarchical and representative governance into structures appropriate to an electronic information age.
This paper analyses four very different health information portals from the perspective of public participation in health policy debates. Finally, this experience is used to outline how more collaborative policy development might be facilitated through the use of new communication technologies
Four public health information portals
Four health information portals are reviewed: HealthInsite (http://www.healthinsite.gov.au) designed for all Australian consumers, HealthInfoNet (http://www.healthinfonet.ecu.edu.au/) targeting Australian Indigenous People, the Chronic Illness Alliance web site (http://www.chronicillness.org.au/) aimed at people with chronic illness and the PBS - PBAC Resource Web Site (http://www-sph.health.latrobe.edu.au/PBAC/) that arose over concern about recent changes to membership of the Pharmaceutical Benefits Advisory Committee (PBAC) and cost blowouts of the Pharmaceutical Benefits Scheme (PBS). We ask the following questions. What kinds of information do they set out to provide? Have they a role in relation to health policy? Do they facilitate broad inputs and dialogue, and if so, how?
HealthInsite
This Commonwealth initiative has the commendable aim of using the Internet to deliver accurate and validated health information to all Australians. The site is attractive, clear and easy to navigate. It contains comprehensive statements about its quality assessment procedures, editorial board members, privacy policy and a disclaimer about the information. However, there is no provision for non-English speaking people, a major defect in a government site aimed at multi-cultural Australia. In addition, HealthInsite has no funds to procure consumer friendly content. Instead, it relies on over 40 approved partner organisations to make free content available via links. Partners include Commonwealth & State Health Departments, professional organisations, health promotion organisations and a few patient self-help or disease specific groups. This multitude of disparate information providers can result in a proliferation of confusing hits about a topic with no summary or overview provided. For example, a simple search for depression produced 300 hits of which the first was information about a national workshop on depression held in November 1997. In addition, the lack of a specific information procurement policy has resulted in large information gaps, for example searching for "Amoxil" (the most commonly prescribed antibiotic) produced no hits. A section titled, "Expert views" attempts to provide an overview of a topic but currently this is only populated by eight contributions. The site does not support "patient" or "consumer" stories or views nor does it include information about health policy apart from the occasional serendipitous link and the search function. The latter produced 938 hits about "policy": The first two came from Queensland Health (about women's health policy and alcohol-related harm prevention dated, 2000) the third came from the Anti-Cancer Council of Victoria (how to become an accredited SunSmart school, 1998), the fourth came from the Commonwealth Department of Health and Aged Care (A national health policy for children and young people, 1995) and the fifth from the National Health and Medical Research Council (A women's health strategy and implementation plan, 1993).
Site interactivity is limited to some quizzes aimed at schools, some personal self-assessment material and a very detailed and a somewhat off-putting feedback form. There was no encouragement on this form to comment on, or debate, health policy. Submitted feedback is not archived and cannot be viewed. The site does provide contact details for an anonymous "HealthInsite Editorial Team" but, in the best bureaucratic tradition, no one is mentioned by name.
HealthInfoNet
This site aims to improve the health of Australia's Indigenous people by making published, unpublished and specially-developed material about Indigenous health freely accessible to policy makers, service providers, researchers, students and the general community. Core funds for the HealthInfoNet are provided by the Commonwealth Department of Health and Aged Care's Office for Aboriginal and Torres Strait Islander Health while the Edith Cowan University also provides the base and some support.
HealthInfoNet consultants, leading experts within various areas of Indigenous health, address quality issues. A key role of consultants is peer-review of specially developed summaries, overviews and reviews. The site is cleanly designed, easy to use and much more interactive than HealthInsite. It actively encourages participation by asking for support from Indigenous health workers, students, researchers, politician and senior government officers, industry and philanthropic foundations. The site offers a noticeboard (mostly intended to advertise jobs, tenders, courses, etc), a list-server and a simple feedback form (with a viewable archive of submissions). The program section of the site includes a comprehensive and well-organised section on policy including Ministerial statements and budget details. However, as yet, the site does not appear to have attracted contributions about patient's or consumer's health experience or specific policy suggestions.
Resources include searchable bibliographies, reviews, theses, a glossary and a media section with speeches and press releases. The list of linked sites is much more extensive than the HealthInsite. Contact details of people involved in HealthInsite are easily found and mentioned by name as well as position. HealthInfoNet also assists Indigenous organisations in the development of their own sites and training in web authoring on a cost recovery basis.
The Chronic Illness Alliance of Victoria Web Site
This site contains information about the Chronic Illness Alliance of Victoria Incorporated, an organisation representing over 40 consumer and advocacy groups on matters of common concern. Members include the Australian Huntington's Disease Association (Vic.), Cystic Fibrosis Association of Victoria, Myalgic Encephalomyelitis / Chronic Fatigue Syndrome Society of Victoria, and Parkinson's Victoria Incorporated. Funds are derived from modest subscriptions and the Web site is correspondingly basic but functional.
The site contains a notice board of meetings and an extensive community directory including member organisations, peak bodies, political parties and peer support. The latter is available through a variety of patient-centred disease-specific listservers. It also has a campaign section dealing with the cost of pharmaceuticals and concerns about treatment in public hospitals. Some of this material appears dated. One section of the site is devoted to stories of individuals, families and people who are facing chronic illness in their lives. The expressed aim is that by reading these stories people can learn how others have coped and adopt some of their strategies if they seem useful.
The site also provides users who are new to the Internet with a technical support section, including answers to and frequently asked questions. Finally, contact details are clearly given, albeit anonymously, and a simple feedback form is also provided.
The Pharmaceutical Benefits Scheme (PBS) - Pharmaceutical Benefits Advisory Committee (PBAC) Protest Web Site
This site arose in response to an ABC-TV Four Corners program, "Paying the Price" that explored recent controversy about the PBAC, whose job is to advise which drugs should be publicly subsidised. The program outlined how, over the last few years, individual pharmaceutical companies had sued PBAC members over decisions not to list drugs such as sildenafil (Viagra®), they had successfully lobbied the Federal Health Minister to replace PBAC members judged antagonistic to industry and had succeeded in getting a former industry lobbyist appointed to the committee. Meanwhile the cost of the PBS blew out.
Minister Wooldridge argued that these changes to the PBAC resulted in a better committee that now contained industry expertise. Critics saw these actions as pro-industry interference that would lead to a U.S. style pharmaceutical system where poorer citizens could no longer afford necessary drugs.
Four Corners hosted an online public forum after "Paying the Price" went to air on February 19,2001. It attracted spirited contributions, the majority of which opposed Minister Wooldridge's changes. This is archived at http://www2b.abc.net.au/4corners/sforum39/. Many respondents expressed a desire to take the matter further. A small core of these people (including the authors) then went on to set up the PBS - PBAC protest web site. The project had no budget, used an existing university web server and was largely maintained by a committed individual working outside his normal employment.
Many people have submitted material to the site: ex-PBAC committee members, health professionals, politicians, government officials, consumers and journalists. Not surprisingly, most material has been submitted by private E-mail; the open discussion board has received little use. This may be because one of the themes that emerged was Ministerial vindictiveness to his critics.
The site now contains PBS-PBAC facts and figures, TV & radio coverage of the on-going debate, links to relevant articles in the medical and lay press articles, cartoons, letters and other material, including detailed policy papers as to how the PBS might be made sustainable. By including press materials and policy information about pharmaceutical issues overseas as well as locally, the site bridges the global-local divide and puts the Australian situation into a broader perspective. The site also contains educational material for downloading, such as consumer-friendly handouts and primers, PowerPoint lecture material, election questions for politicians and e-mail addresses of key players such as Health Minister Wooldridge and local parliamentarians. An E-mail update is sent out about once a week to about 200 subscribers to let them know what new material has been added to the site. This has proved popular, especially with journalists. In addition, other sites such as the Australian Consumer's Association CHOICE Online and the Public Health Association of Australia's Friends of Medicare Campaign, have linked to the PBS site &/or made use of the consumer handouts and primers.
The site design is basic but functional. The source of material posted is always attributed; in this way people can judge quality both by the reputation of the source and by the cut and thrust of opposing views. It also provides clear information (and contact details) of who is responsible.
An attempt was made to scale up the PBS site to a broader based Health Equity Coalition site encompassing a greater number of issues and organisations. As yet, this has failed due to lack of time, lack of resources and conflicting interests of the various groups involved.
Discussion
The four web sites reviewed span a continuum with respect to community participation in health policy debates.
The approach of HealthInsite is consistent with the limited government understanding of the role of information technology in participatory health policy. As indicated above, this currently reflects the philosophy of public sector reform, which prizes efficiency above participation or the social determination of policy goals (Self 1993, Considine 1988, Peters 1996).
The National Office for the Information Economy (NOIE) describes e-health as:
much broader than telemedicine or telehealth. It covers the use of digital data transmitted electronically-for clinical, educational and administrative applications-both locally and at a distance. Hence, e-health is the overall field that encompasses telemedicine and other applications. (http://www.noie.gov.au/)
However, this 'broad' field does not include participatory health policy, a notable omission. A report on E-health commissioned by NOIE (Mitchell 1999) also advances this instrumental view. It offers an integrating perspective, but only in relation to business opportunities and achieving efficiency dividends. It acknowledges that consumers are more demanding of health information and services, and that telehealth approaches can help meet these requirements. However, there is no hint that citizens might also require greater input into health policy, and that information technology might assist here also in providing greater accountability and transparency.
Although largely government funded, HealthInfoNet reflects the commitment of its director, Professor Neil Thomson, and his small team at Edith Cowan University to Indigenous health research and use of the Internet for communication. As well as providing clearinghouse functions HealthInfoNet has a clear focus on Indigenous health policy, especially through the development of policy timelines to assist people to understand the historical and current context of Indigenous health. Their listserver is said to be under-utilised at present; it is hoped this will change as more Indigenous people receive training in Internet technologies.
The Chronic Illness Alliance web site reflects the interests and needs of its member organisations, including policy advocacy. It provides a range of peer-support listservers, the beginning of a collection of peoples stories, a specific political campaign section and contact details of peak bodies and political parties. However, lack of resources appears to have limited the ability of this group to update their campaign material.
The PBS-PBAC protest web site is a single-issue site, clearly focused on achieving policy and political change at the forthcoming federal election. It has attracted a variety of people to submit material ranging from stories of alleged Ministerial vindictiveness to erudite papers proposing detailed policy reform. It may well die after the federal election or, more hopefully, be subsumed into something else.
Before reflecting upon how to achieve greater public participation in health policy it must be recognised that in reality, health policy, health services and health outcomes are related. Divisions between them are necessary for administrative purposes, but linkages between these aspects of health are also necessary to maximise desired outcomes. This is a clear lesson from electronic commerce: in a networked environment, it is the connections between areas that create impact, not the separations.
In the policy field, there is much information that a government agency could provide without compromising its commitment to the government agenda. There would be a small leap involved that could be justified on the grounds of democratic and transparent process, open consultation and diversity of views. Thus, details about policy committees, current issues and discussion papers, press releases, commissioned reports (many of these publicly funded papers are never made publicly available), statistics gathered by bureaucrats, and links to relevant non-government organisations that have an interest in these issues, such as the Health Issues Centre. This kind of information about policy processes is often not available, with the exception of discussion papers. Even then, knowledge that a discussion paper is available is often dependent on looking in the right place at the right time, or being part of a network that is alert to these things. There is evidence that truly interactive media can change the patient-doctor relationship (Feenberg 1995). Such dynamics are not just interesting, but probably essential if developments in the application of complexity theory to social settings are taken into account.
In addition, universities and academic researchers have much to offer. Individual researchers or teams often focus on single policy issues, collect relevant information and provide thoughtful analysis and suggestions. Furthermore, non-government, community and professional organisations such as the Health Issues Centre, the Australian Consumer's Association, the Chronic Illness Alliance and the Public Health Association of Australia often subscribe to electronic news alerts, have policy officers, produce policy critiques, collect people's experiences and have well established lines of communication with their own constituencies. However, such organisations are also inevitably overcommitted and under-resourced. We propose linking these fragmented resources into a central place where not just health organisations, but media, unions, even bureaucrats and industry players could follow the policy events as they unfold and contribute to the debate.
There is now a substantial body of experience and expertise on the use of electronic networking for social change. This builds on and extends the approaches of electronic commerce to enhance social networks. This work illustrates another lesson from electronic commerce: virtual communities can enhance but do not replace real world interactions. Thus, a great web site will work best when the people behind it know each other and have overlapping projects in the real world. Then the technologies facilitate, extend and enhance activities that all stakeholders want anyway. The online environment just makes it easier, and can also save scarce resources by cutting down on phone time, cumbersome faxes, and photocopying or re-keying of information. Efficiency is always a worthy goal, even when the primary goals are not economic.
A good health policy portal could also help to articulate desirable policy outcomes, provide an inescapable layer of accountability by allowing people to tell their 'stories' about experiences with the health care system. A 'chorus of voices' could contribute to a body of knowledge about aged care, oral health, Indigenous health, pharmaceuticals, public hospitals, prevention, drug treatment, genetically modified foods, environmental health, health care financing (eg Medicare, Private health insurance rebate), and infectious diseases, to name just some of the important issues. Early notice about campaigns by particular groups could help each to become more successful, and overcome both the fragmentation of knowledge and action, and the incipient 'tragedy of the commons' scenario that seems to loom in so many areas of public policy. Similar approaches are already being applied successfully to health issues (Peterson Bishop et al 2000).
Open source web portal software could provide a cost-effective underlying engine. A highly successful social activist site based in Sydney (http://www.active.org.au) uses such software to create web-based forms that can be accessed by members at their own PCs. This allows distributed contributions, and eases the burden of maintenance. There are now 7 cities in the Active network, with links to independent media sites. In addition, retiring baby boomers are likely to have both spare time and the technology skills necessary to fuel active participation in issues affecting their future well being (McCallum and Geiselhart 1996). A government interested in participatory policy development might even provide some start-up funding.
References
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