Health Promotion and New Information Technologies

Health Promotion and New Information Technologies - Page 2

4. Emergent Issues, Findings and Specific Recommendations

The initial focus of this paper was on describing the positive and negative experiences, the barriers to use, and future plans to use the new technology reported by individuals, groups and organizations so that others might benefit from their experience, and to provide a foundation for developing recommendations to Health Canada on how it might play a role in facilitating positive use of the technologies in the field. However, once it became evident that the use of the internet in particular was an the verge of

rapid growth within the health promotion community, and that the new technologies as a whole were already bringing into being the information society that futurists have been anticipating for decades, it became difficult to stay within the original focus. Further, the rapidity of change within the field called into question the utility of any attempt to precisely describe the current state affairs. As one of our informants put it, "Anything you write will be outdated before you can publish it."

Because the field of health promotion, its use of the internet, and the capabilities, uses and usage levels of the new information technologies are evolving rapidly, the current study is best understood as exploratory. It seeks to identify and raise issues that merit further discussion. Consistent with this view, most recommendations, whether they be to Health Canada or to the field of health promotion in general, should be taken as requiring some amount of further discussion and, in some cases, research, prior to adoption, modification or rejection. We assume that this paper will be circulated beyond Health Canada for the benefit of all persons interested in health promotion and the broader issue of health and the new IT.

The issues identified and findings are relevant to the whole field of health promotion. Recommendations are sometimes for the field as a whole and sometimes for particular components of the field. Where recommendations are intended particularly for Health Canada's consideration, this is made clear in the text of the recommendation.

Findings, discussion and recommendations are presented throughout. Discussion and recommendations frequently go beyond the data gathered in the month and a half of investigation. The author draws freely on his experience in working on health promotion research, policy and programs in government, the private sector and the voluntary sector, as well as on his training as a sociologist, to suggest and discuss issues and frame recommendations. The next section on access and use of the internet presents information gathered from each of the main groupings of informants. For those who are primarily concerned with obtaining a description of the current state of the use of the new IT in health promotion, this section will likely be of the most interest. In addition, useful descriptive information has been summarized in appendices.

4.1 Realizing the Potential:

Improving Access and Use of the Internet

This section of the paper discusses and analyzes the state of use of the new IT separately for various groups of health promotion stakeholders. Given that the success of health promotion lies in communication and networking among the members of the health promotion community, this method of presentation results in some duplication and overlap of discussion. Further, important sub-topics such as the potential of the internet to link researchers and practitioners do not get the attention that they deserve. Others have investigated or are in the process of investigating specific uses of the new IT. We can anticipate that more demonstrations and studies will be forthcoming. The function of this paper remains to provide a snapshot of a shifting landscape.

The stakeholders covered include the public, individual practitioners, provincial public health associations, health promotion research centres, health promotion and social development offices of Health Canada, and national voluntary organizations involved in health promotion. Missing from our review are local public health units, community groups, and health promotion projects. These fireflies of health promotion have been vital for the maintenance and spread of the ideas of health promotion and for the development of lasting local and regional programs. They or their health promotion projects come and go with fluctuations in government budgets, changes in community conditions and priorities, and so on. It is hard for a study with the time and resource constraints of this one to reach a significant number of such groups. However this should not stop us from thinking about them in the following discussions.

For each group discussed, our primary concerns are with access and use of the internet, including understanding the barriers to use and the likely level of future use.

4.1.1 Empowering the Public

It is estimated that there are over 36 million internet users in the world. The average age of a user is 35, and only 15.5% are female (although this sexual imbalance is expected to disappear quickly). About 50% are married, with 30% working in computer related fields¹.

Although accurate counts are not possible, it is clear from the numbers and use of health promotion related web sites and newsgroups that a substantial number of the general public are using the internet to get information on health issues, to obtain practical advice and social support on matters affecting their health, as well as to develop and undertake collective action to create more healthy living conditions for themselves and others. A recent survey of users of a health promotion web-site set up at Monash University in Australia found that of the approximately 20% of users who responded, 95% felt the internet was a good source of health information and 85% would recommend the web-site to others.

The public's willingness to turn to the internet for health-related information has inspired a number of sites to develop in the United States and Canada that are oriented to the provision of health related information to individuals. It appears that non-governmental groups, including self-help groups and alternative medicine groups, as well as some well-established NGOs, have done the most to provide information directly to the public through the internet. Private entrepreneurs have also been attracted to the internet to sell everything from psychiatric counselling, medical help and information to herbal remedies and reducing soap, raising questions about the need for quality control and consumer protection in the process.

Perhaps a more important dimension of public use from a health promotion perspective is the public's use of the internet to link to other individuals coping with similar health difficulties or sharing similar health concerns for the purpose of obtaining both practical and empathically informed advice, information, and social support. Various health organizations provide homepages that provide individuals with easy access self-help and mutual aid groups. Direct access to such groups is also available via Usenet. Increasingly usenet listserv's are being supplemented by listserv's and real time on-line conferences created, mediated or facilitated in by health organizations and groups for the constituencies that they serve. Some of these may have restricted access and in some cases there may be a fee associated with access.

The potential of the internet to assist and empower individuals by providing high quality information in multiple forms of media, and to provide access to personal social support in real and cybertime, when it is needed, is an extremely positive aspect of the internet. Similarly, the internet's capacity to collectively link people with common interests and concerns across time and space, as well as to provide timely access to a wide range of people, organizations and information gives it the potential to help the development and maintenance of collective action to promote healthy policies, programs and living conditions.

The flipside is that the internet can be used to misinform and harm individuals. It has the potential to be used to promote unhealthy policy and action based on misinformation, misunderstanding or even malicious intent. Further, unequal access to the internet and its applications can create or exacerbate inequalities in the population's health and, under current conditions, can skew the development of internet resources in favour of dominant on-line populations making it even more unlikely that less dominant groups will make the effort to get on-line. The key is to find ways to maximize the positive and minimize the negative potential of the internet. Here is what one of our key informants had to say on this point:

I would emphasize the empowerment or self-directedness that one has with this medium. To be making choices or be in more control of the decisions which affect one is the feature that I do not think that policy makers nor professionals have fully "plumbed." My experience with the power that is exerted by one is with the old warning information about LSD laced children's tattoos. It sends out the warning call. When the warning is heeded and there is not a danger in place it becomes a case of crying "wolf" once too often. That has happened with this one message 2 times in the last 5 months from one person "surfing the internet" and taking action. There needs to be some standards or star rating system for the information that goes on the www or internet address.

The policies related to including the poor to have to this self-help medium is another issue that needs to be considered. There is the potential for this to be yet another middle and upper class resource while not coming to grips with the social relations and economic or environment healthy communities matters.

Our observations of the internet tell us that many people are using it to obtain information and personal support for promoting and maintaining their own health and that of others close to them. Information on the internet has the advantage of being available when it is needed. Even if misleading or harmful information is available on the internet it seems important that we attempt to promote access for all to this new method of getting health information when people are motivated to have it. In our view achieving "access for all" is an increasingly important component of achieving "health for all."

It is especially important in providing access that specific plans be developed to overcome the access barriers faced by the poor, the illiterate, non-English speakers, and persons living in remote locations. Some of these problems can be addressed by the wizardry of the continually evolving new technology. But it will take a willingness by Canadians and their governments to invest more time and money into the social support and development of less fortunate citizens.

RECOMMENDATION:

In view of the potential contribution that use of the internet can make to the health of Canadians who are trying to promote and maintain their health and that of others, it is recommended that:

In keeping with its national Mission to help the people of Canada to maintain and improve their health, we recommend that Health Canada adopt the goal of ensuring that all Canadians have access to the internet for the purpose of accessing health promoting information and support, and consult with other levels of government and members of the health promotion community to develop a viable strategy and work plan for achieving this goal.

Some of the questions and issues that merit discussion in the course of consulting about a viable strategy include the following:

• Should the strategy be linked to other social development and employment strategies? Given the increasing importance of accessing and understanding the new IT for work and education, and their importance as determinants of health, an integrated strategy may be sensible;
  
• What are the implications of the location and timing of access? The internet may transcend time and space, but it is unlikely that all of the people who will want to access it can. How can we provide access to those who can't afford their own link?
  
• Should improved access to the internet be accompanied with training in:
  
  1. how to use the equipment,
  2. the nature of the net, and/or,
  3. how to distinguish useful from useless or harmful information? Should support be available to help interpret health information, or to make appropriate referrals?
     
• Who pays? Should access to health information be like access to medical care? Is it something that should be supported collectively with tax dollars?
  
• How will creating access for all alter the structure of power and influence within the health promotion community? How will not creating access for all affect the same structure? What are the benefits and disadvantages of both options?

It is beyond the scope of this paper to recommend a detailed strategy or work plan for achieving access for all. In any case, there are many approaches to increasing access that are being tried, and these should be reviewed in detail to inform such detailed planning. These range from efforts of public health associations to get their boards to use e-mail, providing written guides on how to access the internet and communication functions, to arranging for a regional buddy system for providing one-on-one help. (The Community Health Promotion Network of the Atlantic have tried to introduce the latter). There are also now a number of individuals who appear to be very experienced in dealing with getting health people on-line, and who should be consulted in the process of developing a strategy and workplan. Names of such individuals are available from the author.

The majority of people who will use the internet will probably never be interested in health promotion as a field of study or work. They will be seeking answers to health questions, support in dealing with health problems or in achieving health goals. For these people, the key is to be able to sort through all the "junk" on the internet and find the type of information or support they need from a source they trust. There are a variety of ways that this might be accomplished. Options that might be considered include:

• Provide easily accessible high quality information, and links to high quality facilitated listserv's and live discussion groups.
• Enabling consumers more discerning and discriminating through training and education;
• Protect the public through regulation, control and prosecution of persons and groups providing misleading or harmful information;
• Assess and rate the quality of information and support services with a view to informing the public;

The above list is neither exhaustive nor mutually exclusive. A variety of more specific strategies and initiatives involving a wide range of groups and organizations could easily be developed for helping the public to easily identify reliable information and health promotion resources on the internet. The major questions that remain are: Who should provide these services? and, How these services should be financed?

One ex treme is to count on the free enterprise system and market forces to generate discerning search engines, review sites, registered conferences, and quality ratings on a fee for service basis, by selling advertising space or some other cost-recovery method. A major limitation to relying on free enterprise is that only areas of health promotion where there is high demand from a relatively large group with money to spare are likely to entice entrepreneurs to risk the capital needed to develop the services. At the other extreme is to rely on government to take responsibility for developing and funding health promotion resources for public access.

Practice to date reveals a mix of approaches. The federal government's own Health Canada Web Site provides the public with information about some of its health promotion related programs and projects as well as helpful links to other government programs and various health sites. Health Promotion On-line has, to date, been oriented to intermediaries and not the general public, although it is a logical candidate to be developed as a direct service provided to the public. Voluntary organizations, local health groups and organizations are more likely to provide the public with access to practical information or links to helpful on-line discussion groups. Most often groups and organizations have the understandable aim of providing the public with access to information on their group or organization's primary health issue or concern. Few organizations have a mandate to justify, or the spare resources to enable them to provide the public with an easy to use system to search out information and support across issues. For this the public must rely primarily on relatively unspecialized search engines with little or no quality control.

Our experience in searching the net is that it is not very easy for users who lack time to surf the net to locate trustworthy information on fairly basic health promotion concerns. As one key informant summed up the situation:

"It's garbage in and garbage out, too much junk to wade through"

(Board member of a provincial public health association).

If the potential of "access for all" is to be realized it will be important to find appropriate strategies to overcome this difficulty. We do not believe that this is an area where free-enterprise can carry the day. Further, we do not see any sign that other key health promotion stakeholders are likely to take on this task. Mandates are too narrow or resources are too dear or both.

Health Canada has an historic role in safeguarding and promoting the health of all Canadians and of informing Canadians of threats to their health. As access to the internet increases, it might be anticipated that the department's social marketing and information dissemination budgets will be shifted to support new initiatives aimed at ensuring that Canadians have the information they need and want in a format that meets their needs. Further, beyond Health Canada's historic role and present mandate, there is a broad consensus in the health promotion community on the importance of informed public participation in health decisions, of taking responsibility for one's own health, and of citizen action on the determinants of health that lie outside of medical practitioners' influence in the national process of health care reform.

It thus seems important that Health Canada begin planning to restructure its approach to communicating to the public from one of communicating very simple messages to broad target groupings, to an approach that makes use of the new IT to provide information of varied complexity and form in response to the individual or organization seeking information. This would also serve to allow the public to provide direction to Health Canada regarding the types of information in demand.

RECOMMENDATION:

It is therefore recommended that:

Health Canada initiate discussions aimed at having senior levels of government review their current methods of communicating with the public for the purpose of enabling individuals and groups to take responsibility for their own health and the health of their communities. Such reviews would help ensure that appropriate plans are developed and action taken to make use of the potential of the new IT. It is essential that non-government stakeholders who are knowledgeable regarding the new IT and health promotion be involved as advisors to this review. Health Canada should set up its own review for this purpose and involve other Departments as needed.

Much needs to be learned about public use of the internet for support and mutual aid through networking. It can be argued that this is an area where government can be helpful by providing support for demonstration research projects to generate information on how to make effective use of the internet, and by facilitating networking on key health promotion issues. There is a significant problem when it comes to government facilitating social action to address determinants of health. Income distribution, adequacy of housing, welfare and work policy are all important factors in health, and legitimate topics for health promoters to network and mobilize around. They are also highly political topics, crossing levels of government. Yet support is needed to learn the skills of using the new IT to investigate and critically discuss such issues and to mobilize others on issues that threaten health. This said, all levels of government have an interest in and an obligation to develop a well informed and involved citizenry that is capable of assessing what is and is not in the interests of its health and well being.

RECOMMENDATION:

It is therefore recommended that:

Health Canada carry out cross country workshops with other levels of government, internet providers, representatives of public interest groups and representatives of the health promotion community to discuss and determine what actions can and should be taken to use the internet to develop and support informed public action to address the determinants of health.

It is not just the absence of a discriminating health promotion search engine that limits the potential of the internet to enable the public to promote their own health. There appears to be an actual shortage of health promotion information and resources on line. As an Ontario researcher put it:

"It's (the internet) overrated for information. I'd rather use a library and get something solid, something that had to pass some hurdles before it was published. The internet is for instant communication, organizing and mobilizing." (Ontario Researcher)

On-line mutual aid and social support groups can expected to grow naturally as the number of people on-line increases. However, it is not clear how much health promotion information will be available or how much of what is available will be appropriate for Canadians. The proliferation of US information sources provides another area in which Canadians may be influenced by concerns and perceptions that are inappropriate to their context. In telephone interviews with national NGOs, comments were made on the differences in food content, labelling, lifestyle, institutions, cultural context (crime rates, inequality of access to medical care, poverty), and other matters. Comments were made about the absence of Canadian content, context and analysis on the internet. Thus, while many useful and respected foreign sources were cited, it was also stated that Canadians need easily accessible and highly visible Canadian sources.

The new IT provides government, health promotion groups, organizations and practitioners with a low cost method of distributing health promotion information and knowledge at a level of complexity and in a media format that can match the preferences and demands of individual users. At the same time, information of all kinds and forms is increasingly being made into a commodity for sale. Of particular concern is the current government emphasis on cost recovery. Internal documents provided by Health Canada for this study show strong interest in cost recovery through the sale of information and access to information. Likewise there already are examples of universities, NGOs, and private enterprise selling health information on-line. The value of providing all Canadians with access to the new IT will be substantially reduced if cost becomes a barrier to accessing information on-line.

Rightly or wrongly, there is substantial political support for government to use cost recovery strategies. There are also strong financial pressures that universities and other information producers and providers feel necessitate user charges. However, the case can be made that in the reinvention or "reform" of the Canadian health system, access to health information is as critical as access to health care. Neither should be prevented because an individual lacks money. In a system in which individuals are expected to take more responsibility for their health, it is hard to deny that cost barriers to information are barriers to health.

RECOMMENDATION:

In view of the above it is recommended that:

Health Canada, in concert with other producers and providers of health information and resources that individuals can directly use in taking responsibility for their health, develop a strategy and accompanying initiatives to ensure that such information and knowledge is available to the public on-line and free of charge.

4.1.2 Individual Health Practitioners

Our best guess is that the number of practitioner users is low but growing. The evidence is equivocal but in the same direction. We know that Health Canada's Health Promotion On-line has 1,152 registered subscribers, although several of our informants questioned the meaning of this figure, pointing out that multiple subscription was likely taking place and that registration was necessary to explore the bulletin board, with the consequence that one-time browsers get registered. While this is an electronic bulletin board, it can be reached by telnet over the internet, and according to Health Canada documents can provide the system operators with detailed information on the types of uses subscribers make of the Board's services. In addition, it should be noted that the Alberta Ministry of Health is funding "Health in Action: On-line Access to Health Promotion and Injury Prevention Information," which is run by the Alberta Centre for Well-Being. It is getting 500 visits per day on the internet. The Alberta Centre has a web site of its own, which is focused on informing well-being professionals. It claims a network of 5,000. Another indicator of use is that 574 people are now networked in New Brunswick's community health promotion network.

Most of the practitioners we contacted who had some familiarity with the internet and its applications were involved in projects that specifically made use of the internet, were involved in the development of health promotion World Wide Web sites, or were researchers. Within the research community it appears that some researchers have used e-mail for a number of years to provide linkages to "kindred thinkers" in other parts of the country and overseas, whereas others see it as a source of pestering, unwanted e-mail. The most certain thing that can be said about health practitioners' use of the internet is that there is great variation in the use and skill in using the internet among health promotion practitioners. As one key informant reported:

"[name of person] did a workshop on electronic communication for health promotion community groups. As participants described their situations and uses of the technology, it became clearer just how uneven the playing field really is."

Focus groups held with officers of a Health Canada Health Promotion and Social Development Office and with a provincial Public Health Organization further confirmed this view with individuals showing considerable variation in their understanding and use of the internet and internet applications. However, it is noteworthy that virtually everyone in both focus groups was very enthusiastic about getting on-line and exploring the potential of the internet for obtaining information, and for networking and facilitating the development and activities of community-based health promotion groups.

Over the last three years there has been a shift in the attitude of many health promotion practitioners towards the internet and computer-based information technologies in general. While many remain "off-line," there are fewer who dismiss the new technologies as impractical for work in health promotion. There are still many who feel the promise of the internet is overblown, and many also who have reservations about the ability of the internet to reach those most in need. This said, our consultations revealed a general mood of "let's get on with it, it's a coming reality of work in the field." Getting on with it means different things to different people. But to most it begins with learning to use e-mail on the internet.

The most imminent and impending reality of the internet for most health promotion practitioners is e-mail. For the most part, e-mail is seen as a way of increasing the efficiency of one-to-one communication. Only a relatively small number of practitioners have begun to tap the full potential that it offers for sending files, subscribing to listserv's, and networking. "Most professionals are using e-mail, except in government, and some research is going on, on the internet." (Ontario Researcher).

At the moment, most of the concern with barriers is focused on the problem of getting access to appropriate equipment and software, and to training and technical support. As one informant put it, "Most people are at the front end, they just see the net for getting information and just focus on getting on-line." Overlaying this issue is a concern with equality of access to the new technology. Health promotion practitioners are not completely sure of the benefits that the new technology will have, but there is awareness that information is power, and that without access to the technology, practitioners are in danger of being excluded from that power.

Many of the people contacted in this study emphasized external barriers to use such as lack of training or time to learn, and lack of computer equipment, internet linkages, or technical support. Software becomes out-dated in about 15 months, on average, hardware in 30 months or so, and even then there can be incompatibilities in hardware and software that create difficulties for even some of the most basic internet tasks. On the plus side, costs of hardware and software are on the decline, and new stripped-down computers designed especially for internet communication are projected to be on the market soon at prices as low as $500.

A number of projects have taken place that involve helping health promotion practitioners and the public to learn how to use the technology for health promotion purposes. Sam Lanfranco and Simon Mielniczuk have articles on this topic on-line and accessible through the Ontario Prevention Clearinghouse WWW home-page. Similarly, Liz Rykert has done much to reduce barriers to health promotion practitioners getting on-line through projects in Ontario. In Toronto, Liz Rykert reports getting two or three calls for assistance per week. In the Maritimes the Community Health Promotion Network Atlantic Region has facilitators in each province to help practitioners get on-line. In Northern B.C., Don Petitt, with assistance from Mike Hollinshead, attempted to integrate the use of the internet into pre-conference planning, into the conference itself, and into post-conference follow-up. In the process they learned a great deal about getting people on line.

Increasingly, training and assistance to accessing the internet is becoming available from private sources at a reasonable cost. Over time it can be expected that help will be available to most Canadians from family, friends or neighbours, at least for using the most basic internet applications. It is encouraging to read from Simon Mielniczuk's study of on-line health promotion that, "Most of the frequently occurring problems and training needs can be identified and solved by a local staff person or volunteer." Learning how to access and to develop and participate in on-line health promotion networks is another matter.

There appear to be barriers to participation as well as to getting on line. In his study of the use of on-line communications in a six-year pilot project aimed at establishing

new methods of communicating and working between researchers and community practitioners, Mielniczuk found that most project participants "never appear as contributors in group discussion spaces," and further that,

"The greatest observed determinant of on-line activity has been the communication methods preferred by the project supervisor for the overall research project. When this person increased on-line availability and on-line group communication, the community participation increased dramatically. With a change in staffing, the communication method shifted to fax. On-line activity and sharing in group conferences decreased dramatically.

If high status persons are participating on-line, it may send a sign to others that this is a useful and expected method of communicating. It may also provide those interested in being visible to influential people with an opportunity to be seen. Outside of project networks, the active participation of high status or powerful persons may serve to legitimate and entice participation, however for many health promotion practitioners it will be important for their superiors to have an understanding of the potential of on-line communication to support the work of the organization if they are to encourage its use.

Some of those we consulted made it quite clear that there is a cultural barrier to participation in on-line networking. To participate in an on-line discussion group is to enter into a new culture with new norms and etiquette, in which writing must carry the weight of inflection, tone and gesture. Clumsy fingers and glitches in the hardware or software can result in major faux pas. On top of all this, you may be entering into interaction with people you've never seen before, and who have never seen you. For those using the internet to network or to develop new alliances and groups, understanding these cultural barriers and how to overcome them may be as important as explaining how to hook up a modem to a computer.

There are other barriers to use by health promotion practitioners that, while important, are sometimes overlooked. One is a lack of awareness of what is available through the internet. In the course of this study we encountered very skilled and knowledgeable health promotion practitioners who expressed the desire for information or ways of communicating that are available through the internet, but were unaware of its relevance to their needs. They tend to view the internet as something for the kids, as a "cyberspace, virtual reality thing," not as a potentially powerful and sophisticated communication and information tool for their use.

It is very likely that some of this lack of awareness is simply due to being so busy doing health promotion that there is little time to think about or investigate new methods of communicating or working. Our sense is that, to date, experimentation with the new IT has been by a relatively small number of health promotion advocates who have some discretionary time in the workplace or who volunteer their own time to learn how to use the new IT.

If it is important to have a goal of ensuring that the public eventually have access to the internet for promoting health, it is also important that individual practitioners and the small health and community groups and organizations they link to have access to the internet and the new IT. Further, it is important that once access is available that it be used for networking and sharing among practitioners. At the moment there is much work taking place on how to use the networking potential of the internet and its various applications most effectively.

RECOMMENDATION:

In order to facilitate the emerging networking potential of the internet for health promotion practice, it is recommended that:

Health Canada commission a study to carefully investigate and assess the advantages and disadvantages of different approaches to ensuring practitioner access to the internet, and facilitating participation on it. This study would draw heavily on the experiences of projects and studies already completed or currently under way in Canada and the United States. Consideration would need to be given to the problem of providing access to practitioners in remote areas.

RECOMMENDATION:

In order to attract more practitioners to attempt to use the internet it is recommended that:

Health Canada sponsor periodic on-line discussion groups in which health promotion practitioners can direct questions to and dialogue with panels of national and international leaders in the field of health promotion. The panels would be paid and assisted by Health Canada to participate. A 1-800 number could be set up with technical staff to assist practitioners to access the on-line discussion.

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