- freely available
Information 2012, 3(3), 391-402; doi:10.3390/info3030391
Abstract: People increasingly can and want to obtain and generate health information themselves. With the increasing do-it-yourself sentiment comes also the desire to be more involved in one’s health care decisions. Patient driven health-care and health research models are emerging; terms such as participatory medicine and quantified-self are visible increasingly. Given the health consumer’s desire to be more involved in health data generation and health care decision making processes the authors submit that it is important to be health policy literate, to understanding how health policies are developed, what themes are discussed among health policy researchers and policy makers, to understand how ones demands would be discussed within health policy discourses. The public increasingly obtains their knowledge through the internet by searching web browsers for keywords. Question is whether the “health consumer” to come has knowledge of key terms defining key health policy discourses which would enable them to perform targeted searches for health policy literature relevant to their situation. The authors found that key health policy terms are virtually absent from printed and online news media which begs the question how the “health consumer” might learn about key health policy terms needed for web based searches that would allow the “health consumer” to access health policy discourses relevant to them.
How we envision health care constantly changes. Advances in science and technology including health information technology are one dynamic influencing visions and reality of various aspects of health care including the facet of who generates, conveys and acts on health information. In recent times one can observe the move towards a more active role of the “patient”, the emergence of the health consumer [1,2,3,4,5,6,7,8,9,10,11], a move towards participatory medicine [12,13], quantified self-tracking [14,15] and patient driven health-care models  which among others change the dynamic of who generates, conveys and acts upon health information. The extent to which health consumers are able to act upon information and actively participate will depend on their level of health policy literacy. According to Schoole, “Stakeholders required a certain level of policy literacy to effectively participate in the policy process and the model within which policy development unfolded.”  According to Cross, Mungadi and Rouhani, Schoole perceives as a “lack of policy literacy”, the lack of understanding of the complexities entailed in the process of development, negotiation, adoption and implementation of policy in a particular context . According to Malone, “Basic health policy literacy means having some understanding of the ways policy issues have been shaped by larger social forces, and how they have been addressed in the past.” 
The authors submit that health policy literacy includes among others (a) the understanding of how policies are developed and their social embeddedness; (b) the understanding of the history of presented arguments in a given health policy discourse and the consequences flowing from contemporary arguments used; (c) how policies and their discourses might be impacted by emerging social and scientific and technological developments [19,20,21,22,23,24,25,26,27,28].
The authors submit that there is a need for an increased health policy literacy among health consumers in order to be able to contribute in a meaningful way to the shaping of health policies given constantly changing laws, policies and actions frameworks for health care deliverance and public health [29,30,31], changing threats to health and wellbeing and even changes to the very meaning of health .
Many academic journals have health policy sections such as the American Journal of Public Health but how does the public achieve health policy literacy and health policy discourse literacy? Given that the public, health consumers included, obtains information increasingly online by inputting keyword queries into search engines, the authors submit that the public must as one skill have the knowledge of keywords that define various health policy discourses. Searching with the right keywords opens the gate to obtaining health policy and health policy discourse information, which is a prerequisite to health policy literacy.
The authors submit that media have a vital role to play in generating keyword recognition knowledge for the public The authors present in this paper the visibility of key health policy terms in news media, medical and health journals. The authors found that key health policy terms were virtually absent from printed and online news media which begs the question how the public develops the knowledge of key search terms that allows them to access key health policy discourses.
Although there are health policy terms such as health insurance, well-being and health care reform that are mentioned more in the news media group than in the medical and public health journal group or health journal database group the authors found that the frequency of most key health policy terms such as health economics, health ethics, determinants of health, burden of disease, social wellbeing, tele-health, e-health, disability adjusted life years, health technology, health technology assessment and evidence based medicine is 10–100 fold lower in the news media group versus the medical and public health journal group and health journal databases group (Table 1).
|Keywords||News media (New York Times; CNN; Times, UK)||British Medical Journal (BMJ), AJPH and Lancet||Health journal databases|
|°||% of “health”||°||% of “health”||°||% of “health”|
|Determinants of health||20||0.002||642||0.2605||6909||0.149|
|Burden of disease||70||0.006||1381||0.560||10902||0.234|
|Social well being||502||0.042||361||0.1465||4320||0.093|
|Disability adjusted life years||72||0.006||390||0.15828||1785||0.038|
|Health technology assessment||25||0.002||579||0.2349||6303||0.135|
|Evidence based medicine||125||0.011||2126||0.8628||58710||1.262|
If one assumes that health policy terms are first used in health related academic discourses it might be understandable that newer terms such as tele-health and e-health are less visible in the public media as it takes time for terms to diffuse from one discourse to another. However, most terms are around for some time in the health policy and research literature. Interestingly for some newer developments certain terms with health policy implications are invisible in all three groups. Searching the New York Times for terms such as “participatory medicine” or “quantified self” or “quantifying self”, or “self quantified” do not generate any hits. The phrase “user generated data” only generates 15 hits. All these terms do not generate hits in the American Journal of Public Health, Lancet or the British Medical Journal and none to below five hits in the different health databases searched for data for this paper. These terms are available in media outlets that cover cutting edge developments in a foresight manner such as TED talks. This suggests that it is not only the non-academic media that has problems with introducing their readers to cutting edge developments with health policy implications but that the academic media also has problems. Table 2, Table 3, Table 4 give the hit results in more detail for the individual members of the different publication groups.
|All fields||% of “health”||All fields||% of “health”||All fields||% of “health”||% of “health”|
|“Determinants of health”||290||0.18||236||0.53||410||1.121||642||0.2605|
|Health care reform||421||0.25||134||0.30||341||0.932||896||0.3636|
|Burden of disease||442||0.27||689||1.54||250||0.683||1381||0.560|
|Social well being||134||0.08||21||0.05||206||0.563||361||0.1465|
|Disability adjusted life years||103||0.06||238||0.53||29||0.079||390||0.15828|
|Health technology assessment||450||0.27||120||0.27||9||0.025||579||0.2349|
|Evidence based medicine||1551||0.94||492||1.10||83||0.227||2126||0.8628|
|Keywords||Canadian Health Research Collection 1999–today||CINAHL 1974–2010||AgeLine (AARP) database 1978–2010||Health Source Consumer Edition 1984–2010||Health Source: Nursing Academic Edition 1952–2010||Informa Healthcare 1918–2010||Pubmed 1870–2010|
|Title, % of “health”||Title, % of “health”||Text, % of “health”||Title, % of “health”||Text, % of “health”||Title, % of “health”||Text, % of “health”||Title, % of “health”||Text, % of “health”||Title, % of “health”||Text, % of “health”||Title, % of “health”|
|Care Health economics||11.119||0.078||0.432||0.139||0.091||0.023||0.104||0.110||0.748||0.143||0.926||0.321|
|“Determinants of health”||17.616||0.171||0.175||0.128||0.170||0.045||0.120||0.153||0.395||0.041||0.051||0.000|
|Health care reform||7.091||0.992||1.106||0.856||2.675||1.329||1.215||1.089||1.162||0.347||0.267||1.145|
|Burden of disease||5.235||0.072||0.176||0.021||0.065||0.098||0.125||0.153||0.573||0.204||0.941||0.112|
|Social well being||0.575||0.014||0.094||0.054||0.321||0.000||0.051||0.013||0.206||0.041||0.333||0.033|
|Disability adjusted life years||0.446||0.009||0.028||0.000||0.002||0.008||0.026||0.018||0.101||0.020||0.163||0.026|
|Health Technology Assessment||10.562||0.136||0.145||0.000||0.011||0.000||0.021||0.055||0.233||0.123||0.388||0.063|
|Evidence based medicine||1.485||0.925||0.484||0.086||0.108||0.203||0.267||0.704||1.137||1.001||1.286||2.055|
|Keywords||NYT 1850–today||CNN||The Times UK 2003–25 June 2010||All|
|Text, % of “health”||Text, % of “health”||Text, % of “health”||Text, % of “health”|
|Health||100 = 1,069,577 hits||100 = 35,475 hits||100 = 70,620 hits||100 = 1,175,672 hits|
|“Determinant of health”||0.0009||0.0028||0.0085||0.0014|
|Health care reform||0.2667||4.6850||0.0496||0.3870|
|Burden of disease||0.0046||0.0113||0.0297||0.0063|
|Social well being||0.0463||0.0000||0.0099||0.0427|
|Disability adjusted life years||0.0001||0.2001||0.0000||0.0061|
|Health technology assessment||0.0008||0.0282||0.0085||0.0021|
|Evidence based medicine||0.0065||0.0000||0.0637||0.0098|
As for the difference between the British Medical Journal, Lancet and the American Journal for Public Health (medical and public health journal group, (Table 2)), the BMJ has at least double the hits for the terms patient and health economics; Lancet leads the hits for the terms health systems, burden of disease, disability adjusted life years and global health whereas the American Journal of Public Health leads in 17 other terms. However the gap between position one and two in counts for a given term never exceeds the limit of 5-times less. The results between different health journal databases (Table 3) generated roughly the same hit frequency pattern as evident in AJPH, BMJ and Lancet.
As for the difference between the NYT, CNN and the Times (UK) (results for the News Media, Table 4) they show remarkable similar percentages for most terms with only a few being more pronounced in one source over the others. Even more remarkable all of them have a very low level to no hits for the key health policy areas terms health economics, health ethics, determinants of health, burden of disease, social well-being, tele-health, e-health, disability adjusted life years, health technology, health technology assessment and evidence based medicine. Indeed if we compare the average of these terms in the media with the hit frequency in for example the AJPH one finds a 30-fold higher frequency count in the AJPH for the term burden of disease; an at least 50-fold higher frequency count in the AJPH for the term health economics, health ethics and more than a 100-fold higher frequency count in AJPH for the term disability adjusted life years, health technology, health technology assessment and evidence based medicine (in relation to the term health used in all the sources).
3. Experimental Section
The authors performed a frequency analysis of health policy discourse defining terms such as health economics, health reform, health ethics, determinants of health, health systems, health insurance, health care reform, burden of disease, global health, social health, well-being, social well-being, environmental health, medical health, health services, tele-health, e-health, health law, disability adjusted life years, health technology, health technology assessment, evidence based medicine appearing in three distinct groups of publications. (a) Newspapers and online media (New York Times from 1850 to today; CNN from 1980 to today; The Times UK from 2003 to 2010); (b) Medical and Public health journals (British Medical Journal from 1840 to today; the Lancet from 1840 to today; the American Journal for Public Health from 1911 to today) and (c) various academic databases covering health literature (Canadian Health Research Collection 1999–today; CINAHL 1974–2010; AgeLine (AARP) database 1978–2010; Health Source Consumer Edition 1984–2010; Health Source: Nursing Academic Edition 1952–2010; Informa Healthcare 1918–2010 and Pubmed). The New York Times archives were systematically searched using (a) the ProQuest search engine (provided by the University of Calgary) for articles from 1851 to 2006 and (b) the archive search engine on the New York Times website for articles from 2006 to August 16, 2010). The NYT was searched for various health policy keywords, first as a full text search, and then as a title search (if the text-search generated more than 300 hits). For CNN, British Medical Journal, American Journal of Public Health and Times (UK) the archive search engines on their respective websites were used. Health Journal databases were searched through the University of Calgary databases provided. The search was performed July–August 2010.
Limitation: The health policy discourse defining terms used in this paper were generated by asking three health policy scholars what keywords would come to their minds. The list we used is not an objective or exhaustive one; for a given health topic different health policy terms might be looked at [39,40]. Nevertheless, the terms given by the three health policy scholars reflect terms used frequently in health policy discourses.
So far little effort goes into developing health policy literacy of stakeholders. Although health consumer groups are seen as increasingly getting involved in health policy processes  it is less clear how much knowledge individuals of such groups have in regards to health policy discourses; no measure for health policy literacy exists. The Government of Canada and Canada’s voluntary sector, announced in June 2000 a partnership with 200 national voluntary health organizations on health policy and program development , however it is not clear to date what the impact has been.
“Mass media agendas and health communication objectives can be authoritative allies or forceful foes when it comes to supplying the public with accurate and timely health information.”  Media are seen to influence public health policies and the behavior of the health consumer [44,45,46,47,48]. However problems are identified in the role mass media play [43,49,50]. An article by Gasher et al. illustrates that media tend to cover narrow scope angles over broad ones and the article gives various reasons as to why this preference in reporting takes place . That the keywords from health policy discourses are not diffusing into media sources can be seen as one problem of how media report on health issues. Not giving the people the tools to be health policy literate keeps the power within the media to shape discourses. We submit that the lack of visibility of key terms used in health policy discourses within media sources constitutes a breach of the role media are supposed to play and hinders the democratization of the healthcare discourse. Given that health consumers increasingly might not want to influence the system through “their” health consumer group but rather want to directly influence the system, a higher health policy literacy of the individual is needed.
People believe that there is a need to create consumer-friendly terminologies reflecting the different ways healthcare consumers express and think about health topics [52,53]. The authors submit that this is only one needed direction. Keyword literacy of health consumers also has to exist in order to be able to find various health policy discourses. The health consumer needs concise keywords to search the internet and to become health policy literate. Searching terms such as “health policy” leads to too many hits to be really useful. How can one become health policy literate around the discourses of, for example “social determinants of health”, if one does not know the term to start with? The key terms have to diffuse from the health policy discourses into the public domain. This would allow people to access many different sources around a given health policy discourse from mass media to open access academic journals increasing their ability to form an opinion based on numerous sources increasing their literacy of evaluating the reporting of any given source on health policy issues.
If we continue to move down the road of a “health consumer” wanting to shape more and more health care delivery, the authors submit that the “health consumer” becoming more health policy literate is just as important as becoming health information and health literate. As a first step the public has to become familiar with key health policy terms so that they can find discourses linked to various health policy aspects online. That means the media have to familiarize the public with these terms, which so far is not happening. As is the information flow that is not working to produce health policy literate citizens.
The research was in part supported by an internal University of Calgary, Markin Undergraduate Research Program (USRP) award for Sophya Yumakulov.
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