Difference between revisions of "Journal:What Is health information quality? Ethical dimension and perception by users"

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An important issue, and one that is not assessed by the existing HIQ instruments, is whether websites informing the public on therapies mention therapies approved by regulatory agencies or public health authorities, or non-approved ones. Drug approval requires a high level of evidence of efficacy and benefit/risk ratio, an approach termed “evidence-based medicine” (EBM).<ref name="HowickThePhil11">{{cite book |title=The Philosophy of Evidence-Based Medicine |author=Howick, J. |publisher=John Wiley & Sons |year=2011 |isbn=9781405196673}}</ref> In a way, this is related to the reliability of the information. For instance, a website describing AIDS as a disease due to the HIV virus that can be treated with antiretroviral therapy is higher quality than one stating that AIDS is not due to a virus and should be treated with nutritional supplements.<ref name="SmithHIV07">{{cite journal |title=HIV denial in the Internet era |journal=PLoS Medicine |author=Smith, T.C.; Novella, S.P. |volume=4 |issue=8 |pages=e256 |year=2007 |doi=10.1371/journal.pmed.0040256 |pmid=17713982 |pmc=PMC1949841}}</ref>
An important issue, and one that is not assessed by the existing HIQ instruments, is whether websites informing the public on therapies mention therapies approved by regulatory agencies or public health authorities, or non-approved ones. Drug approval requires a high level of evidence of efficacy and benefit/risk ratio, an approach termed “evidence-based medicine” (EBM).<ref name="HowickThePhil11">{{cite book |title=The Philosophy of Evidence-Based Medicine |author=Howick, J. |publisher=John Wiley & Sons |year=2011 |isbn=9781405196673}}</ref> In a way, this is related to the reliability of the information. For instance, a website describing AIDS as a disease due to the HIV virus that can be treated with antiretroviral therapy is higher quality than one stating that AIDS is not due to a virus and should be treated with nutritional supplements.<ref name="SmithHIV07">{{cite journal |title=HIV denial in the Internet era |journal=PLoS Medicine |author=Smith, T.C.; Novella, S.P. |volume=4 |issue=8 |pages=e256 |year=2007 |doi=10.1371/journal.pmed.0040256 |pmid=17713982 |pmc=PMC1949841}}</ref>


Health information quality should be seen in the wider context of information quality (IQ) generally. The latter has been extensively studied for its applications in business and manufacturing. Information quality is generally considered as a concept with multiple dimensions (6); depending on an author's philosophical view-point, information quality can have different attributes and characteristics (7, 8). Several studies have developed IQ frameworks based on the definition of IQ dimensions (6). The best known of these frameworks was developed by Wang (9) and Wang (10), based on a survey among 355 Masters in Business and Administration alumni, aiming to capture aspects of IQ that are important for consumers in the business field. A second study by the same group involved 52 information professionals from the financial, healthcare, and manufacturing sectors (11). These studies defined 15 IQ criteria, that were grouped into four dimensions (9, 10) as shown in Table 2.
Health information quality should be seen in the wider context of information quality (IQ) generally. The latter has been extensively studied for its applications in business and manufacturing. Information quality is generally considered as a concept with multiple dimensions<ref name="IllariInfo14">{{cite book |chapter=Information Quality, Data and Philosophy |title=The Philosophy of Information Quality |author=Illari, P.; Floridi, L. |volume=358 |publisher=Springer |year=2014 |isbn=9783319071213 |doi=10.1007/978-3-319-07121-3_2}}</ref>; depending on an author's philosophical view-point, information quality can have different attributes and characteristics.<ref name="KleinUser16">{{cite journal |title=User Perceptions of Data Quality: Internet and Traditional Text Sources |journal=Journal of Computer Information Systems |author=Klein, B.D. |volume=41 |issue=4 |pages=9–15 |year=2001 |doi=10.1080/08874417.2001.11647016}}</ref><ref name="KnightDevelop05">{{cite journal |title=Developing a Framework for Assessing Information Quality on the World Wide Web |journal=Informing Science: The International Journal of an Emerging Transdiscipline |author=Knight, S.-A.; Burn, J. |volume=8 |pages=159–72 |year=2005 |doi=10.28945/493}}</ref> Several studies have developed IQ frameworks based on the definition of IQ dimensions.<ref name="IllariInfo14" /> The best known of these frameworks was developed by Wang<ref name="WandAnchoring96">{{cite journal |title=Anchoring data quality dimensions in ontological foundations |journal=Communications of the ACM |author=Wand, Y.; Wang, R.Y. |volume=39 |issue=11 |pages=86-95 |year=1996 |doi=10.1145/240455.240479}}</ref> and Wang<ref name="WangBeyond15">{{cite journal |title=Beyond Accuracy: What Data Quality Means to Data Consumers |journal=Journal of Management Information Systems |author=Wang, R.Y.; Strong, D.M. |volume=12 |issue=4 |pages=5–33 |year=2015 |doi=10.1080/07421222.1996.11518099}}</ref>, based on a survey among 355 Masters in Business and Administration alumni, aiming to capture aspects of IQ that are important for consumers in the business field. A second study by the same group involved 52 information professionals from the financial, healthcare, and manufacturing sectors (11). These studies defined 15 IQ criteria, that were grouped into four dimensions<ref name="WandAnchoring96" /><ref name="WangBeyond15" /> as shown in Table 2.
 
 


==References==
==References==

Revision as of 19:50, 18 March 2019

Full article title What Is health information quality? Ethical dimension and perception by users
Journal Frontiers in Medicine
Author(s) Al-Jefri, Majed; Evans, Roger; Uchyigit, Gulden; Ghezzi, Pietro
Author affiliation(s) University of Brighton, Brighton and Sussex Medical School
Primary contact Email: pietro dot ghezzi at gmail dot com
Editors Sampaio, Cristina
Year published 2018
Volume and issue 5
Page(s) 260
DOI 10.3389/fmed.2018.00260
ISSN 2296-858X
Distribution license Creative Commons Attribution 4.0 International
Website https://www.frontiersin.org/articles/10.3389/fmed.2018.00260/full
Download https://www.frontiersin.org/articles/10.3389/fmed.2018.00260/pdf (PDF)

Abstract

Introduction: The popularity of seeking health information online makes information quality (IQ) a public health issue. The present study aims at building a theoretical framework of health information quality (HIQ) that can be applied to websites and defines which IQ criteria are important for a website to be trustworthy and meet users' expectations.

Methods: We have identified a list of HIQ criteria from existing tools and assessment criteria and elaborated them into a questionnaire that was promoted via social media and, mainly, the university. Responses (329) were used to rank the different criteria for their importance in trusting a website and to identify patterns of criteria using hierarchical cluster analysis.

Results: HIQ criteria were organized in five dimensions based on previous theoretical frameworks, as well as on how they cluster together in the questionnaire response. We could identify a top-ranking dimension (scientific completeness) that describes what the user is expecting to know from the websites (in particular: description of symptoms, treatments, side effects). Cluster analysis also identified a number of criteria borrowed from existing tools for assessing HIQ that could be subsumed to a broad “ethical” dimension (such as conflict of interests, privacy, advertising policies) that were, in general, ranked of low importance by the participants. Subgroup analysis revealed significant differences in the importance assigned to the various criteria based on gender, language, and whether or not a biomedical educational background was evident.

Conclusions: We identified criteria of HIQ and organized them in dimensions. We observed that ethical criteria, while regarded highly in the academic and medical environment, are not considered highly by the public.

Keywords: internet, information quality, ethics, online information, public health

Introduction

With the diffusion of the internet, many have been concerned that, due to its unregulated and unfiltered nature, it could misinform or disinform the public. The lack of widely used search engines (Google was founded in 1998) left entirely up to the users which websites to trust among the relatively few ones (compared to 2018) available. These concerns led to the development, in the late 1990s, of instruments and organizations to assess health information quality (HIQ) of websites, including the Journal of the American Medical Association (JAMA) criteria[1], DISCERN[2], and the criteria for meeting the health-on-the-net (HON) code of conduct (3).[3] These instruments were developed for different purposes: the JAMA and DISCERN tools were aimed at providing customers with instruments to assess websites[1][2]; the HON criteria are used by the HON foundation to certify health websites with the display of the HONCode quality seal, and this was originally aimed at organizations to help them develop websites.[3] The criteria of HIQ considered by these three approaches are listed in Table 1.


Tab1 Al-Jefri FrontInMedicine2018 5.jpg

Table 1. Established HIQ instruments and criteria

There are no data available to know how many information seekers have used these tools to make assessments. On the other hand, the high number of citations in the scientific literature for the JAMA (1100) and DISCERN (600) tools indicate that these are also widely used, particularly the JAMA criteria, in academic research analyzing HIQ. It should be noted, however, that DISCERN was developed by an expert panel, but then it was actually tested on 13 self-help group members.[2]

An important issue, and one that is not assessed by the existing HIQ instruments, is whether websites informing the public on therapies mention therapies approved by regulatory agencies or public health authorities, or non-approved ones. Drug approval requires a high level of evidence of efficacy and benefit/risk ratio, an approach termed “evidence-based medicine” (EBM).[4] In a way, this is related to the reliability of the information. For instance, a website describing AIDS as a disease due to the HIV virus that can be treated with antiretroviral therapy is higher quality than one stating that AIDS is not due to a virus and should be treated with nutritional supplements.[5]

Health information quality should be seen in the wider context of information quality (IQ) generally. The latter has been extensively studied for its applications in business and manufacturing. Information quality is generally considered as a concept with multiple dimensions[6]; depending on an author's philosophical view-point, information quality can have different attributes and characteristics.[7][8] Several studies have developed IQ frameworks based on the definition of IQ dimensions.[6] The best known of these frameworks was developed by Wang[9] and Wang[10], based on a survey among 355 Masters in Business and Administration alumni, aiming to capture aspects of IQ that are important for consumers in the business field. A second study by the same group involved 52 information professionals from the financial, healthcare, and manufacturing sectors (11). These studies defined 15 IQ criteria, that were grouped into four dimensions[9][10] as shown in Table 2.


References

  1. 1.0 1.1 Silberg, W.M.; Lundberg, G.D.; Musacchio, R.A. (1997). "Assessing, controlling, and assuring the quality of medical information on the Internet: Caveant lector et viewor--Let the reader and viewer beware". JAMA 277 (15): 1244–5. doi:10.1001/jama.1997.03540390074039. PMID 9103351. 
  2. 2.0 2.1 2.2 Charnock, D.; Shepperd, S.; Needham, G.; Gann, R. (1999). "DISCERN: An instrument for judging the quality of written consumer health information on treatment choices". Journal of Epidemiology and Community Health 53 (2): 105–11. doi:10.1136/jech.53.2.105. PMC PMC1756830. PMID 10396471. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1756830. 
  3. 3.0 3.1 Boyer, C.; Selby, M.; Scherrer, J.R.; Appel, R.D. (1998). "The Health On the Net Code of Conduct for medical and health Websites". Computers in Biology and Medicine 28 (5): 603-10. doi:10.1016/S0010-4825(98)00037-7. PMID 9861515. 
  4. Howick, J. (2011). The Philosophy of Evidence-Based Medicine. John Wiley & Sons. ISBN 9781405196673. 
  5. Smith, T.C.; Novella, S.P. (2007). "HIV denial in the Internet era". PLoS Medicine 4 (8): e256. doi:10.1371/journal.pmed.0040256. PMC PMC1949841. PMID 17713982. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1949841. 
  6. 6.0 6.1 Illari, P.; Floridi, L. (2014). "Information Quality, Data and Philosophy". The Philosophy of Information Quality. 358. Springer. doi:10.1007/978-3-319-07121-3_2. ISBN 9783319071213. 
  7. Klein, B.D. (2001). "User Perceptions of Data Quality: Internet and Traditional Text Sources". Journal of Computer Information Systems 41 (4): 9–15. doi:10.1080/08874417.2001.11647016. 
  8. Knight, S.-A.; Burn, J. (2005). "Developing a Framework for Assessing Information Quality on the World Wide Web". Informing Science: The International Journal of an Emerging Transdiscipline 8: 159–72. doi:10.28945/493. 
  9. 9.0 9.1 Wand, Y.; Wang, R.Y. (1996). "Anchoring data quality dimensions in ontological foundations". Communications of the ACM 39 (11): 86-95. doi:10.1145/240455.240479. 
  10. 10.0 10.1 Wang, R.Y.; Strong, D.M. (2015). "Beyond Accuracy: What Data Quality Means to Data Consumers". Journal of Management Information Systems 12 (4): 5–33. doi:10.1080/07421222.1996.11518099. 

Notes

This presentation is faithful to the original, with only a few minor changes to presentation.