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<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.
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.<ref name="LeeAIMQ02">{{cite journal |title=AIMQ: A methodology for information quality assessment |journal=Information & Management |author=Lee, Y.W.; Strong, D.M.; Kahn, B.K. et al. |volume=40 |issue=2 |pages=133-146 |year=2002 |doi=10.1016/S0378-7206(02)00043-5}}</ref> These studies defined 15 IQ criteria, that were grouped into four dimensions<ref name="WandAnchoring96" /><ref name="WangBeyond15" /> as shown in Table 2.




[[File:Tab2 Al-Jefri FrontInMedicine2018 5.jpg|500px]]
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{| border="0" cellpadding="5" cellspacing="0" width="500px"
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  | style="background-color:white; padding-left:10px; padding-right:10px;"| <blockquote>'''Table 2.''' Dimensions of IQ</blockquote>
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It is probably difficult to fit the HIQ criteria from Table 1—which are centered on trustworthiness and scientific correctness—into the theoretical framework of IQ dimensions in Table 2, which are borrowed from other fields. Recent studies have proposed a categorization of HIQ criteria into classical IQ dimensions focusing on IQ criteria identified through focus group, and focusing on the scientific content of webpages (12).
We undertook this project to define the IQ criteria and dimensions relevant to HIQ. To do so, we have used a mixed approach, identifying relevant HIQ criteria using a theoretical approach broadly based on the existing criteria, the JAMA score, HONcode, and DISCERN, as well as an empirical approach, based on a questionnaire, to rank the importance of the various criteria to the end user. In particular, our aim was to evaluate user perceptions of HIQ criteria and their relative importance in trusting health-related websites. Criteria of HIQ were then classified in dimensions based on the existing literature and, using cluster analysis, the ranking by users.
==Methods==
To design a questionnaire, we first identified relevant IQ criteria. These were based on the existing literature on HIQ, the instruments described above (Table 1) the standard IQ criteria listed in Table 2 and other studies.<ref name="WangBeyond15" /><ref name="BernstamInstruments05">{{cite journal |title=Instruments to assess the quality of health information on the World Wide Web: what can our patients actually use? |journal=International Journal of Medical Informatics |author=Bernstam, E.V.; Shelton, D.M.; Walji, M. et al. |volume=74 |issue=1 |pages=13–19 |year=2005 |doi=10.1016/j.ijmedinf.2004.10.001 |pmid=15626632}}</ref><ref name="ZhangQuality15">{{cite journal |title=Quality of health information for consumers on the web: A systematic review of indicators, criteria, tools, and evaluation results |journal=Journal of the Association for Information Science and Technology |author=Zhang, Y.; Sun, Y.; Xie, B. |volume=66 |issue=10 |pages=2071–84 |year=2015 |doi=10.1002/asi.23311}}</ref> General criteria, such as correct spelling and grammar or the importance of the presence of multimedia or the ranking by the search engine were also included. Other questions are related to the content of the webpage, such as whether the webpage explains disease symptoms, therapies, how to take medications and their side effects, and if responders are wary of webpages offering quick solutions and miracle cures (we defined this as “hyperbole”). The respondents were also asked to rate importance that the information describes treatments based on evidence-based medicine or complementary medicine, as this question would be defining a criterion of reliability (from the scientific point of view) of the information.
The full list of HIQ criteria considered is provided in Table 3, that also reports the questions aiming at identifying the importance of those criteria in trusting a health-related website that were used in the questionnaire. The table also shows which criteria were derived from the ones in the known HIQ tools (JAMA, HON, DISCERN). For most of the criteria, the questions were formulated in the form “I trust a health webpage more if…” or “I prefer webpages that…” that were assessed using a 5-point Likert scale (5 = strongly agree, 4 = somewhat agree, 3 = neither agree not disagree, 2 = somewhat disagree, 1 = strongly disagree). Other questions were aiming at defining the demographics of the sample (gender, age, country, education, whether studying in a medically-related subject of not and others) or internet usage (time spent, main search engine used, device used, how often they searched health information, whether searching symptoms or therapies). The entire questionnaire (42 questions) is available as supplementary online information (Supplementary Table 1).
[[File:Tab3 Al-Jefri FrontInMedicine2018 5.jpg|1000px]]
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| STYLE="vertical-align:top;"|
{| border="0" cellpadding="5" cellspacing="0" width="1000px"
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  | style="background-color:white; padding-left:10px; padding-right:10px;"| <blockquote>'''Table 3.''' Criteria of HIQ and questions used in the survey</blockquote>
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|}
|}
The project was approved on January 26, 2017 by the Research Ethics Panel of the School of Computer Engineering and Mathematics of the University of Brighton. The questionnaire was published online using Google forms and promoted using social media such as Twitter, Facebook, and via email, including students and staff at the University of Brighton and students at the Brighton and Sussex Medical School. We set the Google forms to limit one response per user to avoid duplicate responses. Eligibility criteria for participation were understanding the English language and to be over 18 years of age. A total of 329 anonymous responses were recorded in the period February 1–June 16. We considered this a sufficient number as previous studies in the field of IQ and its dimensions are based on surveys with a number of responses ranging from 235 to 355.<ref name="WangBeyond15" /><ref name="LeeAIMQ02" /><ref name="PittService95">{{cite journal |title=Service Quality: A Measure of Information Systems Effectiveness |journal=MIS Quarterly |author=Pitt, L.F.; Watson, R.T.; Kavan, C.B. |volume=19 |issue=2 |pages=173–87 |year=1995 |doi=10.2307/249687}}</ref>
Statistical analysis of the responses was performed using the statistical analysis software package SPSS, and the specific test is described in the legend of each figure or table. Hierarchical cluster analysis of questionnaire responses (average linkage clustering using the weighted pair group method with arithmetic mean) was performed using GENE-E (Broad Institute, Cambridge, MA) for Windows.


==References==
==References==

Revision as of 21:36, 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)
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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.


Tab2 Al-Jefri FrontInMedicine2018 5.jpg

Table 2. Dimensions of IQ

It is probably difficult to fit the HIQ criteria from Table 1—which are centered on trustworthiness and scientific correctness—into the theoretical framework of IQ dimensions in Table 2, which are borrowed from other fields. Recent studies have proposed a categorization of HIQ criteria into classical IQ dimensions focusing on IQ criteria identified through focus group, and focusing on the scientific content of webpages (12).

We undertook this project to define the IQ criteria and dimensions relevant to HIQ. To do so, we have used a mixed approach, identifying relevant HIQ criteria using a theoretical approach broadly based on the existing criteria, the JAMA score, HONcode, and DISCERN, as well as an empirical approach, based on a questionnaire, to rank the importance of the various criteria to the end user. In particular, our aim was to evaluate user perceptions of HIQ criteria and their relative importance in trusting health-related websites. Criteria of HIQ were then classified in dimensions based on the existing literature and, using cluster analysis, the ranking by users.

Methods

To design a questionnaire, we first identified relevant IQ criteria. These were based on the existing literature on HIQ, the instruments described above (Table 1) the standard IQ criteria listed in Table 2 and other studies.[10][12][13] General criteria, such as correct spelling and grammar or the importance of the presence of multimedia or the ranking by the search engine were also included. Other questions are related to the content of the webpage, such as whether the webpage explains disease symptoms, therapies, how to take medications and their side effects, and if responders are wary of webpages offering quick solutions and miracle cures (we defined this as “hyperbole”). The respondents were also asked to rate importance that the information describes treatments based on evidence-based medicine or complementary medicine, as this question would be defining a criterion of reliability (from the scientific point of view) of the information.

The full list of HIQ criteria considered is provided in Table 3, that also reports the questions aiming at identifying the importance of those criteria in trusting a health-related website that were used in the questionnaire. The table also shows which criteria were derived from the ones in the known HIQ tools (JAMA, HON, DISCERN). For most of the criteria, the questions were formulated in the form “I trust a health webpage more if…” or “I prefer webpages that…” that were assessed using a 5-point Likert scale (5 = strongly agree, 4 = somewhat agree, 3 = neither agree not disagree, 2 = somewhat disagree, 1 = strongly disagree). Other questions were aiming at defining the demographics of the sample (gender, age, country, education, whether studying in a medically-related subject of not and others) or internet usage (time spent, main search engine used, device used, how often they searched health information, whether searching symptoms or therapies). The entire questionnaire (42 questions) is available as supplementary online information (Supplementary Table 1).


Tab3 Al-Jefri FrontInMedicine2018 5.jpg

Table 3. Criteria of HIQ and questions used in the survey

The project was approved on January 26, 2017 by the Research Ethics Panel of the School of Computer Engineering and Mathematics of the University of Brighton. The questionnaire was published online using Google forms and promoted using social media such as Twitter, Facebook, and via email, including students and staff at the University of Brighton and students at the Brighton and Sussex Medical School. We set the Google forms to limit one response per user to avoid duplicate responses. Eligibility criteria for participation were understanding the English language and to be over 18 years of age. A total of 329 anonymous responses were recorded in the period February 1–June 16. We considered this a sufficient number as previous studies in the field of IQ and its dimensions are based on surveys with a number of responses ranging from 235 to 355.[10][11][14]

Statistical analysis of the responses was performed using the statistical analysis software package SPSS, and the specific test is described in the legend of each figure or table. Hierarchical cluster analysis of questionnaire responses (average linkage clustering using the weighted pair group method with arithmetic mean) was performed using GENE-E (Broad Institute, Cambridge, MA) for Windows.

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 10.2 10.3 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. 
  11. ↑ 11.0 11.1 Lee, Y.W.; Strong, D.M.; Kahn, B.K. et al. (2002). "AIMQ: A methodology for information quality assessment". Information & Management 40 (2): 133-146. doi:10.1016/S0378-7206(02)00043-5. 
  12. ↑ Bernstam, E.V.; Shelton, D.M.; Walji, M. et al. (2005). "Instruments to assess the quality of health information on the World Wide Web: what can our patients actually use?". International Journal of Medical Informatics 74 (1): 13–19. doi:10.1016/j.ijmedinf.2004.10.001. PMID 15626632. 
  13. ↑ Zhang, Y.; Sun, Y.; Xie, B. (2015). "Quality of health information for consumers on the web: A systematic review of indicators, criteria, tools, and evaluation results". Journal of the Association for Information Science and Technology 66 (10): 2071–84. doi:10.1002/asi.23311. 
  14. ↑ Pitt, L.F.; Watson, R.T.; Kavan, C.B. (1995). "Service Quality: A Measure of Information Systems Effectiveness". MIS Quarterly 19 (2): 173–87. doi:10.2307/249687. 

Notes

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

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