Health Misinformation and the Integrity of Data—What Is the Role of HI Professionals?

By Lauralyn Kavanaugh-Burke, DrPH, RHIA, CHES, CHTS-IM

In 2018, Dictionary.com declared “misinformation” the word of the year. Initially referring to the realm of politics, misinformation can be used in any domain. Since the start of the COVID-19 pandemic, misinformation has played an integral role in the world’s response to this scourge. Since “information” is health information management’s middle name, it is imperative that we endeavor to ensure that all health information that passes through our respective control or influence have the utmost integrity.

One of many new terms to become prevalent during the COVID-19 pandemic is “infodemic.” The World Health Organization (WHO) defines infodemic as “too much information, including false or misleading information in digital and physical environments during a disease outbreak.”1 Due to the vast amount of information, good and bad, confusion about COVID-19 is rampant.

Data Quality Characteristics

As health informatics and information management professionals, we are all familiar with the 10 characteristics of data quality: accuracy, accessibility, consistency, comprehensiveness, currency, definition, granularity, relevance, precision, and timeliness. In our jobs, within whatever realm we work, we strive to achieve all of these characteristics so that sound business and medical decisions can be made, relevant research can be performed, and meaningful mitigation activities can be enhanced.

Here are two examples of health information quality as it pertains to the COVID-19 pandemic. One, accuracy of health information is vital. Health officials must make additional efforts to refute any false narratives that seek to persuade people from protecting themselves against this virus and future epidemics/pandemics that will occur. Clear messaging on the science regarding the safety and efficacy of vaccines, the impact of social distancing, and the success of specific treatments help to defeat conspiracy theories, rumors, and propaganda that serve no purpose other than to undermine public health efforts and create divisiveness in our society.

Two, data granularity addresses the most fundamental details. Initially, New York state health officials published COVID-19 data on a county-by-county basis. However, to better track incidence and prevalence in specific communities, the health data was then broken down by ZIP code. This data granularity allowed health officials to be more precise in identifying where additional resources were needed.2

Misinformation Terms and Phrases

Health misinformation has been defined as information that is false, inaccurate, or misleading according to the best available evidence at the time.3 Most people do not intentionally spread misinformation but do not have the resources to counter it. Mistrust of scientists, health and medical professionals, and many other authority figures has flourished due to misinformation and disinformation. We have seen how fear, anxiety, and confrontational behavior have impacted the delivery of healthcare around the world.4

Health disinformation takes misinformation several steps further. Dictionary.com defines disinformation as deliberately misleading or biased information; manipulated narrative or facts; propaganda.5 This is where misinformation is intentionally spread with a malicious objective. This malicious intent can involve spreading mistrust about government leaders and healthcare workers, spreading false information and lies about vaccines and medical treatment, and deceiving well-meaning individuals for a political advantage or monetary reward.

Health misinformation, including disinformation, can have a negative effect on health outcomes at the personal and global levels. Hundreds of thousands of cases of COVID-19 and deaths from the pandemic have been predicted and attributed to misinformation about vaccines, prevention efforts, and treatments.6  Herd immunity varies by disease; 95 percent is needed to for measles and 80 percent is needed for polio. A conservative estimate for COVID-19 is 85 percent.7 Unfortunately, studies have shown where only 63 percent will accept a vaccine. However, given correct and reliable health information in a variety of ways, many of the people who were initially ambivalent toward the vaccine would then likely get vaccinated.8

Other phrases that have become prevalent when discussing health misinformation are fake news and deepfake. Fake news is described as purposefully crafted, sensational, emotionally charged, misleading, or totally fabricated information that mimics the form of mainstream news.9 A deepfake is a relatively new method of misinformation of videos, audio recordings, or image manipulations performed by algorithms to replace the original person’s image, likeness, or sound with someone else, usually a celebrity or public figure, so that the secondary video looks genuine and valid.10

Role of Health Information in Disaster Response and Prevention and Mitigation Efforts

The diagram below, designed by the WHO, shows the impact of performing an evaluation and checking on health information/misinformation that people may come across in their daily lives.

Source: https://www.who.int/news-room/spotlight/let-s-flatten-the-infodemic-curve

The WHO has developed a “myth busters” webpage. Formatted along the lines of a popular television show, it provides a comprehensive listing of topics around the COVID-19 pandemic issues where individuals can click to topic, which then provides accurate, timely, and comprehensive videos and graphics that can be downloaded and passed on to others.11 In addition, the WHO has also created a webpage where individuals can report health misinformation depending on the platform where they found it. There are icons and links to Facebook, YouTube, TikTok, Twitter, and Instagram that provide detailed instructions on how to report inappropriate or false information on that social media website.12

How do people identify misinformation? In an article from Business Insider, Meira Gebel states one should consider information suspicious if it seems to good to be true, it plays to your own biases, if it provokes a strong or negative emotional reaction, and/or it is not properly sourced or the statistics seem to be out of date.12 To determine its legitimacy, steps include check that the author and/or organization posting the information and is the original source described. What evidence is provided to support its claim(s), and when was it published? Lastly, do other authentic and reasonable health or news sources also provide the same or similar information?

Digital information literacy expert Mike Caulfield has developed an acronym to assist people to determine misinformation called the SIFT method.14 These critical thinking skills can be applied to evaluate any misinformation, not just within the healthcare arena. The SIFT method entails the following steps:

  1. Stop: When first reading a material on a website, stop and ask if you are familiar with the website or source of that information.
  2. Investigate the sources: Know what you are reading before you read it.
  3. Find better coverage: Look for coverage on the material from other trustworthy and legitimate websites
  4. Trace claims, quotes, and media context to original source: Research the context of the material to make sure this is the accurate version

On a societal or national basis, there are five action steps from the surgeon general’s report on Confronting Health Misinformation that can help healthcare professionals fight this problem.

  • Equip Americans with the tools to identify misinformation, make informed choices about what information they share, and address health misinformation in their communities, in partnership with trusted local leaders.
  • Expand research that deepens our understanding of health misinformation, including how it spreads and evolves; how and why it impacts people; who is most susceptible; and which strategies are most effective in addressing it.
  • Implement product design and policy changes on technology platforms to slow the spread of misinformation.
  • Invest in longer-term efforts to build resilience against health misinformation, such as media, science, digital, data, and health literacy programs and training for health practitioners, journalists, librarians, and others.
  • Convene federal, state, local, territorial, tribal, private, nonprofit, and research partners to explore the impact of health misinformation, identify best practices to prevent and address it, issue recommendations, and find common ground on difficult questions, including appropriate legal and regulatory measures that address health misinformation while protecting user privacy and freedom of expression.15

To counter misinformation, several online organizations have created fact-checking websites, such as Google News Initiative and Poynter’s MediaWise Teen Fact-Checking Network.16 Targeting teens and young adults is an important way to address misinformation because, as any parent will tell you, their teens live on their electronic devices.

Data Integrity Issues

As health information (HI) professionals, the issue of data integrity is always at the forefront of any electronic health data reporting system. From the HI perspective, data integrity refers to “the accuracy and consistency of data over the course of its life” and “may also refer to either a state or a process.”17 However, the author believes that there is a distinct difference between “data integrity” and the “integrity of the data.” According to Dictionary.com, integrity refers to “adherence to moral and ethical principles; soundness of moral character; honesty.”18 This can be applied to health data and information as well. Is the health information provided based upon the moral and ethical principles within healthcare? Is the health data and subsequent health information (e.g., statistics, etc.) honest in its portrayal of the delivery of healthcare services, the community which is served, and based upon sound healthcare formulas and data definitions? Is it consistently available and accessible to researchers and community leaders to make pertinent and timely decisions that affect their populations of interest?

So important is robust health data to national security that Executive Order (EO) 13994 Ensuring a Data-Driven Response to COVID-19 and Future High-Consequence Public Health Threats was signed by President Biden on January 21, 2021. It directs the attorney general; the secretaries of defense, commerce, labor, health and human services, and education; and the directors of the Office of Management and Budget, the Office of National Intelligence, the Office of Science and Technology Policy, and the National Science Foundation to work with the COVID-19 response coordinator to make data relevant to high-consequence public health threats publicly available and accessible in order to effectively prevent, detect, and respond to future biological threats, both domestically and internationally.19

Unfortunately, public health systems vary dramatically from healthcare data systems by states and their counties. EO 13994 asserts that COVID-19 health data must be collected, analyzed, and shared with state, local, tribal, and territorial authorities. As with many of the challenges faced by the implementation of the electronic health record (EHR), public health data systems are also faced with similar challenges. There are technological gaps, policy and organizational discrepancies, and, most of all, federal, state, local, tribal, and territorial political logistics. This pandemic has truly shown the inefficiencies, inequities, incompetencies, and inadequacies of current health data systems, public or otherwise. The Public Health Data Systems Task Force has been established to prepare not only for the short-term needs of the COVID-19 pandemic but also a long-term sustainable process to advance current public health data systems into the 21st century.20 The dismal decrease in investments to the US public health infrastructure over the last several decades has now come back to haunt us.

Unfortunately, some states have stopped or limited the previously daily reported publication of COVID-19 cases, testing, admissions, positivity, and death rates as the delta variant has become more prevalent. This is an “integrity of data” issue. This causes significant concerns for hospitals and healthcare providers, local elected officials, and school boards trying to plan and mitigate additional exposure, cases, hospitalizations, and deaths. These officials, mostly from conservative states, initially started decreasing public health information when the third wave of the pandemic was receding, saying the need for information wasn’t as great. However, given that the fourth wave (triggered by the delta variant) is exploding in every part of the United States, the limiting of specific and detailed health data into generalized summary reports on a weekly or less basis, continues to confound health, government, and policy experts. Many of these states are leading the nation in the number of new COVID-19 cases, positivity rates, admissions, and deaths and have the lowest vaccination rates. Other states, those that have a more proactive healthcare philosophy, have typically provided additional COVID-19 health data to assist in resource allocation, strengthening public health prevention measures, and testing and vaccination efforts leading to lower rates of hospital admissions and deaths from COVID-19.21

This is the area where HI professionals can become more active: working with the regional and state HI professional association’s advocacy groups to ensure how the health data (that originates from local hospitals and other healthcare providers) are used in their states. Are the state departments of health or other health administrative agencies supplying the necessary detailed health information on a current and timely basis for leaders and lay people to make informed decisions? In other words, what is the level of integrity of the health data/information? Are the health data consistent with federal or established guidelines regarding case definitions, process reporting, and sound epidemiological principles and biostatistical formulas? HI component state associations (CSA) relationships with other health/medical professional groups, such as the state hospital association, the state medical and nursing associations, etc., can strengthen the position that comprehensive, relevant, and timely health information is an essential part of combatting COVID-19 and future public health threats that threaten our economy, national security, and the lives of the citizenry.

So important is this priority that the Centers for Disease Control and Prevention (CDC) has now established a new Center for Forecasting and Outbreak Analytics. In order to meet the demands of local, state, and federal decision-makers, this center will combine seasoned biostatistical disease modelers, key public health and emergency response professionals, high-tech public health data, and superior communications protocols. The CDC states, “The new center will accelerate access to and use of data for public health decision-makers who need information to mitigate the effects of disease threats, such as social and economic disruption. The center will prioritize equity and accessibility, while serving as a hub for innovation and research on disease modeling.”22

Misinformation and disinformation are is not 21st century issues. The infodemic cannot be stopped. However, it can certainly be decreased, slowed, and countered with reliable, consistent, trustworthy, clear, and pertinent health information about the pandemic, vaccines, treatments, and patient outcomes, as well as the impact on our local communities and national security.

Lauralyn Kavanaugh-Burke ([email protected]) is an associate professor in the Division of Health Informatics and Information Management at Florida A&M University.

Notes
  1. World Health Organization (WHO). 2021. “Infodemic”. https://www.who.int/health-topics/infodemic#tab=tab_1. Accessed August 19, 2021.
  2. Azad, A. and R. Baharaeen. 2020. “CDC and 11 states acknowledge mixing results of viral and antibody tests.” https://www.cnn.com/2020/05/22/health/cdc-mixing-coronavirus-tests/index.html. Accessed August 13, 2021.
  3. Murthy, V. H. 2021. “Confronting Health Misinformation: The U. S. Surgeon General’s Advisory on Building a Health Information Environment.” US Department of Health and Human Services, Office of the Surgeon General. https://www.hhs.gov/sites/default/files/surgeon-general-misinformation-advisory.pdf. Accessed July 27, 2021.
  4. World Health Organization (WHO). 2021b. “Fighting misinformation in the time of COVID-19, one click at a time.” https://www.who.int/news-room/feature-stories/detail/fighting-misinformation-in-the-time-of-covid-19-one-click-at-a-time. Accessed August 7, 2021.
  5. Dictionary.com. 2021. “Misinformation” vs. “Disinformation”: Get Informed On The Difference.” https://www.dictionary.com/e/misinformation-vs-disinformation-get-informed-on-the-difference/. Accessed August 10, 2021.
  6. Murthy.
  7. Macmillan, C. 2021. “Herd Immunity: Will We Ever Get There?” https://www.yalemedicine.org/news/herd-immunity. Accessed September 27, 2021.
  8. WHO 2021b.
  9. University of Washington Library Guides. 2021. “News: Fake News, Misinformation & Disinformation.” https://guides.lib.uw.edu/c.php?g=345925&p=7772376. Accessed July 27, 2021.
  10. Ibid.
  11. World Health Organization (WHO). 2021c. “Coronavirus disease (COVID-19) advice for the public: Mythbusters.” https://www.who.int/emergencies/diseases/novel-coronavirus-2019/advice-for-public/myth-busters. Accessed August 14, 2021.
  12. World Health Organization (WHO). 2021d. “How to report misinformation online.” https://www.who.int/campaigns/connecting-the-world-to-combat-coronavirus/how-to-report-misinformation-online. Accessed August 14, 2021.
  13. Gebel, M. 2021. “Misinformation vs. disinformation: What to know about each form of false information, and how to spot them online.” https://www.businessinsider.com/misinformation-vs-disinformation. Accessed August 13, 2021.
  14. Caufield, M. 2019. “Sifting Through the Coronavirus Pandemic.” https://infodemic.blog/. Accessed August 3, 2021.
  15. Murthy.
  16. Gebel.
  17. University of Illinois Chicago (UIC). 2021. “What Is Data Integrity and Why Is It Important in Healthcare?”. https://healthinformatics.uic.edu/blog/data-integrity/. Accessed August 21, 2021.
  18. Dictionary.com.
  19. Executive Order 13994 of Jan 21, 2021, Ensuring a Data-Driven Response to COVID-19 and Future High-Consequence Public Health Threats. Code of Federal Regulations (2021): 7189-7191. Vol. 86 No. 15, January 26, 2021. https://www.federalregister.gov/documents/2021/01/26/2021-01849/ensuring-a-data-driven-response-to-covid-19-and-future-high-consequence-public-health-threats. Accessed July 7, 2021.
  20. Miri, A. and D. Webb. 2021. “Public Health Data Systems Hearing: Ensuring a Data-Driven Response to COVID-19.” https://www.healthit.gov/buzz-blog/health-it/public-health-data-systems-hearing-ensuring-a-data-driven-response-to-covid-19. Accessed July 7, 2021.
  21. Funk, J. 2021. “States scale back virus reporting just as cases surge.” https://apnews.com/article/health-coronavirus-pandemic-f9c58c50f565e707be9bedfa9a82319e . Accessed August 22, 2021.
  22. Centers for Disease control and Prevention (CDC). 2021. “CDC Stands Up New Disease Forecasting Center”. https://www.cdc.gov/media/releases/2021/p0818-disease-forecasting-center.html. Accessed 9/8/2021.
Resources

Staats, B. 2021. “Misinformation, Disinformation, Malinformation: What’s the difference?”. ELibrary News University of Minnesota. https://minitex.umn.edu/news/elibrary-minnesota/2021-02/misinformation-disinformation-malinformation-whats-difference. Accessed August 13, 2021.

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