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The Challenge of Providing the Public with Actionable Information during a Pandemic

Published online by Cambridge University Press:  01 January 2021

Leslie E. Gerwin
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Extract

Can a country with a free press and a robust political debate provide its citizens with actionable information so that they can protect themselves from a threat to their health or safety? By actionable information, I mean accurate facts and reasonable interpretations of those facts upon which an individual should rely in making reason-based decisions. In the context of public health, this includes information that allows an individual to weigh the risk to one’s self, family, and community before deciding to act in an uncertain environment under threatening conditions. The recent H1N1 pandemic, and in particular the government’s campaign for public acceptance of the vaccine, highlights the challenges in ensuring that individuals receive accurate information and perceive that such information should be the basis on which to make potential life-saving decisions.

Type
Independent
Information
Journal of Law, Medicine & Ethics , Volume 40 , Issue 3 , Fall 2012 , pp. 630 - 654
Copyright
Copyright © American Society of Law, Medicine and Ethics 2012

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For example, while the national narrative focused on vaccine shortages the New York Times included a story in its N.Y./Region section about New York City parents opting out of vaccinating their children. Medina, J., “City Parents Opting Out of Swine Flu Vaccine,” New York Times, October 28, 2009. available at <http://www.nytimes.com/2009/10/29/nyregion/29vaccine.html>(last visited August 15, 2012).(last+visited+August+15,+2012).>Google Scholar
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One notable example of potentially misleading media messaging is the reporting on the findings of Harvard School of Public Health poll on vaccine availability. Many stories focused on the November 6 headline announcing that “Poll Finds Two-thirds of Parents and High-Priority Adults Who Tried to Get H1N1 Vaccine Were Unable to Get It.” The shortfall appeared far more dramatic than the buried explanation that only 17% of adults actually “tried to get the H1N1.” In addition to those who posted or “tweeted” only the headline, some news stories failed even to bury an explanatory context. See, for example, UPI.com, “Health News: Poll: Many Can't Get H1N1 Vaccine,” November 9, 2009, available at <http://www.upi.com/Health_News/2009/11/09/Poll-Many-cant-get-H1N1-vac*-cine/UPI-63371257743410/>(last visited August 11, 2012).(last visited August 11, 2012).' href=https://scholar.google.com/scholar?q=One+notable+example+of+potentially+misleading+media+messaging+is+the+reporting+on+the+findings+of+Harvard+School+of+Public+Health+poll+on+vaccine+availability.+Many+stories+focused+on+the+November+6+headline+announcing+that+“Poll+Finds+Two-thirds+of+Parents+and+High-Priority+Adults+Who+Tried+to+Get+H1N1+Vaccine+Were+Unable+to+Get+It.”+The+shortfall+appeared+far+more+dramatic+than+the+buried+explanation+that+only+17%+of+adults+actually+“tried+to+get+the+H1N1.”+In+addition+to+those+who+posted+or+“tweeted”+only+the+headline,+some+news+stories+failed+even+to+bury+an+explanatory+context.+See,+for+example,+UPI.com,+“Health+News:+Poll:+Many+Can't+Get+H1N1+Vaccine,”+November+9,+2009,+available+at+(last+visited+August+11,+2012).>Google Scholar
Although the government would “look better” if it had tried to distinguish demand from need, to its credit, it appeared less interested in self-promotion if it meant highlighting the public's reluctance to take the vaccine. By challenging the demand narrative, the government would be acknowledging that public fear was tempering demand and thus, potentially undermining its message that the vaccine offered the best protection against getting sick and infecting others. Department of Health and Human Services, “Flu.gov Prevention and Vaccination,” available at <http://www.flu.gov/prevention-vaccination/index.html>(last visited August 13, 2012).(last visited August 13, 2012).' href=https://scholar.google.com/scholar?q=Although+the+government+would+“look+better”+if+it+had+tried+to+distinguish+demand+from+need,+to+its+credit,+it+appeared+less+interested+in+self-promotion+if+it+meant+highlighting+the+public's+reluctance+to+take+the+vaccine.+By+challenging+the+demand+narrative,+the+government+would+be+acknowledging+that+public+fear+was+tempering+demand+and+thus,+potentially+undermining+its+message+that+the+vaccine+offered+the+best+protection+against+getting+sick+and+infecting+others.+Department+of+Health+and+Human+Services,+“Flu.gov+Prevention+and+Vaccination,”+available+at+(last+visited+August+13,+2012).>Google Scholar
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Arguably, the Obama Administration opened itself to potential criticism for overreaching by when it claimed its intention was to vaccinate a record number of Americans, including at least 100 million “first timers.” In articulating such an ambitious goal, officials ignored Neustadt and Fineberg's caution to avoid pronouncements that can undermine public confidence. See Neustadt, Fineberg, , supra note 4, at 90–92. The inflated vaccine campaign goal together with the overpromise of vaccine production likely contributed to the failure narrative when the government met neither target.Google Scholar
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The criticism was not limited to the issues associated with the government's handling of the vaccine. When the Wall Street Journal reported on the Government's promotion of effective non pharmacological disease-containing strategies, the online version of the story elicited many politically motivated comments from readers. See “Fighting Flu Without Big Gun,” available at <http://online.wsj.com/article/SB125245538175894251.html#articleTabs%3Dcomments>(last visited August 1, 2012).(last visited August 1, 2012).' href=https://scholar.google.com/scholar?q=The+criticism+was+not+limited+to+the+issues+associated+with+the+government's+handling+of+the+vaccine.+When+the+Wall+Street+Journal+reported+on+the+Government's+promotion+of+effective+non+pharmacological+disease-containing+strategies,+the+online+version+of+the+story+elicited+many+politically+motivated+comments+from+readers.+See+“Fighting+Flu+Without+Big+Gun,”+available+at+(last+visited+August+1,+2012).>Google Scholar
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To be sure, a potential benefit of the crisis was that it stimulated some reporting on important subjects that do not ordinarily command the attention of the general public, among them the promise of new vaccine development technologies and domestic production capacity. At the same time, the public can be easily misled when complex and subtle issues are summarized in a couple of paragraphs. For example, when the general media reported that the cell technology has been approved for use in Europe or that the U.S. regulatory process is unpredictable and expensive, it deliberately or inadvertently created the impression that the government did or was doing something wrong in not facilitating use of the new process. The stories did not usually cite the questions in the medical literature about the benefits of the cell technology. See e.g. Roos, R., “Trial Answers Some, Not All, Questions on Cell-Based Flu Vaccines,” Center for Infectious Disease Research and Policy (CIDRAP), October 6, 2010, available at <http://www.cidrap.umn.edu/cidrap/content/influenza/general/news/oct0610cell*-cult2.html>(last visited August 1, 2012). See also, Zoler, M.L., H1N1 Vaccine Snags Highlight Limits of Egg-Based Production,” The Lancet website, October 30, 2009, available at <http://www.thelancet.com/H1N1-flu/egmn/0c03c6c6>(last visited August 15, 2012).(last+visited+August+1,+2012).+See+also,+Zoler,+M.L.,+H1N1+Vaccine+Snags+Highlight+Limits+of+Egg-Based+Production,”+The+Lancet+website,+October+30,+2009,+available+at+(last+visited+August+15,+2012).>Google Scholar
It is arguable that one reason the government “yielded” to public fear and did allow use of an adjuvant to produce more doses of vaccine was that it could not rely on most news outlets to engage in detailed scientific reporting to explain why American's fear of adjuvants, which had been used safely in European vaccines for years, was scientifically unfounded. Andrew Pollack's New York Times story is a notable exception for its detailed analysis of the issues. Pollack, A., “In Vaccine Additive, Benefit and Doubt,” New York Times, September 22, 2009, available at <http://query.nytimes.com/gst/fullpage.html?res=9806E6D6153DF931A1575AC0A96F9C8B63&pagewanted=all>(last visited August 14, 2012). Months after the virus had peaked, a New York Times online summary implied approval of the government's “cautious approach.” It noted that although purchasing the chemical “booster” (adjuvants) “could have stretched the first 25 million vaccine doses into 100 million,” the government chose not to use them “for fear of triggering a backlash among Americans made nervous by the messages of the antivaccine movement.” The New York Times, “Swine Flu (H1N1 Virus),” January 4, 2010, available at <http://topics.nytimes.com/top/reference/timestopics/subjects/i/influenza/swine_influenza/index.html?>(last visited August 1, 2012). This critique is not suggesting that the government should refrain from investing in improving vaccine development processes. At the same time, government officials, together with a broad coalition of interests, will need to develop effective public education efforts to reduce the fears of the new vaccines. The H1N1 experience suggests that the science may prove easier than achieving either the political consensus for such an investment or the public's acceptance.(last visited August 14, 2012). Months after the virus had peaked, a New York Times online summary implied approval of the government's “cautious approach.” It noted that although purchasing the chemical “booster” (adjuvants) “could have stretched the first 25 million vaccine doses into 100 million,” the government chose not to use them “for fear of triggering a backlash among Americans made nervous by the messages of the antivaccine movement.” The New York Times, “Swine Flu (H1N1 Virus),” January 4, 2010, available at (last visited August 1, 2012). This critique is not suggesting that the government should refrain from investing in improving vaccine development processes. At the same time, government officials, together with a broad coalition of interests, will need to develop effective public education efforts to reduce the fears of the new vaccines. The H1N1 experience suggests that the science may prove easier than achieving either the political consensus for such an investment or the public's acceptance.' href=https://scholar.google.com/scholar?q=It+is+arguable+that+one+reason+the+government+“yielded”+to+public+fear+and+did+allow+use+of+an+adjuvant+to+produce+more+doses+of+vaccine+was+that+it+could+not+rely+on+most+news+outlets+to+engage+in+detailed+scientific+reporting+to+explain+why+American's+fear+of+adjuvants,+which+had+been+used+safely+in+European+vaccines+for+years,+was+scientifically+unfounded.+Andrew+Pollack's+New+York+Times+story+is+a+notable+exception+for+its+detailed+analysis+of+the+issues.+Pollack,+A.,+“In+Vaccine+Additive,+Benefit+and+Doubt,”+New+York+Times,+September+22,+2009,+available+at+(last+visited+August+14,+2012).+Months+after+the+virus+had+peaked,+a+New+York+Times+online+summary+implied+approval+of+the+government's+“cautious+approach.”+It+noted+that+although+purchasing+the+chemical+“booster”+(adjuvants)+“could+have+stretched+the+first+25+million+vaccine+doses+into+100+million,”+the+government+chose+not+to+use+them+“for+fear+of+triggering+a+backlash+among+Americans+made+nervous+by+the+messages+of+the+antivaccine+movement.”+The+New+York+Times,+“Swine+Flu+(H1N1+Virus),”+January+4,+2010,+available+at+(last+visited+August+1,+2012).+This+critique+is+not+suggesting+that+the+government+should+refrain+from+investing+in+improving+vaccine+development+processes.+At+the+same+time,+government+officials,+together+with+a+broad+coalition+of+interests,+will+need+to+develop+effective+public+education+efforts+to+reduce+the+fears+of+the+new+vaccines.+The+H1N1+experience+suggests+that+the+science+may+prove+easier+than+achieving+either+the+political+consensus+for+such+an+investment+or+the+public's+acceptance.>Google Scholar
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Many challengers insisted that their legal case was grounded in their right to make their own informed choice of whether to take the vaccine. The subtle distinction between objecting to the mandatory nature of the order and not wanting to take an unsafe vaccine was not emphasized in news reports. Another plaintiff insisted that such a decision should be made by the elected legislature (presumably rather than the governor or his appointed health officers.) See Hartocollis, A., “Mandatory Flu Vaccination for N.Y. Health Workers Is Criticized,” New York Times, October 14, 2009, available at <http://www.nytimes.com/2009/10/14/health/policy/14vaccine.html>(last visited August 1, 2012). Notably, without a requirement less than 40% of health care workers reportedly took the H1N1 vaccine. See Editorial, “They Should Know Better,” New York Times, April 13, 2010, available at <http://www.nytimes.com/2010/04/14/opinion/14wed3.html?ref=swineinfluenza>(last visited August 1, 2012).(last+visited+August+1,+2012).+Notably,+without+a+requirement+less+than+40%+of+health+care+workers+reportedly+took+the+H1N1+vaccine.+See+Editorial,+“They+Should+Know+Better,”+New+York+Times,+April+13,+2010,+available+at+(last+visited+August+1,+2012).>Google Scholar
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Kirkland notes that critics claim “that the current system is beset with Conflicts of interest, since the same government agencies promote vaccine as well as regulate adverse events.” Id. Although the critics' claim is not entirely accurate, since the FDA approves and monitors vaccine safety while the CDC heads up immunization campaigns, it illustrates the public's perception that the huge government bureaucracy (both agencies are a part of the Department of Health and Human Services) is viewed as a collaborative whole. Kirkland also found the perception that the vaccine manufacturers work “too closely with government policy makers” to be a “frequent criticism.” Id. See also supra accompanying notes 93–95.Google Scholar
Upon issuance of the first emergency declaration by the Acting Secretary of the Department of Health and Human Services, Homeland Security Secretary Janet Napolitano sought to reassure the public by claiming that the declaration was “standard operating procedure.” The news of her press conference reported that she explained, “It's like declaring one for a hurricane… It means we can release funds and take other measures. The hurricane may not actually hit.” McNeil, D. G. Jr., “U.S. Declares Public Health Emergency Over Swine Flu,” New York Times, April 26, 2009, available at <http://www.nytimes.com/2009/04/27/world/27flu.html>(last visited August 18, 2012).(last visited August 18, 2012).' href=https://scholar.google.com/scholar?q=Upon+issuance+of+the+first+emergency+declaration+by+the+Acting+Secretary+of+the+Department+of+Health+and+Human+Services,+Homeland+Security+Secretary+Janet+Napolitano+sought+to+reassure+the+public+by+claiming+that+the+declaration+was+“standard+operating+procedure.”+The+news+of+her+press+conference+reported+that+she+explained,+“It's+like+declaring+one+for+a+hurricane…+It+means+we+can+release+funds+and+take+other+measures.+The+hurricane+may+not+actually+hit.”+McNeil,+D.+G.+Jr.,+“U.S.+Declares+Public+Health+Emergency+Over+Swine+Flu,”+New+York+Times,+April+26,+2009,+available+at+(last+visited+August+18,+2012).>Google Scholar
During the year after the H1N1 virus first appeared, the emergency declarations were plentiful. The Acting Secretary of the Department of Health and Human Services issued the first declaration of a “public health emergency” on April 26, 2009 pursuant to Section 319 of the Public Health Service Act (24 U.S.C. Sec. 247d). These declarations automatically expire after 90 days unless renewed. Once confirmed, Secretary Kathleen Sebelius issued subsequent declarations on July 24, October 1, and December 28, 2009 and March 22, 2010. This last declaration was allowed to expire. Only in the final announcement did the Secretary amend the statement of declaration to add the explanation, “the Department should use all available tools to ensure that we are prepared.” Department of Health and Human Services, “Renewal of a Determination that a Public Health Emergency Exists,” March 22, 2010, available at <http://www.hhs.gov/secretary/phe_swh1n1.html>(with links to all declarations) (last visited August 18, 2012). In addition, on October 24, 2009, President Obama declared the 2009 H1N1 Influenza a “national emergency” under The National Emergencies Act and Section 1135 of the Social Security Act (50 U.S.C. 1601 et seq and 42 U.S.C. 1320b-5), available at <http://www.whitehouse.gov/the-press-office/declaration-a-national-emergency-with-respect-2009–h1n1-influenza-pandemic-0>(last visited August 18, 2012). Declarations by both the DHH Secretary and the President were required to allow the Secretary to “waive or modify Federal requirements as listed in section 1135. After the Secretary invokes section 1135, health care facilities may petition for 1135 waivers in response to particular needs, and only within the geographic and temporal limits of the emergency declarations.” Flu.gov, “October 24, 2009-President Obama Signs Emergency Declaration for Flu,” available at <http://www.flu.gov/planning-preparedness/federal/h1n1e-mergency10242009.html>(last visited August 18, 2012). Still other emergency declarations were issued by the Commissioner of the Food and Drug Administration in the form of an Emergency Use Authorization allowing the use of unapproved medications, diagnostic tests, and medical devices during the duration of the declaration. An archived list is available at <http://www.fda.gov/EmergencyPreparedness/Counterterrorism/ucm264224.htm>(last visited August 18, 2012).(with+links+to+all+declarations)+(last+visited+August+18,+2012).+In+addition,+on+October+24,+2009,+President+Obama+declared+the+2009+H1N1+Influenza+a+“national+emergency”+under+The+National+Emergencies+Act+and+Section+1135+of+the+Social+Security+Act+(50+U.S.C.+1601+et+seq+and+42+U.S.C.+1320b-5),+available+at+(last+visited+August+18,+2012).+Declarations+by+both+the+DHH+Secretary+and+the+President+were+required+to+allow+the+Secretary+to+“waive+or+modify+Federal+requirements+as+listed+in+section+1135.+After+the+Secretary+invokes+section+1135,+health+care+facilities+may+petition+for+1135+waivers+in+response+to+particular+needs,+and+only+within+the+geographic+and+temporal+limits+of+the+emergency+declarations.”+Flu.gov,+“October+24,+2009-President+Obama+Signs+Emergency+Declaration+for+Flu,”+available+at+(last+visited+August+18,+2012).+Still+other+emergency+declarations+were+issued+by+the+Commissioner+of+the+Food+and+Drug+Administration+in+the+form+of+an+Emergency+Use+Authorization+allowing+the+use+of+unapproved+medications,+diagnostic+tests,+and+medical+devices+during+the+duration+of+the+declaration.+An+archived+list+is+available+at+(last+visited+August+18,+2012).>Google Scholar
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Providers were permitted to charge patients or their insurance companies a fee for administering the vaccine. CDC, “H1N1 vaccine administration Q & As,” October 20, 2009, available at <http://wwwtest.ecd.gov/H1N1flu/vaccination/statelocal/vaccing_billing_qa.htm>(last visited August 17, 2012).(last+visited+August+17,+2012).>Google Scholar
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Normally, literary license should not make it onto the list of concerns nor serve as source material for a scholarly endeavor. A scene in the 2011 movie “Contagion,” however, illustrates the potential impact of the distortion of the H1N1 narrative. Advised by an all-star list of public health experts, the film seeks realistically to portray what a deadly worldwide pandemic might look like. Early in the movie, there is a scene in which CDC officials are holding a press conference to explain the looming threat. A reporter asks how the official knows the epidemic threat is not “another false alarm” like the H1N1. Interestingly, this question was changed in the DVD version of the film to an inquiry about whether the government was concerned about losing its credibility if subsequent events reveal it is overhyping the threat.Google Scholar