People increasingly turn to online sources to search for health-related information, investigate options they have, and only then decide whether it is worth investing time and money to get the qualified opinion of a healthcare professional. Pew Research Center asked U.S. adults about their behavior online when it comes to health-related questions. The results were astonishing: 35% of U.S. adults went online to figure out a medical condition they or people around them might have. Of these online diagnosers, 46% went ahead to seek medical help and 38% decided to take care of their problem without medical assistance. This online self-diagnosis seemed to be remarkably accurate since 41% of respondents stated that their diagnosis was later medically confirmed. 55% of respondents searched for a specific disease or a medical problem, 43% sought information about a certain medical treatment or procedure and 16% searched for drug safety information or recalls .
In 2019, the public policy priorities identified by Pew Research Center included healthcare costs among the top three hottest topics. Eighty-three percent (83%) of the respondents stated that the cost of treatment makes quality care unaffordable, 68% believe that people rely too much on prescription medicines that may not be necessary and 59% think that prescription medicines side effects create as many problems as they solve. Nearly a half of U.S. adults surveyed by Pew Research Center (49%) believe that evaluation of safety and effectiveness of new medical treatments is too slow and 44% stated that new treatments are made available before we fully understand their effects., Forty-two percent (42%)worry that new treatments are so complex that patients cannot make informed decisions about their care .
There is no doubt that the public increasingly turns to social media for advice and feedback on a wide variety of topics. The amount of content generated on social media is staggering. As of 31 March 2019, Facebook had 1.56 billion daily active users and 2.38 billion monthly active users worldwide . About 1.3 billion accounts have been created on Twitter. Three hundred and twenty-six million accounts belong to people who log in at least once a month. Sixty-seven million monthly active users are U.S. citizens. However, not all users actively generate content: only about 550 million users have sent at least 1 Tweet and about 80% of the content is tweeted by a mere 10% of users .
Nonetheless, social media is an important source of information that has value in the detection of concerns as they are perceived by the public. Social media can help detect a variety of concerns, such as sources of uncontrolled distribution and e-commerce channels, patterns of use, creative uses by consumers (misuse), detection of safety and efficacy problems, interactions, toxicity through overdose, or diversion and abuse. Spontaneous conversations about products, brands and treatments occur online every day. The current focus of the industry however is on reputation management, tracking critics, and early detection of whistleblowers rather than active monitoring of safety signals. Detection of adverse drug events on social media platforms seem to be just a byproduct of other activities online, namely branding and marketing.
One of the reasons why the use of social media for safety signal detection may be somewhat underutilized by the industry is the fact that in most countries the responsibility for doing so is limited to the obligation of Market Authorization Holders to monitor their own websites and platforms. ICH E2D (2003) states that Market Authorization Holders should screen websites under their management and responsibility for potential adverse drug reaction (ADR) reports. Market Authorization Holders are not expected to screen external websites for ADRs. However, if they become aware of such ADR, they must handle it as any other spontaneous report, if the case meets the minimum criteria for reporting. In 2014 and 2015, Sanofi and Novartis, private consortium members of Web-RADR mapped legal obligations regarding social media monitoring for pharmacovigilance purposes. All 182 contacted countries responded to the survey and 37 provided local regulatory documents on the use of social media for pharmacovigilance purposes. 31 countries (members of the European Union or European Economic Area, Australia, Saudi Arabia, Egypt and South Africa) adopted provisions there are identical or substantially similar to those in the current Good Pharmacovigilance Practices (GVP) Module IV and IX. United States, Italy, France, Sweden, United Kingdom and Turkey have provisions that are more detailed than the current GVP guideline . In the U.S., the current guidance emphasizes monitoring of platforms used for direct to consumer advertising rather than monitoring social media for the purpose of reporting adverse drug effects.
Consortium EU Innovative Medicines Initiative (IMI) WEB-RADR (Web recognizing Adverse Drug Reactions) has been researching the topic of social media listening and publishing extensively on the topic. Some of the concerns relating to processing data from social media include the inability to clearly identify the source, data richness, the potential of high-volume, low-quality data to overwhelm traditional data collection and processing systems, and signal dilution. IMI concluded that data available on social media such as Facebook and Twitter are not worth investing in expensive monitoring systems at the expense of other activities and only suggest monitoring of specific networks such as PatientsLikeMe, DailyStrength or MedHelp . Despite the tremendous amount of information available online, this resource remains underappreciated and underutilized by the industry.
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 Pew Research Center (2019). Public’s policy priorities for 2019. [online] Pew Research Center. Available at: https://www.pewresearch.org/fact-tank/2019/02/04/state-of-the-union-2019-how-americans-see-major-national-issues/pp_2019-01-24_political-priorities_0-02/ [Accessed 1 May 2019].
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