Information ecosystem disrupting health, Ex #7: Online health information fraud, scams and deceptive marketing

The first ever WHO resolution that had to do with the internet in health was passed in 1998 and called on the "international community to adopt self-regulatory guidelines for good [health] informational practices".

It came out of the concern over increased deceptive marketing on the internet to promote falsified and substandard medicines (see EB101.R3, 1998).

This was ten years after the advent of the World Wide Web, the networked internet and health information and access were changing the nature of health information and evidence - before we ever mentioned digital health and personalized health care. Seven years later did WHO Member States pass a first WHA resolution on eHealth.

As a health informatician, I have always argued that we have the responsibility to ensure that digital transformation must manage the impact of how changes the digitized information ecosystem impact the generation, use, and perceptions of health information and evidence for the purpose of public health.

Looking at the eHealth and digital health resolutions that have passed the World Health Assembly since, it is noticeable that the global digital health community has put the concern with the information and evidence in health aside in favor of emphasizing the digitization of health services, personalized health care and technological standardization and harmonization of health information exchange.

In the mean time, the internet and information ecosystem have rapidly evolved, and each of their evolutions has challenged health information and evidence.

In 1998, the concerns were already so grave that the worst of the challenges manifested in fraudulent misuse of the Internet and health information. If this was the worst thing to address in a resolution, imagine what else was going on in relation to health information.

Too little has been done systematically in the 30 years since to understand how health professionals, the public and different communities have experienced changes in the meaning, trust and relationship with health information and evidence in a digitized information environment.

Had we recognized the systemic challenge of information environment on health when the hype of digital transformation hit the health sector, health would not be decades behind with understanding the issues or identifying the solutions that are supportive of prevention and care in diverse populations and communities.

Health fraud, internet scams, and deceptive marketing undermine health information and evidence

The pervasive exploitation of the information environment by health fraud, scams, and deceptive marketing has become a significant issue. This phenomenon affects public health, misleads consumers, and undermines the credibility of scientific evidence.

Some examples that challenge the evidence-based practices in public health decision-making, science translation and trust in health products, services, health guidance and health information:

• Fraud in scientific publishing: The integrity of scientific literature is undermined by the proliferation of fraudulent scientific papers, largely driven by so-called "paper mills." and "hijacked scientific journals". These entities produce fabricated studies that pollute scientific databases and misguide research and policy decisions. The situation has reached a critical point where thousands of these papers are retracted annually, but the sheer volume suggests many more go undetected, affecting critical areas like medical research and drug development. In addition, low-quality scientific articles, even if retracted, are more often cited by purveyors of health misinformation and disinformation in attempts to erode trust in health products, services, or health authorities, or misrepresented in narratives and conversations.
• Identity theft of healthcare professionals: Health professionals globally are increasingly becoming targets of identity theft, where their credentials and images are used without consent to promote unverified treatments and products. This kind of deception not only damages the reputations of these professionals but also poses serious risks to public health. Individuals impersonating doctors have sold bogus treatments, leveraging the trust and authority associated with the profession to mislead patients. For example, see this article on identity theft of health workers on TikTok.
• Deceptive marketing has reached another level, targeting communities that embrace health misinformation: The article from WIRED reports on a scam operation where fraudsters on Telegram impersonate doctors to sell fake COVID-19 vaccination certificates and other medical documents, exploiting conspiracy theories and targeting anti-vaxxers. The scammers use real doctors' names and photos to lend credibility to their claims, significantly affecting trust in medical systems and potentially exposing people to misinformation about vaccinations and other health-related issues.

We could find even more examples on our changing relationship with health information and evidence.

If we don't tackle the immediate harm, but also the accumulative harm of such experiences by communities and patients, we will continue hitting a plateau in trust in health information and evidence and more often hear, "Why should I believe your evidence?" when working in communities and with patients.

A lot of the most egregious fraud can only be addressed with requirements for greater transparency, with regulation and professional accountability to address fraud, and even considering more robust digital identity protections for health professionals to prevent impersonation online.

Health professionals are facing all kinds of new challenges that originate in the information environment. We need to do better supporting them in effective responses in such situations and also design our systems to counter the fraud, scams and deceptive marketing online.