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6 months, 2 weeks ago

Medical Misinformation

HealthPad
Directory:
Health Policy
Tags:
commentary
hepatitis B
hepatitis C
HIV
medical misinformation
MMR vaccine
opioid crisis
tainted blood scandal
  • The rise of false medical information undermines healthcare delivery, fosters mistrust, and exacerbates health crises
  • Social media algorithms, human psychology, and influential personalities can drive the spread of inaccurate information
  • Transparent communication, strategic dissemination of information, and enhanced media literacy are essential for countering false narratives
  • AI can help detect and combat deceptive content, but robust policies and regulations are crucial for its effectiveness
 
Medical Misinformation

On May 20, 2024, the final report of a five-year public inquiry into the UK’s infected blood scandal, chaired by Sir Brian Langstaff, delivered a damning indictment of doctors, successive governments, civil servants and the NHS for misinforming patients about contaminated blood treatments, resulting in >30,000 infections with diseases like HIV and hepatitis C, and causing ~3,000 deaths, with additional fatalities anticipated.

A few hours after Langstaff issued his report, the UK Prime Minister, Rishi Sunak, addressed a packed House of Commons, expressing deep regret  for the failures, stating he was “truly sorry” and the attitude of denial was difficult to comprehend and an “eternal shame”. This scandal underscores a broader and growing concern about medical misinformation, where institutional failures and deliberate obfuscation contribute to public distrust and widespread harm. It highlights the need for transparency and accountability in healthcare systems worldwide.
 
In this Commentary

This Commentary traces the evolution of medical misinformation from myths about Edward Jenner’s late 19th century smallpox vaccine to recent falsehoods, highlighting the roles of digital platforms and socio-political factors. It emphasises the need for healthcare professionals to be vigilant, promote media literacy, advocate public education, and call for strong policies to counteract medical disinformation. Additionally, it examines the dual role of AI in both spreading and combating false health information. By considering an historical context, current challenges, and future strategies, the Commentary aims to enhance understanding and provide solutions to mitigate the impact of medical misinformation on public health.
 
Dead Wrong

Medical misinformation manifests in two primary forms: misrepresenting effective therapies and promoting dangerous treatments. False claims, such as the debunked link between the MMR vaccine and autism, undermine public trust in vaccines, causing decreased vaccination rates and preventable disease outbreaks. Advocacy for harmful treatments, like the opioid epidemic in the US and the tobacco industry's promotion of smoking despite evidence of severe health risks, directly endangers patients and diverts resources from legitimate care. The rise of medical misinformation, fuelled by social media algorithms, human psychology, and influential personalities, exacerbates these threats by fostering harmful behaviours, distrust in medical professionals, and delays in appropriate care. Combating this requires transparent communication, strategic information dissemination, enhanced media literacy, and robust policies and regulations, with AI playing a role in detecting and countering false information to protect public health.
 
In their 2023 publication, "Dead Wrong: Diagnosing and Treating Healthcare’s Misinformation Illness," Geeta Nayyar et al trace the evolution of the phenomenon. One prominent consequence of medical misinformation is vaccine hesitancy, which has persisted from the era of the smallpox vaccine in the late 19th century to the digital age. The book delves into the socio-political dimensions of misinformation, illustrating how political leaders can contribute to vaccine hesitancy and societal divisions. Despite a consensus among researchers, health professionals, and policymakers on the imperative to combat health fabrications, the full scope of this issue remains elusive. Nayyar offers practical strategies for healthcare professionals to confront and reduce the phenomenon.

A 2023 study published in the Journal of Medical Internet Research found that the most prevalent medical falsehoods involve information about smoking, drugs, vaccines, and diseases, with Twitter (now known as ‘X’) identified as a primary platform for their dissemination. Social media amplifies the spread of health misinformation, eroding public trust and impeding medical advancements.
Digital Amplification

Addressing medical falsehoods is important in an era where information spreads rapidly through digital channels. The rise of social media and increased internet accessibility allow misinformation to reach vast audiences within seconds. This challenge is compounded by advancements in AI, which, while contributing to healthcare improvements, also create new avenues for generating and disseminating false information.
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AI technologies, particularly deep learning and natural language processing, can produce convincing fake content, including medical advice and research findings, exploiting public anxieties and knowledge gaps. To combat this, it is essential to enhance digital literacy, improve the accuracy of AI systems, and foster collaboration among technology companies, healthcare professionals, and policymakers. By understanding and addressing the sources and impacts of medical falsehoods, the protection of public health can be enhanced.
 
Historical Context

Medical misinformation has a long history, dating back to the late 18th century when Edward Jenner, an English physician and scientist known as the father of immunology, pioneered the concept of vaccines and created the world's first smallpox vaccine. Despite its success, Jenner faced significant opposition, fuelled by fear and misunderstanding. Critics spread false claims that vaccination could cause various ailments or even transform individuals into cow-like creatures due to the cowpox origin of the vaccine. This early example highlights the challenges of medical misinformation: fear, misunderstanding, and resistance to new scientific advancements.
 
Throughout the 19th and 20th centuries, the printing press enabled the widespread dissemination of both accurate and inaccurate information. Pamphlets and newspapers often spread falsehoods about anaesthesia and germ theory. The rise of mass media, including radio and television, further amplified inaccurate health information. A notable example is the mid-20th century polio vaccine scare, known as the Cutter Incident, which occurred in April 1955. This involved a batch of polio vaccines produced by Cutter Laboratories that contained live poliovirus, leading to cases of polio among vaccinated children. The Cutter Incident eroded public confidence in the polio vaccine and prompted changes in vaccine production and safety protocols. Additionally, misinformation surrounding the HIV/AIDS epidemic in the late 20th century created fear, stigma, and ignorance as the HIV epidemic raged throughout the world in the 1980s, killing thousands of people.
 
The advent of the internet and social media in the late 20th and early 21st centuries increased the speed and reach of misinformation. Anti-vaccine activism gained traction with the publication of Andrew Wakefield’s now-debunked study in 1998, which falsely linked the MMR (measles, mumps and rubella) vaccine to autism. This led to declines in vaccination rates and subsequent outbreaks of preventable diseases. The COVID-19 pandemic, declared by the World Health Organisation (WHO) in March 2020, further highlighted the impact of medical misinformation, as falsehoods complicated public health efforts and contributed to vaccine hesitancy.
 
Sources and Mechanisms of Medical Misinformation

As we have suggested, medical misinformation spreads through social media platforms, traditional news outlets, and the misinterpretation of scientific studies. Social media platforms like Facebook, X (formerly Twitter), TikTok, and Instagram serve as potent conduits due to their extensive reach and rapid information dissemination capabilities. Often, these platforms lack stringent content inspection mechanisms, enabling unverified information to proliferate through algorithms designed to maximise engagement, which inadvertently prioritises misleading content. Traditional media also contributes to the problem by sensationalising news to attract attention, without adequate fact-checking.
 
Misinformation often goes viral more easily than factual information. A 2018 study in the journal Science found that false information is 70% more likely to be retweeted than the truth. Influencers with large followings further exacerbate the issue by sharing inaccurate information, which quickly gains credibility through their endorsements. Addressing medical misinformation requires a multifaceted approach, including enhanced verification processes, increased public education, and greater accountability for those spreading false information. Additionally, adjusting algorithms, improving media literacy, and promoting credible medical sources are essential steps in combating this pervasive issue.
  
Consequences

Vaccine hesitancy, driven by falsehoods spread online and through social networks, leads people to doubt vaccine safety and efficacy. This hinders vaccination efforts and increases outbreaks of preventable diseases. Inaccurate medical information erodes trust in healthcare professionals and institutions, undermining expert guidance and fuelling public uncertainty and fear. This hampers healthcare delivery and weakens community resilience in crises. Individuals misled by medical falsehoods may make harmful health decisions, such as avoiding recommended treatments or trying dangerous alternative therapies. These effects threaten both personal health and community wellbeing.
 
Case Studies

We have mentioned these examples before, but due to their significance, we are now giving them more prominence.

Smallpox Vaccine Opposition
When Edward Jenner introduced the smallpox vaccine in 1796, scepticism and resistance emerged. Misconceptions about its safety and efficacy, coupled with religious and philosophical beliefs, led some to argue that vaccination interfered with divine will. This resistance delayed smallpox eradication, causing continued outbreaks and fatalities. Persistent public health campaigns and legislative actions eventually overcame this opposition.
 
MMR Vaccine Scandal
In 1998, Andrew Wakefield published a fraudulent research paper falsely linking the MMR vaccine to autism. Despite lacking credible scientific evidence, the publication caused a significant decline in vaccination rates due to media coverage and public fear, leading to outbreaks of measles and other preventable diseases. Subsequent investigations revealed Wakefield's ethical violations and data manipulation, resulting in the retraction of the paper and the revocation of his medical license.

UK Contaminated Blood Scandal
Bleeding disorders are conditions that impair the blood's ability to clot properly. In the UK, ~24,000 people live with such disorders, which are typically inherited, although ~33% of cases result from random gene mutations. The most well-known bleeding disorder is haemophilia A, predominantly affecting males. Those living with the disorders often require transfusions of blood platelets or clotting factors.

Between 1950 and 1970, UK authorities sourced blood donations from prisons. However, the introduction of screening for hepatitis B in the early 1970s revealed a significantly higher incidence of the disorder among inmates. Despite aiming for self-sufficiency in NHS blood stock by July 1977, the UK government failed to achieve this goal and relied on imported blood and blood from prison donors for decades. While countries like Germany and Italy began testing donated blood in the mid-1960s and early 1970s, and the American Red Cross stopped collecting blood from US prisons in 1971 due to high hepatitis rates, the UK continued to import Factor VIII - a blood clotting product - from high-risk US donors, including prison inmates and intravenous drug users, during the 1970s and 1980s. The contaminated blood products led to ~30,000 people in the UK being infected, causing ~3,000 premature deaths. Many survivors contracted HIV and hepatitis C and faced additional challenges such as stigma, job loss, and financial hardship. In 2018, Sir Brian Langstaff was appointed to chair a public inquiry into the UK's contaminated blood scandal. His final report, released on May 20, 2024, highlighted that many infections were preventable and concluded that the tragedy was exacerbated by decades-long cover-ups by doctors, the NHS, governments, and civil servants, driven by "financial and reputational considerations." Langstaff called for immediate compensation, public memorials, and systemic reforms.

The US opioid epidemic
The on-going opioid epidemic in the US further illustrates the impact of medical misinformation. Every day, ~300 Americans die from drug overdoses. According to the Centers for Disease Control and Prevention, there were >100,000 reported overdose deaths in 2021, with opioids involved in ~75% of these cases. Pharmaceutical companies played a significant role in this crisis by misleading healthcare providers and patients, downplaying the addictive risks of opioids, and falsely claiming they were safe for chronic pain management. This misinformation led to widespread over-prescription, resulting in addiction and overdose deaths. Consequently, the opioid epidemic has fuelled a persistent public health crisis that continues to challenge the nation.
 
Combating Medical Misinformation

Effectively combating medical misinformation is challenging, especially when governments and healthcare systems are involved. Addressing this phenomenon requires a multifaceted approach, including proactive public health communication, the involvement of trusted community leaders, and robust social media monitoring. Healthcare professionals and institutions must provide accurate, evidence-based information and act as trusted voices in their communities. Their proactive engagement in patient education and public outreach helps dispel myths and correct falsehoods.
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Equipping individuals with critical thinking skills to evaluate information sources is essential. Effective strategies to combat misinformation involve utilising a variety of platforms, from traditional media to social networks, ensuring messages reach a broad audience. Clear, consistent, and transparent communication is crucial for building trust and encouraging the public to follow health guidelines.
Policy and regulatory approaches also play an important role. Governments and healthcare organisations must implement regulations to curb the spread of false information, such as holding social media platforms accountable for monitoring and addressing misinformation. Policies should support the training of healthcare professionals in communication skills and media engagement, ensuring they are prepared to counteract misinformation effectively. Integrating these approaches can create a more informed public, enhance trust in healthcare systems, and ultimately improve health outcomes.
 
The Future

The future of medical misinformation will be shaped by emerging trends and technologies, presenting both challenges and opportunities. AI and machine learning (ML) can play roles in detecting and countering falsehoods. Advanced algorithms can analyse vast amounts of data to identify misinformation trends, flagging content that requires further scrutiny. AI-driven chatbots and virtual assistants can provide people with reliable health information, directly counteracting misinformation at its source.
 
Despite these advancements, the use of AI and ML also poses significant risks. These technologies can be exploited to create deepfakes, and if not properly managed, they can inadvertently amplify misinformation, as evidenced by algorithmic biases on social media platforms. To mitigate these risks, ensuring ethical AI deployment and incorporating robust human oversight is crucial. Fostering collaboration between tech companies, healthcare professionals, and policymakers can also establish robust frameworks for managing misinformation. By embracing these technologies while remaining vigilant about their limitations, we can help shape a future where accurate medical information prevails.
 
Takeaways

Geeta Nayyar deserves commendation for her book, which has raised awareness about medical misinformation. Historical and contemporary case studies highlight the evolving threat misinformation poses to public health. Accurate, transparent communication and robust public health strategies are needed. Despite the complexities of combating misinformation, especially when health professionals and governments are involved, healthcare institutions must proactively disseminate reliable information and be accountable for their actions. Media literacy and public education are essential for empowering individuals to navigate the complex information ecosystem. There is a need to leverage advanced technologies, such as AI and ML, which offer promising avenues for detecting and countering misinformation, provided they are implemented with ethical oversight. A multifaceted approach, including policy and regulatory measures, is crucial for safeguarding public health, enhancing trust in healthcare systems, and improving health outcomes.
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6 years, 11 months ago

A cure for hemophilia?

HealthPad
Directory:
Haematology
Tags:
blood clotting disorder
commentary
cryoprecipitate plasma
excessive bleeding
fresh frozen plasma (FFP
gene editing
hemophilia
hemophilia A
hemophilia B
tainted blood scandal
  • A new gene editing study is poised on the cusp of medical history because it holds out the prospect of providing a cure for hemophilia
  • Hemophilia is a rare incurable life-threatening blood disorder
  • People with hemophilia have little or no protein needed for normal blood clotting
  • Severe forms of the disorder may result in spontaneous and excessive bleeding
  • In recent history many people with hemophilia died before they reached adulthood because of the dearth of effective treatments
  • A breakthrough therapy in the 1980s was contaminated with deadly viruses
 
A cure for hemophilia?

A study led by researchers from Barts Health NHS Trust and Queen Mary University London and published in a 2017 edition of the New England Journal of Medicine has made a significant step forward towards finding a cure for hemophilia A, a rare incurable life threatening-blood disorder, which is caused by the failure to produce certain proteins required for blood clotting. In recent history only a few people with hemophilia survived into adulthood. This was because of the dearth of effective treatments and any small cut or internal hemorrhaging after even a minor bruise was often fatal.
 
The royal disease

There are 2 main types of hemophilia: A and B.  Both are rare congenital bleeding disorders sometimes referred to as “the royal disease,” because in the 19th and 20th centuries hemophilia affected European royal families. Queen Victoria of England is believed to have been a carrier of hemophilia B, a rarer condition than hemophilia A. 2 of Victoria’s 5 daughters (Alice and Beatrice) were also carriers.  Through marriage they passed on the mutation to various royal houses across Europe including those of Germany, Russia and Spain. Victoria’s son Prince Leopold was diagnosed with hemophilia A when he was a child. He died at 31 and throughout his life had a constant staff of doctors around him.
 
Epidemiology

The worldwide incidence of hemophilia A is about 1 in 5,000 males, with approximately 33% of affected individuals not having a family history of the disorder, which in their cases result from a new mutation or an acquired immunologic process. Only 25% of people with hemophilia receive adequate treatment; most of these are in developed nations. In 2016 there were some 7,700 people diagnosed with the condition in the UK, 2,000 of whom had a severe form with virtually no blood clotting protein. In the US there are some 20,000 people living with the disorder. Morbidity and death from hemophilia are primarily the result of haemorrhage, although HIV and hepatitis infections became prominent in patients who received therapies with contaminated blood products prior to the mid-1980s: see below.
 
Etiology
Hemophilia A and B are similar disorders. Both are caused by an inherited or acquired genetic mutation, which reduces or eliminates the coagulation genes referred to as factor VIII for hemophilia A, and factor IX for hemophilia B. Factors VIII and IX are essential blood clotting proteins, which work with platelets to stop or control bleeding. The amount of the protein present in your blood and its activity determines the severity of symptoms, which range from mild to severe. Factors VIII and IX deficiencies are the best-known and most common types of hemophilia, but other clotting factor deficiencies also exist. Factors VIII and IX are encoded in genes and located on the X chromosomes, which come in pairs. Females have 2 X chromosomes, while males have 1 X and 1 Y chromosome. Only the X chromosome carries the genes related to clotting factors. A male who has a hemophilia gene on his X chromosome will have hemophilia. Since females have 2 X chromosomes, a mutation must be present in both copies of the gene to cause the hemophilia. When a female has a hemophilia gene on only 1 of her X chromosomes, she is a "carrier” of the disorder and can pass the gene to her children. Sometimes carriers have low levels of a clotting factor and therefore have symptoms of hemophilia, including bleeding.

 

Hemophilia A and B

Hemophilia A and B affect all races and ethnic groups equally. Hemophilia B is the second most common type of hemophilia and is less common than factor VIII deficiency. Notwithstanding, the result is the same for people with hemophilia A and B: they both bleed more easily and for a longer time than usual. The differences between hemophilia A and B are in the factor that is either missing or at a low level. The treatments to replace factors A and B are different. Hemophilia A needs to be treated with factor VIII, and hemophilia B with factor IX. Giving factor VIII to someone with hemophilia B will not help to stop the bleeding.
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Mild to severe hemophilia

People with mild hemophilia have few symptoms on a day-to-day basis, but may bleed excessively for example during surgery, whilst those with a severe form of the disorder may have spontaneous bleeds. Severe hemophilia tends to be diagnosed in childhood or as part of screening in families known to have bleeding disorders. People who do not have hemophilia have a factor VIII activity of 100%, whereas people who have severe hemophilia A have a factor VIII activity of less than 1%. In severe forms, even the slightest injury can result in excessive bleeding as well as spontaneous internal bleeding, which can be life threatening. Also, the pressure of massive bleeding into joints and muscles make hemophilia one of the most painful diseases known to medicine. Without adequate treatment, many people with hemophilia die before they reach adulthood. However, with effective replacement therapy, life expectancy is about 10 years less than that of males without hemophilia, and children can look forward to a normal life expectancy. Replacement therapy entails concentrates of clotting factor VIII (for haemophilia A) or clotting factor IX (for haemophilia B) being slowly dripped or injected into a vein to help replace the clotting factors that are missing or low.
 
Brief history of treatments

In the 1950s and 60s fresh frozen plasma (FFP) was the principal therapy for hemophilia A and B. However, because each bag of FFP contained only very small amounts of the clotting agents, large amounts of plasma had to be transfused to stop bleeding episodes and people with the conditions had to be hospitalized. In some countries FFP is still the only product available for treating hemophilia.
 
In the mid-1960s Judith Pool, an American scientist, made a significant advance in haemophilia therapy when she discovered that the sludge, which sank to the bottom of thawing plasma was rich in factor VIII (but not IX) and could be frozen and stored as “cryoprecipitate plasma”. This more concentrated clotting factor VIII became the preferred treatment for severe hemophilia A as it required smaller volumes and patients could receive treatment as outpatients. Notwithstanding cryoprecipitate is less safe from viral contamination than concentrates and is harder to store and administer.
 
The tainted blood scandal

In the early 1970s drug companies found they could take the clotting factors VIII and IX out of blood plasma and freeze-dry them into a powder. This quickly became the treatment of choice as it could be used to treat hemophilia at home. There was a huge demand for the new freeze-dried product, and drug companies distilled the plasma of large groups of donors, sometimes as many as 25,000, to meet the demand. This led companies seeking substantial supplies of blood to pay prisoners and others to give blood. Some donors were addicted to drugs and infected with the HIV virus and hepatitis C. By the early 1980s, human blood, plasma and plasma-derived products used in therapies for hemophilia were discovered to be transmitting potentially deadly blood-borne viruses, including hepatitis viruses and HIV. So the same advanced substance being used to treat people with hemophilia was also responsible for causing sufferers prolonged illnesses and premature death.
 
Infected hemophilia treatments in the UK

A report published in 2015 by a UK All Party Parliamentary Group on Haemophilia found that 7,500 people in Britain with the disorder were infected with the contaminated blood products. According to Tainted Blood, a group set up in 2006 to campaign on behalf of people with hemophilia, 4,800 people were infected with hepatitis C, a virus that causes liver damage and can be fatal. Of these, 1,200 were also infected with HIV, which can cause AIDS, and some 2,400 sufferers died prematurely.
 
A 2017 UK official enquiry
 
In 1991 the UK government made ex-gratia payments to hemophilia patients infected with HIV, averaging £60,000 each, on condition that they dropped further legal claims. The extent of infection with hepatitis C was not discovered until years later. Campaigners unearthed evidence suggesting that UK officials in the Department of Health knew or suspected that the imported factor concentrates were risky as early as 1983. Notwithstanding, NHS England is said to have continued to administer the contaminated concentrates to patients with hemophilia. In 2017 the UK government set up an inquiry into the NHS contaminated blood scandal.  
 
A new scientific era

In the early 1980s, soon after HIV was identified, another significant breakthrough occurred in the treatment of hemophilia when manufacturers used genetically engineered cells that carry a human factor gene (called recombinant products). Today, all commercially prepared factor concentrates are treated to remove or inactivate blood-borne viruses. Also, scientists have a better understanding of the etiology of the disease and are able to detect and measure its inhibitors and know how to eliminate them by manipulating the immune system.
 
A cure for haemophilia A

Researchers, led by John Pasi, Director of the Haemophilia Centre at Barts Health NHS Trust and Professor of Haemostasis and Thrombosis at Queen Mary University London, have successfully carried out the first gene editing study for hemophilia A. The study enrolled 13 patients across England and injected them with a copy of their missing gene, which allows their cells to produce the essential blood-clotting agent factor VIII. Researchers followed participants for up to 19 months, and findings showed that 85% had normal or near normal levels of the previously missing factor VIII clotting agent and all participants were able to stop their previously regular haemophilia A treatment: they were effectively cured.
 
Gene editing
Gene editing is particularly relevant for diseases such as hemophilia A where, until the recent UK study reported in this Commentary, there was no cure. Gene editing allows doctors to prevent and treat a disorder by inserting a healthy gene into a patient’s cells to replace a mutated or missing gene that causes the disease. The technique has risks and is still under consideration to ensure that it is safe and effective. In 2015, a group of Chinese scientists edited the genomes of human embryos in an attempt to modify the gene responsible for β-thalassemia, another potentially fatal blood disorder.
 
Expanding the study

According to Pasi, "We have seen mind-blowing results, which have far exceeded our expectations. When we started out we thought it would be a huge achievement to show a 5% improvement, so to actually be seeing normal or near normal factor levels with dramatic reduction in bleeding is quite simply amazing. We really now have the potential to transform care for people with haemophilia using a single treatment for people who at the moment must inject themselves as often as every other day." Pasi and his colleagues are expected to undertake further studies with participants from the USA, Europe, Africa and South America.
 
Takeaway

Hemophilia is a life-changing, often painful and debilitating disorder. In recent history there was a dearth of effective therapies and people with the disorder barely survived into adulthood.  More recent scientific advances that used concentrated blood products to improve treatment were contaminated with deadly viruses, which further destroyed the lives of sufferers, and in many cases led to their premature death. The study, undertaken by Pasi and his colleagues, is on the cusp of medical history because it has the potential to provide a cure for what has been an incurable life-changing disease. Notwithstanding, it is worth bearing in mind that scientific discovery is rarely quick and rarely proceeds in a straight line.
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