COMBATIR LA INFORMACIÓN ERRÓNEA

Visión

Las curas o tratamientos no comprobados son ahora parte de lo que la Organización Mundial de la Salud denomina como una "infodemia" de desinformación más amplia, que se presenta en muchas formas y puede ser peligrosa porque se propaga fácilmente ya sea por proveedores inescrupulosos de terapias alternativas o por individuos u organizaciones con motivaciones políticas que buscan desestabilizar la respuesta de la salud pública. Desafortunadamente, dado el alto nivel de ansiedad pública, las buenas intenciones de ayudar a los demás también pueden impulsar la rápida difusión de información errónea.

Los pacientes con afecciones crónicas y otros perfiles de alto riesgo son particularmente vulnerables a los proveedores que venden medicamentos, vacunas, kits de prueba u otros productos y servicios no comprobados de poco o ningún valor en la lucha contra el Covid-19. Algunos de estos productos pueden ser perjudiciales para los pacientes o contribuir a un mayor riesgo para la salud al hacer que los pacientes se sientan más seguros y, por lo tanto, reducir su protección.

Si bien es un problema creciente, es igualmente importante que no exista una reacción exagerada a la información mala o engañosa, por ejemplo, a través de una aplicación excesiva. La desinformación no debe utilizarse como excusa para limitar las libertades de expresión, periodismo u otras formas de expresión existentes. Cuando la información se vuelve artificialmente limitada, altamente regulada o escasa, la salud pública se pone en riesgo.

Las organizaciones de pacientes han estado a la vanguardia en la educación de sus comunidades sobre la desinformación en Covid-19, particularmente cuando reclamos específicos no verificados impactan directamente en su comunidad de pacientes. Estos defensores están bien posicionados para educar a sus comunidades de pacientes sobre productos y reclamos no probados, así como las tácticas utilizadas por proveedores fraudulentos. Al mismo tiempo, los defensores de los pacientes pueden ser una voz de la razón cuando las autoridades reaccionan de forma exagerada a la información errónea y su difusión.

Brecha Política

En situaciones de mayor riesgo para la salud y la seguridad, es inaceptable que los pacientes tengan que estar en guardia contra la información errónea y el marketing agresivo de productos no probados. El contexto posterior a la pandemia es un buen momento para que los países creen o fortalezcan sistemas nacionales para monitorear y combatir la información errónea sobre la salud. Se debería invitar a los PAG a participar en estos debates. Especificamente:

Mensajes Clave

Preguntas y Respuestas

Recursos de Investigación

Citas de la Investigación

Videos

Otras Lecturas

Un informe de agosto de 2020 del Diálogo Interamericano publicado en The Dialogue analiza el importante equilibrio entre las medidas de salud pública y la libertad de expresión con Covid-19 en las Américas. Las páginas 14 a 16 del informe discuten este equilibrio en el contexto de la información errada y la desinformación.

El Instituto Poynter administra la Red Internacional de Verificación de Datos (IFCN). La verificación de hechos se ha convertido rápidamente en una herramienta importante para combatir la información errónea de Covid-19, pero ya se usaba ampliamente debido al aumento de la información errónea política y de otro tipo y la facilidad de su difusión a través de las redes sociales. La IFCN administra la alianza #CoronaVirusFacts y #DatosCoronaVirus lanzada en enero de 2020 para unir a más de 100 verificadores de hechos en todo el mundo.

Partnership for Safe Medicines, una coalición sin fines de lucro de grupos de salud, ha publicado consejos sobre estafas y fraudes de Covid-19 en los EE. UU.

LegitScript, una compañía que monitorea el contenido de Internet para informar a las empresas, los gobiernos y el público sobre qué entidades son legítimas, legales y confiables, tiene un informe sobre la actividad ilícita relacionada con Covid-19

Fight the Fakes, una coalición internacional, ha publicado una declaración oficial sobre curas y tratamientos falsos de Covid-19.

Tweets Sugeridos

#Hashtag

Twitter Handles

Social Media Sample Graphics

Sample Sign-on Letter for a Coalition

Dear AAA (insert name of policy/decision maker):

The undersigned are leaders of several of the largest and most influential civil society patient-based advocacy organizations in BBB (insert country). We are writing to encourage you to help make a stand for public health by fighting health misinformation.

Health misinformation in Covid-19 is harmful. First, unproven products can cause harm when ingested. For patients with weakened immune systems, this can be deadly. Second, false promises can lead to unhealthy behaviors when consumers think they are protected, but in fact remain at risk. Third, the promotion of unproven products can lead to irrational hoarding of certain medicines and supplies, which in turn means non Covid-19 patients who rely on these products have less to access. Hoarding of hydroxychloroquine has caused access problems for patients with lupus or rheumatoid arthritis, for example.

Fourth, health misinformation crowds-out good information. The investments our government has made to produce and disseminate quality information are less effective when there are alternative explanations or false cures easily available and that quickly spread. Fifth, bad information slowly erodes public trust in science and medicine. This lack of confidence can then extend to doubts about our health system and health governance leadership. Strengthening our health system to be better for all citizens becomes a more difficult challenge without public trust.

All of this said, we are also concerned with overzealous enforcement by authorities when misinformation is identified as such. While we understand the need to maintain public order, bad information is usually not criminal in nature and should not be penalized as such. Overreach in this regard will only stifle freedom of expression and the free flow of information. Instead, we believe the better strategy is to refute or rebut misinformation with facts and evidence as appropriate.

As patient advocacy leaders, we help meet the needs of non Covid-19 patients suffering from life-threatening diseases and requiring ongoing treatment and care during the pandemic. It is critically important that health misinformation not continue to undercut our efforts with false promises, unproven treatments, and dangerous propositions. Patients are already at a disadvantage. It is equally important to maintain an open environment for freedom of speech

Instead, we encourage you to work with civil society patient advocates to find solutions.
For example, we can together build needed mechanisms to identify harmful information and react quickly to name it as such and correct the record. Our community networks are vast and can spread good information quickly. We stand together to combat misinformation and hope that you too will stand with us.

If you agree, our organizations are at your disposal for further discussion and consideration. Please contact CCC (insert main contact name) via email (insert email) or phone (insert phone).

Sincerely,

(Name)
(Organization)
(Signature)

...Repeat # of signatures as necessary...

Sample Media Placement for a Coalition

As patient advocates, our organizations help meet the needs of patients suffering from life-threatening diseases and requiring ongoing treatment and care during the Covid-19 pandemic. We provide education to communities at risk, we help patients navigate the health system to access needed care, and we continue to support patients with their emotional and mental health needs during these difficult times.

It is critically important that we not allow health misinformation to undercut all of these efforts with false promises, unproven treatments, and dangerous propositions. Patients are already at a disadvantage. Health misinformation in Covid-19 is harmful in the following ways:

1. Products not supported by science and medicine can cause harm when applied or ingested. For patients with weakened immune systems, this can be deadly;
2. False promises can lead to unhealthy behavior when consumers think they are protected but in fact remain at risk;
3. The promotion of unproven products can lead to irrational hoarding of certain medicines and supplies, which in turn means non Covid-19 patients who rely on these products have less to access;
4. Misinformation crowds-out good information. The investments we make -including those by our government- to produce and disseminate quality information become less effective when there are alternative explanations or false cures easily available and that quickly spread; and
5. Bad information slowly erodes public trust in science and medicine. This lack of confidence can then extend to our health system and public health leaders, which perpetuates a vicious cycle of even more bad information reaching patients and consumers.

It is equally important to maintain an open environment for freedom of speech. As much as we are concerned about bad information, it is usually not criminal in nature and should not be penalized as such. Overreach will only stifle freedom of expression and the free flow of information. Instead, we believe the better strategy is to refute or rebut misinformation with relevant facts and evidence.

We call on all stakeholders to work with civil society patient advocates and our organizations to find solutions. Together we can build mechanisms to resist misinformation by identifying harmful statements and reacting quickly to name it as such and to correct the record. As individuals, we all need to be more cautious about bad information that we may spread inadvertently. As a collective society, we need to stand together to make health misinformation unwelcome.

Patients deserve at least this. We hope you too will stand with us.