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Medical Gaslighting - Hampering the time to diagnosis

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Addressing the Challenge of Medical Gaslighting

In healthcare domain, achieving a timely diagnosis is not just advantageous; it's a critical factor in determining patient outcomes.

However, for parents of children grappling with undiagnosed rare diseases and complex conditions, this journey is especially problematic during the process of seeking a diagnosis. Aside from experienced specialists, many doctors lack awareness about most rare diseases. In the modern world, everyday people have come to rely on the expertise of specialists, and when these ‘experts’ won’t accept what a patient is saying at face value, the results can be devastating.

Among these obstacles, medical gaslighting emerges as a significant challenge, hampering the diagnostic process.

This article sheds light on the imperative of shortening the time to diagnosis and addresses the pervasive issue of medical gaslighting within our healthcare system.

The Vital Need to Shorten time to Diagnosis:

Accelerating the diagnostic process isn't just about convenience; it stands as a critical factor determining life or death for many individuals. Timely diagnosis facilitates prompt treatment initiation, curbing disease progression, and reducing morbidity and mortality rates. Additionally, it eases the emotional burden and uncertainty faced by patients and their families during the diagnostic journey.

Medical gaslighting: when a medical professional dismisses a person's health concerns as being the product of their imagination or blames their symptoms on psychological factors, such as stress or anxiety

The Challenge of Medical Gaslighting:

Medical gaslighting, wherein healthcare providers dismiss or trivialize a patient's symptoms, poses a significant obstacle to timely diagnosis. This form of psychological manipulation erodes patient trust, confidence in seeking care, and prolongs the diagnostic timeline.

Instances of medical gaslighting abound, this can be by refusing to perform lab tests or insisting that symptoms are related to mental health disorders. Assuming symptoms or a diagnosis are based on race, sex, gender identity, ethnicity, age, weight, or income level is another form of medical gaslighting.

Strategies to Combat Medical Gaslighting:

To combat medical gaslighting and expedite diagnosis, healthcare providers must adopt a patient-centered approach. This entails actively listening to patients, validating their experiences, and taking their concerns seriously. Additionally, vigilance for signs of rare diseases or atypical presentations, particularly in patients with complex medical histories, is crucial.

Patients and their families also play a pivotal role in navigating the diagnostic process. By educating themselves, seeking second opinions, and advocating for thorough evaluation, patients can empower themselves and hold healthcare providers accountable. Support networks and online communities provide invaluable resources and solidarity for those facing similar challenges.

Moreover, fostering a culture of trust, empathy, and transparency within healthcare settings is crucial. Open communication, mutual respect, and shared decision-making ensure patients feel heard, valued, and supported throughout their healthcare journey.

So what can we do about gaslighting?

It's clear that there is a real need to optimise the consultation experience for patients. On the one hand, doctors have at their fingertips valuable resources such as FindZebra, OMIM.org, and Orphanet, but if there is no suspicion of a possible rare condition it is unlikely these will be accessed. To further compound the issue, many doctors, particulary in the primary care space are unaware of these resources.

A significant obstacle to suspecting rare diseases, lies in doctors limited awareness of the patient's overall condition. Patients may present with recurring physical problems, yet these symptoms may be perceived as isolated issues rather than being an indication of a possible underlying rare disease. Patients themselves may not recognise the association of symptoms, attributing them to other less concerning factors.

Failure to recognise the interrelated nature of symptoms can result in diagnostic delays, as doctors may not consider rare diseases without a holistic understanding of the patient's condition.

It is therefore vitally important to empower patients and their families with tools and resources to support the presentation of their symptoms, in the hope that by presenting a complete picture of these it will raise a red flag and further investigation.

A solution to this challenge are online symptom checkers, which if optimised for patients symptom related search terms can serve as valuable aids in terms of compiling comprehensive symptom reports for discussion with healthcare professionals.

These tools allow patients to document and organise their symptoms systematically, ensuring no pertinent information is overlooked during consultations. By presenting a detailed symptom report, patients can facilitate more efficient and focused discussions with their providers, ultimately expediting the diagnostic process and enhancing the quality of care received.

There are a number of online symptom checkers currently available, however there is an unmet need for tools such as this which have been developed to target particular rare conditions. It is also important to note that any online resource needs to be optimised for the specific type of symptom related phrases patients and their families will utilise when searching online for answers.

By working with diagnosed patients and listening to their journey to diagnosis, we can begin to understand their information search journey in order to develop tools that are easy to find only and provide real value with regards to supporting their consultation.

Contact Switch Health, the rare disease patient engagement experts, to explore how we support biopaharma leaders with strategic initiatives to accelerate time to diagnosis.

Rob Wyer is an expert in rare disease patient engagement with a special interest in the online behaviour of patients and their families.

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