The hidden drivers behind a growing trend 

The rise of telemedicine and other advancements in health technology during the pandemic has accelerated the rise of self-diagnosis. The internet has become the first point of contact for people seeking more information about their physical and mental health. A recent study from Harvard discovered that more than a third of adults in the US regularly use the internet to self-diagnose¹. This number is undeniably low as it doesn’t include the recent tide of young people using social media platforms, like TikTok, to identify and diagnose mental health disorders. The trend of online diagnosis, whether through social media platforms or search engines like Google, is growing and here to stay.

Pre-pandemic self-diagnosis was mainly confined to physical symptoms, and most of us have ‘googled that rash’ at some point. Self-diagnosis has now moved into the mental health space as well. The aftermath of COVID-19 is still reverberating and has spurred a dramatic rise in the self-diagnosis of severe mental health conditions, especially in youth. For example, the hashtag #ADHD² has received 2.4B views on Tik-Tok. The worrying part is that most social media advocates or self-proclaimed experts have no training or experience in diagnosing these severe mental health disorders and have a significant influence on their followership.

As more and more information is added online, it becomes increasingly difficult to vet the quality of what people are reading. Aside from the low accuracy³ of online diagnostic tools and info sites, more significant systemic issues are at play.

The Government of Ontario has recently launched a campaign to tackle this issue, influencing citizens to visit ontario.ca/YourHealth as a healthcare hub–while this is a great first step, this effort only solves part of the problem, and doesn’t address the community that people are looking for when they’re turning to online social platforms.

How accurate is self-diagnosis?

A recent study entitled Comparison of Physician and Computer Diagnostic Accuracy³ revealed that doctors got it right 72% of the time, compared with 34% for the computer program. Furthermore, doctors called the correct answer in the top three about 83% of the time, compared with 51% for computers. This is a disturbing result because 72% of internet users seek medical advice online.⁴

Strong stats, like the ones cited above, can be a bit contentious. For example, some of the most popular online self-diagnosis tools claim between 60%-77% diagnostic accuracy, with some boasting over 12.5M users worldwide.

The point is that for the typical person, these resources alleviate much of the friction associated with navigating the healthcare system. Issues like long wait times for appointments, high bureaucratic load, and needing to take time off from work add barriers to care.

Why are patients leaning on the internet more than their doctors?

The issue of a lack of trust is not new in healthcare⁵. The main drivers underlying the rise of self-diagnosis are confidence in the healthcare system, barriers to access, and convenience.

In the 2022 Edelman Trust barometer⁶ on global healthcare, respondents were asked to agree or disagree with the following statement: “The COVID-19 pandemic has decreased my confidence that our healthcare system is well equipped to handle major health crises.” 53% of Canadian respondents agreed with this statement. The numbers were not much better in the US, which landed at 48%.

Trust is also a function of time. Our providers are busier than ever and often run assembly-line practices where the goal is to see as many patients as possible. This provides no opportunity to build rapport or connect with their patients. What’s more, is that they are seeking connection and community. We can see this in the rise of social media communities around specific health issues and disease states.

Is there a silver lining to self-diagnosis?

As artificial intelligence gains ground, we can’t ignore its potential to augment the diagnostic process. The problem lies in the lack of quality health information online and people’s inability to interpret that information accurately. Combine that with the fact that only a small percentage of the US population is considered health literate, and you have a recipe for misinformation that can negatively impact people. This is why we are seeing such low accuracy rates when it comes to self-diagnosis.

But is there an upside to digital self-diagnosis? Some doctors are reporting improved outcomes from patients who have taken the time to research possible answers to their health issues. A patient taking the time to do their homework before a doctor’s visit could increase their chances of an accurate and speedy diagnosis.

The act of seeking health information online can signal a sense of ownership of one’s health and makes for a more productive and transparent conversation. When patients come prepared with their research, they open a collaborative pathway that may lead to a quicker diagnosis, increased trust, and better adherence. Providers need to embrace the fact that people will look for answers online and provide guidance on best practices.

Going beyond ‘let’s make an app for that’

The key to a successful solution is focusing on the process rather than the outcome. Before building a complex and expensive solution, it is important to spend the time listening and uncovering insights. Getting the underlying need correct early de-risks a high-stakes product build later.

Start by… Convening the users that have the most perplexing behaviors and unpacking what they need. This allows you to develop something with high adoption, while building awareness throughout the process. Our work alongside CommuniVax did just that, and it continues to strengthen and sustain the local community health sector.

Case Study: Co-creating health equity with the Community Health Access Toolkit

Meeting people where they are 

As we look to the future of healthcare, we must put the patient first. The social media platforms like TikTok that patients are turning to for information and community only show existing gaps within our healthcare system that can’t be ignored. They are a signal of what people need and can’t seem to get. People need accessible information about their health, and a place to look to for a sense of community and belonging. Leading healthcare organizations are challenged to re-imagine how they serve people. The good news is that design can help build the roadmap.

References

1 —Semigran HL, et al. Evaluation of symptom checkers for self diagnosis and triage: audit. BMJ : British Medical Journal 351 (1). 2015. https://dash.harvard.edu/handle/1/17820908
2 —Williams C. TikTok Is My Therapist: The Dangers and Promise of Viral #MentalHealth Videos. ADDitude: Inside the ADHD mind. 2022 March 31. https://www.additudemag.com/tiktok-adhd-videos-self-diagnosis-support/
3 —Semigran HL, et al. Comparison of Physician and Computer Diagnostic Accuracy. JAMA Intern Med 176(12). 2016 December. https://jamanetwork.com/journals/jamainternalmedicine/article-abstract/2565684
4 —Fox S, Duggan M. One in three American adults have gone online to figure out a medical condition. PEW RESEARCH CENTER. 2013 January 15. https://www.pewresearch.org/internet/2013/01/15/health-online-2013/
5 —Sweeney JF. The eroding trust between patients and physicians. Medical Economics. 2018 April 10. https://www.medicaleconomics.com/view/eroding-trust-between-patients-and-physicians
6 —Special Report: Trust and Health. Edeleman Trust Barometer 2022. 2022 January. https://www.edelman.com/sites/g/files/aatuss191/files/2022-08/2022%20Trust%20Barometer%20Special%20Report%20Trust%20and%20Health%20with%20Talk%20Track.pdf