There’s an intense discussion on how healthcare workers could and should relate to the digital health revolution. We’ve done our fair share, writing tons of articles, like The 7 Must-Haves For The Doctor Of the 21st Century, or 5 AI Tools That Could Help Build A Medical Practice, and The Impact Of Digital Health Technologies On The Future Of Medical Specialties, not to mention 6 Potential Medical Use Cases For ChatGPT. And these are just a few recent examples from the many dozen posts on the topic. On the other hand, information on how to become a “digital patient” is difficult to find.
Thus we decided to level the field slightly and come up with a list of suggestions. Here are eight tips that will help anyone to start walking the path of empowered patients – and impress their doctors with these 21st-century skills.
1. Just desire to get engaged with your care
Digital health doesn’t equal using gadgets: it is – as I have said a million times before – the cultural transformation that turns the patient-doctor hierarchy into a partnership. It is your health, and as an empowered patient, you will need to actively engage in your care.
To put it very bluntly: even the best of doctors in the best of healthcare systems will not care about it as much as you do. They will of course do their best, but at the end of the day, the single most important stakeholder is you. Think about the analogy of building a house: you can hire the best contractor and the best professionals, but none of them will care about your money/budget as much as you do. You need to trust them, and cooperate with them, but also make sure that you understand all major decisions and their (financial) impacts to make the decisions that work best for you.
It is the same regarding your health: you can’t throw your hands up in the air and expect doctors or the healthcare system to solve your problems for you. If you are set to become a 21st-century patient, play an active role in your own care, and become a member of the care team. You will get there just by the will to participate, by asking relevant questions, and using (the right) online sources and technologies.
2. Know your resources
“Just don’t Google it” is one of the worst pieces of advice you can get. You should absolutely Google it, doing it the smart way. You need to learn how sources differ and understand which sites to trust and where not to look. Don’t be afraid to ask your doctor about recommended sources and the ones you should avoid.
An empowered patient knows how to recognise credible medical information. In general, always look for sources where you can find the Impressum, where content is validated by healthcare professionals, where you can find contact information and so on.
Peer-to-peer information (like forums or social media channels) on health topics can be dangerous – although we have to note that in specific cases they can also be invaluable. For example, a good patient group for a rare condition can equip you with relevant and valuable information you would not likely find (fast) for yourself nor would you necessarily learn from your doctor. Not because they are willing to keep it from you, but because patients understand what difficulties other patients face, or what practical info they might need to live more easily with a certain condition.
3. Only measure data for a purpose
We, as 21st-century patients, are not using digital health technologies because they are cool. Whenever you start using a device, understand the goal it can help you meet.
A fitness tracker is just an overpriced quartz watch unless you use the data to monitor/improve your exercise regime. Your sleep sensor does nothing if you acknowledge that you are chronically under-rested and leave it at that. The results of your microbiome analysis are little more than digital waste if you won’t adjust your lifestyle based on its findings.
4. Be aware of your genetic drug sensitivities
DNA drug sensitivity tests (or pharmacogenetic/pharmacogenomic testing if you’d like a fancier name for the same thing) will inform you how your genes affect your body’s response to medications.
These tests look for changes or variants in genes that may determine whether a medication could be an effective treatment for you or whether you could have side effects to a specific medication.
Knowing about your personal traits and sensitivities will not only impress your physician, but it can also improve your healing process by choosing drugs that work best for you.
5. Cherish that partnership
Empowered patients understand that doctors are not omnipotent, and can’t possibly be highly familiar will all existing technologies. You can share responsibility with them, which takes a huge burden off their shoulders, and you can enjoy it as your physician takes you into the medical team as a peer.
You have to look for guidance and partnership to discover ways together, solve problems together, and find the answers together.
6. Understand AI’s limitations
A digital patient in 2023 will not only Google but will also ask ChatGPT about their health issues. But they also understand the limitations of artificial intelligence and large language models and will present their findings to their doctors accordingly.
These large language models today are already capable of very human-like interactions on a wide range of topics and can be used for zillions of tasks. You can pick their “brains” for writing emails, discovering creative ideas, and acquiring general knowledge about pretty much everything, you can use them to create complicated excel formulas or generate python codes, write love poems or essays.
However, once you start experimenting with them, you will also quickly learn about their limitations. The first limitation regarding health issues is that you are very unlikely to gain in-depth knowledge about a condition. The algorithm will explain in a clear and correct manner the basics of diabetes, but will not be able to reliably answer very specific questions.
And secondly (and maybe surprisingly) we have to be aware that these large language models don’t actually “understand” what they are talking about. They have billions and billions of curated source material, they were trained carefully “to make sense” of it, sort and present the information deducted from it. But they don’t think in the way we humans think of thinking, neither are they intelligent in a human way – their IQ is still zero.
It is absolutely possible that ChatGPT (or other models) will come up with useless or wrong conclusions – and you have to be aware of it, and take their output with a pinch of salt.
7. Own your health records
To become an empowered patient, be the information overlord in your health issues. Know where your medical records are. Manage the information you have at home either on paper or in digital form. Know where to look and what to look for if you need this information.
This is certainly much easier in some countries (with unified medical records that are accessible to patients online) than in others (where information may be scattered over the servers of various institutions). Wherever you live, whatever your possibilities are, always aim for the most possible control over your health data.
8. It’s impossible to keep up with the evolution of information
The tempo of how medical knowledge grows has accelerated beyond belief in the past decades. In 1950 some 50 years were needed for it to double. By 2010, doubling only required 3.5 years. And now medical knowledge doubles every 73 days.
There is no way a human being could keep up with this pace. If your doctor reads two new scientific articles every evening related to their fields, they will still be a few hundred years behind by the end of this year. And while the AI revolution will serve doctors well in this regard – I believe algorithms soon will be able to summarize the new relevant knowledge for their specialities -, we have to keep our expectations realistic.
It is just impossible that your doctor could learn everything about everything. Meanwhile, we, as patients, have unprecedented access to quality medical information: scientific databases are online and available, and we have the motivation no other person will have about solving our health issues.
Don’t be afraid to ask for guidance on where and how to educate yourself. In 2023 it is absolutely possible that you can find important, relevant new scientific information your doctor may not have heard about. While you’re not going to match a physician’s medical knowledge in general, you can become highly literate in niche topics that are of interest to you.