Update PhD research: ethical dilemmas in e-health
It's been a while since I've updated you on my PhD research. To the outside world, it may seem like things have slowed down, but that couldn't be farther from the truth! In this post I'll explain my progress so far and the unusual hurdles I've had to overcome to be able to start a new study.
At the time of writing, I'm staring at a Loesje quote that reads: "Research has shown that doing research is way more fun than finding the answers.'' 'Research has shown that doing research is way more fun than finding the answers.'I must admit, there's some truth to this. It would be incredibly boring to immediately stumble on the answers to all of your research questions. Overcoming the challenges on the bumpy road to success is much more satisfying.
More importantly, the research process raises new questions that require new research. Well, my research does in any case.
What happens when you give a patient a "smart bandage"?
Have you ever thought about it? I have. Although I must admit it was only after I set up a large-scale validation study on different wearables that I realized how much more there was to it. There's an important ethical issue involved in studying innovative telemonitoring solutions, both for patients in hospitals and for patients who are discharged. Let me explain why.
Imagine you have a "smart bandage" that can continuously monitor a patient's vital signs but that hasn't been validated yet. The first step is to determine whether this unvalidated solution is capable of producing reliable results, without sending the potentially inaccurate measurements to nurses (see my previous post on the importance of validation).
I had assumed that the Medical Ethical Committee (METC) would approve my detailed research proposal quite quickly. I was wrong. The committee felt that "an alert should be sent if the bandage suggests that the patient is in life-threatening danger." They found it ethically troublesome that a patient could be discovered lifeless in the morning despite measurements having been taken at night (through one of the bandages) that weren't used
Ethical dilemmas in e-health research
I agree that this would be terrible and therefore find their request perfectly understandable. However, this is where the ethical dilemmas of innovative new technologies come in. A nursing unit that usually checks a patient's vital signs once in an eight-hour shift, now has continuous stream of information available about these vital signs. "This is where the ethical dilemmas of innovative new technologies come in"
Until these measurements have been validated, they shouldn't be shared with nurses. Sounding the alarm based on inaccurate information can also have deadly consequences. The nurses would focus their attention on the wrong patient. Add to that the fact that we haven't studied how to share certain information with the nurses at any given time.
But what if, in hindsight, one of these wearables could have predicted a patient's decline? This unexplored area once again shows that nursing units specializing in high-risk patients are not always capable of identifying patient decline in between checks. As a result, there is a high demand for something different, including among nurses themselves.
Do I continue with the study anyway?
Of course! The team managers and the nurses therefore agreed to sound the alarm for potential life-threatening situations. Not based on the unvalidated wearables, but based on the validated reference standards. We have since been granted approval from the METC and are busy rounding off the last IT preparations. The plan is to start in the next few weeks!
The first home measurements
This ethical tale on the importance of creating a telemonitoring safety net is not only relevant to nursing units, but also to patients who were recently discharged from the hospital and have a higher risk of developing complications. In a parallel project that will soon be launched, I plan to research the feasibility and the added value of remote vital sign monitoring using wearables for high-risk patients in the first week they were discharged from the hospital.
There are several conditions involved in determining the added value of remote vital sign monitoring in the home. One of the conditions I hope to create from a technical-medical perspective is the accurate transmission of trend data from patient to doctor for interpretation purposes. The doctor will assess this information remotely (without any clinical implications at this point, as its still in the feasibility testing phase). Long term trends provide more information about a patient's health than one-off measurements. "It's my job to transform this confusing mess of information into something understandable"
At this point, doctors can't do much with the rough data in its current form (see photo). It's my job to transform this confusing mess of information into something understandable. As you can probably imagine, an overload of information – sometimes up to forty data points per minute – is impossible to interpret. The question is: What is the minimal frequency required to monitor a patient remotely? Another question is: Which support structures do we need to transform this technology into something of value for both patients and caregivers? These are the types of questions I hope to answer in my research!
Sample of raw data collected over a four-hour period (imagine what seven days' worth of data would look like!)
I could write an entire book about these experiences alone, not including the patients' side of the story! This study will only have a social impact if I can determine the "value" of it and the telemonitoring concerns from the perspective of the patients, the caregivers, and the health-care providers. Of course, I will include this at an early stage in the study by meeting with all parties involved.
In my next blog post, I'll explain the research methods I plan to use. I'll also share some big news!