Preprint: Designing and Developing an eHealth Program for Patients With Persistent Physical Symptoms: Usability Study 2023 Christensen et al

Ugh. I was reviewing Precision Medicine lately - it is a nebulous term that can cover all sorts of things, like genetic screening, and also use of technology. It seems that useful medical innovations don't bother using the Precision Medicine branding, but the use of technology to create behavioural interventions does. The term sort of creates a warm fuzzy glow about how screening at birth can reduce the incidence of serious health problems, or how testing wastewater can find out where Covid outbreaks are, things like that. But a recent review of all papers using the term precision medicine found that they were overwhelmingly about apps and self-help treatments - commercial products designed to put the onus of achieving health on the individual. It was interesting that the review found that only a very low percentage of the studies were randomised controlled trials, or even envisaged doing a randomised controlled trial at some point. Of those for which there was trial data, very few reported a useful outcome.

This paper seems to be more an advertising project than real science - e.g. "We talked with 11 people, only 4 of whom actually have the (made-up) condition to get feedback on our app."

Figure 2

A market research process is presented as the 'democratisation of the development'.

 

It sounds like usablity testing was worth doing, but as to the content of the material, which was not the subject of the research, it sounds like the same old CBT.

Crossposted with Hutan.

Edit:
It was pretty basic flaws in the design the lay people were picking up - which showed up just how rubbish the design was.

 

The sample:
They aimed to get 12 patients who experience PPS but for whom the severity is not bad enough to qualify them for a diagnosis of persistent physical symptom disorder:

They got 4 patients - Covid and all that, but it's still surprisingly low from 6 GPs given that people with persistent symptoms are supposed to be clogging up the GP clinics all over the world. And also given the user research was done online. But never mind, they refer to a 'convenience' sample, they found some random people to pretend to be PPS patients.

Perhaps you too will be blown away by the sophistication of the 'thinking aloud' method:

Because they found the patients and lay people interacted similarly with the buttons etc, they mostly used lay people for later rounds:

So, that sounds like democratisation when it comes to what size button is preferred, but not much patient input when it comes to specific content.

 

Yeah That’s just testing the look and feel of some web pages it’s not testing the whole user experience.

 

Presumably this should be just an early stage in testing an interactive digital product. As I said above, the flaws they found were very basic, like people needing to be able to find their way through the process, and not get bogged down with too much text or with unclear tasks. It hardly needs to be written up as a scientific paper, it's just basic first stage product testing.

 

Patients were more interested in the content than the lay people, even though the developers "explicitly stated that reading the content thoroughly was not necessary during the usability testing".

It sounds as though some of the medical terms had speech marks put around them. It's hard to imagine what they were, but not so hard to imagine patients being annoyed that their symptoms were being invalidated.

Yes, this isn't science, it's a record of a fairly low level effort at usability testing. It isn't worthy of being a paper.

It's an example of what seems to be an explosion of health apps, designed to "help" people be responsible for their own health. They may sometimes be useful, but it's easy to see how they will appeal to health system decision-makers who don't have enough money or medical staff to have patients actually receive care. As with many of these papers, there is little consideration of how delivery of health care via apps may increase societal inequities -not everyone has access to a desk-top computer, not everyone has confidence with computers.

It's revealing that the abstract talks about the patients costing the health system and society a lot, rather than the ongoing existence of the health condition being the problem.

There is no consideration of the validity of the underlying premise of the software - presumably that people can be trained to realise that the excruciating back pain or whatever it is they feel is just normal, and nothing to complain about. As I mentioned in my first post, like most of the papers on health apps that were included in a very large review, there is no stated intention to trial the software at some point to see if it does in fact work.

 

Reading the content thoroughly really isn’t the point of these online programmes, silly patients looking for something of value!