How should we use technology to improve Researcher-patient interaction? The question itself presumes that we understand what we mean by technology. Well for the most part we can tell what falls withing this bucket. Cell phones, smart watches, laptops, zoom meetings seem likely candidates. They can replace face to face encounters. They can replace pen to paper (or no. 2 pencils). Of course, 10,000 years ago pen to paper would have been considered an advanced technology. It beats chisel and clay. There is something about comparing it to the norm that makes us want to consider it technological. I presume we are elliptically saying that these elements are technological advancements
What do we hope to advance by adopting these newer technologies? Just read the web sites and PR from the companies that have this equipment and/or software. They usually (and correctly) speak about possible savings in time and or money by that approach. Having worked in Data Management and Biostats for a bit I can also say that accuracy was a big deal too.
Less frequently is the idea of accompanying new challenges. Sometimes burdens of implementation get shifted without preparation. Self-administered questionnaires via the smartphone mean patients have to learn to log on and follow the instructions. The patients have to remember their passwords – or go through the reset password process with double verification. It certainly removes burden from the coordinators or HCP who may have administered the survey in the old days and the burden increase for the patient seems minimal here.
One thing has been pretty clear to me over the years and that the shift to technology to save time and money also removes some human interaction. As it is with anything there is a cost and benefit to such implementations. Before we begin to place such value judgements on these parameters, we should catalog the consequences.
I think I can say this having been involved for many years int trying to make processes more efficient that some of the excision of steps had a great benefit. Removing human interactions can be good if those interactions are primarily experienced in a negative fashion. As it is with any process involving multiple stakeholders, it is prudent to take all the stakeholders into account to compare benefits and costs. This was not really done too much during my stint in the field. There has been more incorporation of other stakeholders, especially patients. I remember having to support arguments from patient experts about getting patient input prior to writing the protocol since their input on participation seemed important. Admittedly, most of my work was done in Phase IV (‘Real World”) settings. Conjecture around patient behavior and enthusiasm could be way off. Patients could and can speak for themselves.
Other stakeholders have long been ignored. See Brad Hightower on his LinkedIn page for a goodly amount of the challenges faced in that setting. One example that relates to these blogs involves the introduction of new technology to the research process. The variability of the technology can be overwhelming. Things that seem to be theoretically a great boost to efficiency and quality turn out to be wrongheaded rather quickly.
Company A has a great new way to implement data collection for their study. Let us suppose that they are correct in this self-assessment. They provide handhelds to the sites to distribute to the patients. The site staff will need to validate which smart device belongs to which patient and assist the patient in having their username and generating a password. Completing the date fields is a little laborious if you want to go back to birth dates and so on. Depending upon the patients and their familiarity with handheld devices and apps they will get through it.
Then there is the site software usually logged onto through the internet. They will typically have edit checks during and after uploading. Then if the data is inconsistent with the patient data the lucky participant receives a query. Say it is the patient’s birthdate does not match the patient’s entry. A bit of a go around ensues taking up more site time.
Then suppose that another sponsor had yet a different set of handhelds for the client. Different ways of logging on and so on. This is just the platform for data entry. It doesn’t even get to patient recruitment and retention.
This is not to say that these are insurmountable issues. People overcome them all the time. There are efficient ways to make this easier and better and then there is the old bludgeoning approach. However, it was a pretty common complaint that there were too many platforms from each sponsor making the work too hard in aggregate. I hope that this has lessened in the past few years.
Let’s return to the beginning of this blurb and think about technology in a global way. The implementation of a new technology is meant to produce efficiency by replacing some other process (an older technology and/or manual labor). I think either way this would lessen the amount of human interaction. Take a look at the impact of social media. Initially it was promoted as a way of letting people stay in touch more easily than being face to face. That is true, I think it did that. I like using eGreeting cards because it is cheaper, allows me to be more creative and I stay in touch more than I would have otherwise.
On the other hand, technology has been replacing human interaction face to face at dining establishments. It is just so weird to see people texting or communicating with people not at the table and not communicating with the people who are there. That is a message maybe you would not want to send (or maybe you do). It is remarkable to see a family of four who are exercising their thumbs but almost fearful to look up.
The upshot is that the technology may seem to be a benefit in a microcosm. One sponsor’s particular platform may bring more benefit to a study in splendid isolation but 5 different sponsors with 5 different trainings and 5 different site implementations might be overwhelming. The sponsor might even say with these efficiencies the site coordinator should be able to spend less time on the study. Perhaps, but it has to be thought out in a larger context. More of that in another blurb.
None of this poses an ethical issue in theory. I believe that you have to approach the implementation of a particular technology to assess its ethical status. Until next time.
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