Remote ADHD Research in the time of COVID
I was invited to write this blog after transitioning our ADHD Clinical and Translational Studies Program to tele-research. For several reasons, the actual technological aspects of the process were a relatively simple accomplishment. Writing this blog, less so.
The main reason for the ease and rapidity of our digital transformation was that we are housed in a Research 1 academic medical center with impressive capacities and infrastructure. The technology for digital research, digital education, and digital therapeutics has existed in abundance for decades (see Marhefka et al, 2020). Once the administrative barriers at our institution were dropped, I made quick use of pre-vetted digital research tools that are regulatory compliant, and have been in use across many health fields with the exception of psychiatry. Our Information Technology and Infosec data security departments offered us options of using technology provided by small private vendors, developing our own apps, assembling a series of Google apps, or using a selection of internal resources.
Though I will try to present some useful information, it would not be feasible to write a review of all the potential applications useful for flipping a research program to tele-research in this space. Nor, I think, would the bulk of the clinically-oriented APSARD membership be interested in such finely detailed technology reviews. But, there is a commonality of interest shared between clinicians and clinical researchers in this transition to high-tech practice. The same forces that pushed our team to tele-research also pushed most clinicians’ practices online. This is uncharted territory for many psychologists and psychiatrists who worry about what we miss when we are not physically present with a patient, participant, or client.
We responded to an emergency, driven by a desire to protect our patients and our teams. We all sought to adhere to our fields’ regulatory and practice standards. We share common concerns about building rapport and maintaining alliances with our patients in the digital environment. We share the need to harness tech tools, collect accurate self-reports, and make professionally sound observations at a distance. Ultimately, as we shifted our work modalities, we upheld our ethical obligations to our participants, and maintained the superior standard of care for which we are regarded. Now that we are a month into the social-distancing of our lab, the immediate actions that our lab’s principle investigator took to protect us is reflected in the guidance being issued by our local and external IRBs, and the compliance teams with which we work.
We have had successes worth maintaining after life returns to normal. We established secure databases that disseminate and archive consents and self-report scales. They are attractive, easy to use, and regulatory compliant. They are automatically time stamped, date stamped, and audited, and viewable by both the respondent and the study team member on the back end of the interface. When paired with video-conferencing, this provides a good substitute for face-to-face meetings. Our research partners are able to use these same databases with their own participants, making multisite data collection and single IRB coordination both simpler and more secure. The videoconferencing also allows our clinicians to provide continuous care while travelling, or when otherwise off-site. It also allows busy patients to receive care when they cannot attend a scheduled appointment, preventing data loss and encouraging continued compliance with our protocols.
There are some serious challenges to still overcome in our digital shift. We have no way of performing virtual fMRI at the moment. While I am watching the development of wearables and portable technologies with interest, none yet provide the same type of data. With an abundance of caution, we paused a study that collected saliva for genotyping, lest we unintentionally expose the collectors and ship COVID-19 pathogen to our colleagues’ lab. This is not a problem with a lack of technology or distance resources. This is a complication of the unprecedented time in which we live. We also have some difficulty with drug dispensation and return for our clinical trials at the moment. We can courier drug directly from the sponsor to participants, and count drug over video-call, then have the couriers pick up the drug to return to the sponsors. But drug returned to our site will sit in our institution’s mail-room until personnel can be on-campus to receive them. Right now, the Samaritan’s field hospital is at the end of our block, and no one is entering our building. And external vendors can be unreliable. I watched with great annoyance as the VSee telehealth free platform, recommended by our institution, fell apart AFTER we submitted several applications for approvals for their use. Fortunately, Zoom and even FaceTime are HIPPA compliant, institutionally approved, and free alternatives for video calls. These are useful for research, since researchers do not need integrated payment features. This week, though, our city’s Department of Education pulled out of using Zoom for their classes due to privacy and security issues. I am waiting to see whether this impacts our research program, or whether the housing of Zoom behind our institutional firewalls enables us to remain compliant with Zoom. FaceTime can be ‘buggy’ when there are multiple parties on the call, as often happens with research visits. I have other platforms in the bullpen, just in case.
This flexibility of choice is an ephemeral thing in an institution as large as ours. At some point, these temporary freedoms will end. With our teams of regulatory specialists blessing any changes intended to protect participants, the Infosec data security unit providing lists of pre-approved platforms, and the Dean’s office waiving barriers to accessing these pre-approved tools, the bulk of our transition was made within a week. When these gifts are rescinded, similar feats will take months or years to accomplish. But, when normalcy returns, we will still have access to Virtual Private Networks (VPNs) to safely, securely, and HIPPA compliantly manage our regulatory and data archives. And, we will be allowed to retain what we have built behind our institutional firewalls. Our data, and systems, and participants will be secure. We will go back to having face-to-face meetings. But, we will retain the many valuable aspects of tele-research.
For additional reading about the use of technology in the research domain, read:
Marhefka, S., Lockhart, E. & Turner, D.A., (2020). Achieve Research Continuity During Social Distancing by Rapidly Implementing Individual and Group Videoconferencing with Participants: Key Considerations, Best Practices, and Protocols. AIDS and Behavior: Notes from the Field. https://doi.org/10.1007/s10461-020-02837-x