The imperative to enhance access to quality care and research is a central concern gripping both the healthcare and pharmaceutical sectors. At the heart of this challenge lies the crucial necessity for clean and streamlined patient data, which currently suffers from inadequacies in comprehensiveness and accuracy. Addressing this pivotal issue carries immense benefits, particularly in the sphere of targeted trial recruitment efforts. By harnessing better patient data records, the possibilities for revolutionizing drug development and elevating patient outcomes become increasingly promising.
The significance of having access to complete and well-organized patient data cannot be overstated, as it empowers researchers to efficiently identify appropriate candidates for clinical trials, leading to expedited recruitment processes and reduced financial burdens. Additionally, the precise matching of patients to trials results in higher probabilities of administering suitable treatments, thereby bolstering the credibility and reliability of trial results. The cumulative effect of these advancements fosters an environment that champions evidence-based medicine, thereby propelling medical progress and propelling us towards a future marked by elevated healthcare standards and pioneering pharmaceutical innovations. Embracing the pursuit of improved access to quality care and research is not only the need of the hour, but a transformative step towards realizing a healthier society.
Sondra Pepe, Senior Vice President, Product Management, at AiCure, spoke to HITConsultant on the ways digital health technology can make clinical research and care more accessible.
What does the status quo look like in terms of access to quality care and research? Who are the most vulnerable stakeholders in the status quo?
Sondra: This is a topic that is very near and dear to my heart! Thank you for the opportunity!
To start off, what I have seen is that there are certain geographic issues that arise. Certainly, folks that are in more urban areas and are near academic medical centers will naturally have more access to research as the quantity of research happening there is generally higher. However, there is also a ‘knowledge’ and ‘access’ gap in terms of one’s healthcare providers being knowledgeable enough to talk to their patient about it, or even having the time to talk to their patient about it. I know a lot of healthcare providers who are already getting into trouble with their administrations for spending too much time with a patient. In contrast, to have the luxury of spending extra time with a patient and explaining what clinical research options may be available really isn’t afforded to most healthcare providers. Not to blame the healthcare providers, but quite often, a patient will be left in a situation where the healthcare provider has said something along the lines of: “There’s nothing else I can offer you, but you could consider clinical trials.” And all this does is leave the patient wondering – what on earth is a clinical trial?
Thanks to COVID, most people did learn what a clinical trial is, so at least it is less cryptic of a term now! And in the last few years, there has been a noticeable rise in patient advocacy groups and NGOs that help patients find clinical trials, along with an increase in the development of technologies that help with patient search. But most patients leave that doctor’s appointment knowing that their doctor told them to potentially go look at clinical trials. They will open up something on the web and get confused either because they don’t know whether they are eligible for the trial to begin with or because they get too lost in the complex medical jargon. The tests and assessments their provider did may not be the relevant tests for the inclusion or exclusion criteria within the trial, and even if they are, the patients don’t always know the significance of these tests deep enough to match themselves to the right clinical trial. In the end, what happens is that we leave people in this bind. Ultimately, the promotion of equal opportunity and diversity will be about making these resources and options more understandable and accessible to everybody.
What is the role of digital health in challenging the status quo?
Sondra: Great question! Something that I look to as a really good standard to work towards is FlatIron Health, which has recently expanded into their clinical research side as well with successful acquisitions. One of the pieces they acquired is called ‘Clinical Pipe,’ which connects EHRs to clinical research systems. That allowed getting the relevant researchers on the same page of a particular data set, ensuring that the inclusion/exclusion criteria can be appropriately and accurately reviewed across a set of patients.
Other than that, I have tons of patient stories from the time I helped patients find clinical research when I was at Aloha, where we were using AI to do natural language processing to do so. But back then, I was the ‘human in the loop,’ where I just helped patients find stuff. Over there, I saw tons of patients whose health records did not accurately reflect what was going on with them. A personal example (so I don’t violate anybody else’s confidentiality) is how in my early 20’s, I took metformin for PCOS. Metformin happens to be the first-line treatment for diabetes as well. From the moment I was prescribed that drug, to this day, my insurers offer me help ‘for my diabetes’. I don’t have diabetes! This proves that data out of context in these systems can get very messy for the patient, and that even these medical systems can get confused. Ultimately this leads to a lot of mistrust among patients, which further discourages them from seeking appropriate care in a timely fashion. I know why I am being offered ‘help for my diabetes’ – someone else in my place would not.
To sum it up, the role of digital health in challenging the status quo would be correct identification and organization of ‘clean data,’ which can be used to benefit all those who seek healthcare.
What are your thoughts regarding the need for increased transparency around the clinical trial options available to patients? How can we re-think clinical studies for the benefit of the patients?
Sondra: In addition to finding what clinical trials certain patients might be eligible for, transparency around what will be involved from the patient’s side is really needed. Additionally, these patients would require certain support based on what is required from them. Digital technologies and their transparent use can bridge the gap between patients and the requirements of the clinical trials they are enrolled in, allowing for improved access to these trials, and ultimately, improved compliance as well.
We need to use these technologies to ask less of patients and to ultimately deliver more. Electronic consent solutions, illustrations, and timelines are just a few examples of how we can shape the patient experience while keeping them in the loop about what is going on.
Furthermore, planning studies and building designs that can leverage these technologies to ‘ask less of the patient’ is the need of the hour. This notion was abruptly forced onto the world during COVID-19 as everyone had to adapt overnight; however, we can do so much more in terms of the way we think about designing studies to decrease the frequency of patient visits and make clinical research more digestible for them.
What is AiCure, and how can it play a pivotal role in making clinical research and care more accessible?
Our flagship offering is ‘Patient Connect,’ which is a mobile app used by patients for real-time dosing instructions that leverages computer vision to ensure medication adherence. With Patient Connect, physicians can remotely assess how patients take their medication using their smartphone, computer vision, and AI, while activating dosing support for all routes and methods of administration. With ‘Patient Connect,’ users can get updates and reminders on their smartwatches and their phones so that they can get reminded if they haven’t taken their medications.
Not only have we seen improved medication adherence because of the app, but the frequency of patient visits has decreased since a simple AI solution can rid them of so much hassle!
Over the years, we have also added video-chat options to the app so that physicians can conduct very secure HIPAA-compliant meetings and follow up with patients when needed.
Our goal is to reduce patient burden and cognitive load, and we aim to make tasks such as visit reminders, site numbers, medication reminders, consent brochures, and follow-ups very simple and accessible for the general population. I personally consider ‘Patient Connect’ to be a patient’s companion to the clinical study and their concierge connection to the site.
