Patient Centered Electronic Data Capture

By Chris Maconi | @chrismaconi

Putting patients at the center.
There is a evolving trend in healthcare toward organizations taking a patient-centered approach toward care delivery. Concepts like “personalized medicine” are becoming a reality through new innovations in modern healthcare that allow providers to better understand the symptoms and needs of each patient as individuals, and lets them custom tailor treatments that are best suited to their patients on a case-by-case basis. Providers are learning that centering on the patient allows them to provide timely, relevant, and comprehensive data capture opportunities to their patients that blend seamlessly into their lives. These efficiencies improve patient engagement, data quality, and data accuracy. These same concepts can be readily applied into the clinical trials space, with the same opportunity for enhanced data quality, accuracy, and speed of capture.

Applying this to clinical trials.
In clinical trials, taking a patient-centered approach requires designing a method to conveniently and unobtrusively collect data directly from patients in real time as they live their lives outside of your study site.
By using a real time, tailored digital applications, not only do we make it better for the patient; the data and the CRO ultimately benefit as well.

• Increased accuracy.
  By receiving data directly from the patient, on a real time basis, we can eliminate most human error. Remember what you had for lunch last Tuesday? Neither do I. Instead of waiting on the patient to accurately recollect past information, we can implement a real time data capture which can greatly improve data accuracy by taking recollection out of the equation.
• More data.
  Today it’s not uncommon to ask study participants to set aside a large chunk of time to fill out a lengthy survey every few months, often requiring them to remember points of information that are days, week, or months in the past. By checking in more frequently, say daily, we can ask a handful of questions with less participant burden. This gives us higher resolution, and more robust data sets to work with.
• Get to data lock faster.
  With patients entering in the data directly, and no downstream data transcription necessary, incoming data is available for review on a real time basis as submissions are made. This reduces the need for staff time related to data entry, and because patients are entering the data, this reduces the likelihood of errors.

So what does it all mean?
As we all know, the healthcare industry can be slow to embrace technological change, but with the introduction of EHR’s, new value based economic models, and new disruptive digital therapeutics and medical devices, this is changing. By embracing similar, patient-centered technologies and methodologies, we can extract quick results, improve the quality of our work, and ultimately, improve the lives of our study participants and patients.