Patient engagement, which has alternatively been known by many names, including patient centricity and patient activation, refers to the process of involving and empowering patients to improve their health care. By improving patient engagement, it is thought that overall health can be improved, and health care costs can be reduced.
In the health care industry patient engagement can refer to nearly any program with an element of outreach to the patient. Whether to inform about an illness they may have, provide treatment options or information on what can be expected from treatments, patient engagement usually begins with an educational element.
Adherence programs can also be classified as patient engagement. For example, after a drug has been prescribed, an adherence program might provide information about the medication, tips on why it is important for their condition and reminders to take doses at the appropriate times. Numerous studies have demonstrated that when patients are engaged, such as outlined in the adherence example, they take drugs as prescribed, leading to fewer issues and potential emergencies – and better outcomes for the patient, the provider and the insurance company.
Patient Engagement in Clinical Trials
With the growth of engagement in health care, so has engagement risen in the world of clinical trials. Rather than programs with outreach elements, clinical trial patient engagement usually involves helping patients participate in clinical trials. These can include online communities or advocacy groups explaining how to get involved in new research, or information provided about a trial: anything from the benefits of joining the trial to sharing results and outlining how the research is helping bring new medication to market.
Even as patient engagement in clinical trials takes multiple shapes, the end goals are nearly always the same. Provide the patients with the needed information and motivation throughout the trial to encourage better retention and compliance – critical factors to the success of any clinical trial. Patient drop-out hovers at approximately 30-35 percent, but with new tools, patients have more options for engagement and more support for remaining in a trial.
Services such as Cenduit’s Patient Reminders tool offers a good example of digital patient engagement in support of retention and compliance. With automated, personalized text messages, emails, calendar alerts or voice messages, the tool provides sites and sponsors resources to not only remind a patient of a scheduled appointment, but to help them come prepared for the visit.
These types of tools have been changing and improving over time, and with the advent of social media, the use of digital and social platforms has accelerated the effort to provide ongoing support to patients in clinical trials. Today, cloud-based systems like Cenduit’s allow each individual investigative site to set up and administer messaging to patients as-needed. By engaging sites directly in the patient adherence process, sponsors not only reduce their costs but save time and effort for site personnel.
More than Just Sending Messages
As new tools for interacting with patients become available, patient engagement in both health care and clinical trials has shifted from sending messages to having conversations. For example, platforms where patients participating in clinical trials can communicate with one another in a de-identified way, providing support and motivation or the exchange of information are becoming more popular.
Industry organizations such as the Center for Information and Study on Clinical Research Participation (CISCRP) and the Patient Centered Outcomes Research Institute (PCORI) are driving this shift in viewpoint. PCORI is particularly active in demonstrating how patient centered research is more than just sending messages, but requires truly connecting with patients. The group advocates conducting focus groups with patients to help determine what is most important to them – what information do they need to know in order to participate fully in the trial. Similarly, CISCRP advocates that researchers treat patients in studies as valued stakeholders in the trial, instead of simply participants.
These organizations serve as representatives of the overall shift in the clinical trials industry – engaging patients to participate, provide feedback and stay informed at all stages of research.
Role of IRT in Patient Engagement
Interactive response technology, or IRT, refers to technology platforms that help manage various aspects of clinical trials – from supply chain management to patient randomization and more. As discussed earlier, IRT providers like Cenduit are actively involved in advancing this trend of patient engagement. In light of the shift from messaging to patients to communicating with patients, companies are looking more holistically at how the patient fits into the trial overall.
As an interactive service, IRT will play a large role in patient communication, providing new tools for patient-to-patient, patient-to-provider and patient-to-investigative site communication. Mobile apps are being developed, clinical outcome assessments are going electronic and compliance messaging is becoming more and more customizable.
Cenduit’s Patient Reminders tool, for example, is being improved to include several new features to improve the ability of sites to work directly with patients, in real time, through the IRT platform. Tools like Patient Reminders are also dealing with more critical factors that affect the patient throughout the course of the trial.
What’s Next?
Patient engagement will only continue to grow – mobile apps are becoming more popular tools, and regular messaging to create deeper engagement in trials is becoming the new language for talking about compliance and retention. Providers are positioning data tools to allow for patient data entry and looking for opportunities to build direct patient contact solutions.
Modern tools are creeping into the world of clinical trials. With the growth in wearable technologies, like fitness trackers and heart rate monitors, data is becoming both easier to gather and exponentially more plentiful. As more data is being collected, questions arise about how best to use that data, how to sort it and how to store it. The next step in patient engagement will be determining how to correlate new data with patient assessment to provide actionable information to health care and clinical trial practitioners alike.
Chris Dailey is the Global Head of Technology at Cenduit, where he manages global research & development and IT functions. Dailey is a technology leader with broad experience building and leading teams, defining and developing product and architecting complex systems. He holds a Bachelor of Science degree in commerce from the University of Virginia and a Master of Business Administration Degree from the University of Maryland.