Impact of Digital Health on Cancer Patient Engagement and Experience

Patient engagement is a national healthcare priority, which is particularly applicable to oncology medical care due to its complexity and need for shared decision making between the patient and a range of multidisciplinary care team members.1 Despite this, and because of the complexity, patient engagement continues to be inconsistent in its application resulting in less than optimal patient experiences and, by default, treatment outcomes that are not maximized.1

However, more and more research is demonstrating that digital health interventions can support and enhance a range of patient engagement behaviors, such as health literacy, shared decision-making, and self-management, that improve experience and outcomes.1

Patient health literacy supports shared decision-making

When it comes to patient health literacy rates, the higher they are the better they support the productive shared decision-making essential to value-based cancer care.2 One area of healthcare where the knowledge and understanding of patients is growing in importance because of an increasing frequency of use is diagnostic imaging.2

Researchers who were looking to evaluate the impact of digital versus paper-based education on patient knowledge conducted a randomized study of 2,226 participants.2 Results showed a 45 percent increase in patient comprehension of diagnostic imaging and ionizing radiation when educational information was delivered through a digital platform.2 Specifically, 66 percent of individuals receiving web-based information were able to accurately describe what ionizing radiation was compared to 21 percent of those receiving printed educational materials.2

Enrolled patients were randomly assigned to one of three groups: an interactive education group (web-based information delivery), a document education group (paper-based information delivery), and the control group, which received no educational information on ionizing radiation and imaging procedures.2

Additional investigator findings included digitally engaged participants who were far more capable of selecting the imaging methods that use ionizing radiation as well as those methods with the highest radiation doses when compared to the document education group.2 Additionally, interactive education group members were far less anxious about undergoing diagnostic imaging scans that do use ionizing radiation and, to a lesser degree, were more likely to be able to describe the effects of radiation on tissue.2

Mobile health plus coaching improve self management

For patients with chronic myeloid leukemia (CML), having the confidence to self-manage their long-term daily medication schedule combined with high levels of health literacy about their disease and oral drug therapy are essential to treatment success.3 When patients adhere to a continuous optimal daily medication dosing schedule, they are more likely to experience positive outcomes including improved progression-free and overall survival.3

Standard of care for CML patients is a tyrosine kinase inhibitor (TKI) taken orally, often for the rest of their life.3 TKIs are associated with many side effects like diarrhea, nausea, and edema in the face and lower legs, among others.3 However, these toxicities have a negative impact on treatment response resulting in 25 to 33 percent of patients failing to achieve a required minimum adherence rate of 90 percent.3 Non-adherence rates of 10 percent or greater due to adverse effects and forgetfulness is a major contributor to treatment failure, particularly for the newly diagnosed.3

To evaluate the clinical feasibility, acceptability, and usability of a cancer medication adherence intervention, researchers designed a multifaceted 10-week mobile patient engagement system combined with coaching as a pilot test with 10 CML patients.3 It was the first adherence protocol to integrate mobile platform-based daily reminders, routine side effects assessments, and tailored evidence-based self-care guidance provided in real time with personalized nurse-led coaching consultations by phone.3 Coaching sessions were shaped by patient questions, adherence rates, and adverse event profiles and conducted by nurses trained in motivational interviewing techniques to support patients in adopting self-management behaviors.3

Both nurses and CML patients endorsed the pilot program believing it would be most beneficial for newly diagnosed patients just beginning their drug treatment regimen.3 Specific benefits reported by cancer patients included resolving uncertainties about symptoms with expert input that provided reassurance, establishing daily medication routines, feeling more knowledgeable and encouraged about decision making, and greater awareness about the importance of self care.3

A variety of technology limitations were reported that researchers believe may either improve over time with advancements or become accepted limitations of this type of intervention.3 For example, some patients found it challenging to respond to text reminders within two hours because they were not used to carrying a cell phone or experienced slow internet speed due to their geographic locations.3 Other difficulties included cell phone--specific behaviors, such as being out of phone credit, not keeping batteries charged, not turning the phone on, and losing their phone.3

Mindfulness and relaxation self-care app support adherence

When patients receive a cancer diagnosis, it usually elicits greater distress than any other medical diagnosis.4 Yet psychological suffering is not usually addressed as part of oncology care despite evidence that it interacts with a patient's biological processes.4 In addition, untreated stress and anxiety can reduce quality of life in ways that often impact adherence to the recommended cancer treatment.1 When adherence decreases, so does the ability to maximize patient experience and recovery.4

To evaluate the feasibility and acceptability of a mindfulness and relaxation mobile health intervention using a self-care app, Swiss researchers recruited 100 cancer patients for a 20-week prospective observational study.4 Patient self-reported measures on anxiety, depressive symptoms, quality of life, resistance to change, and openness to experience were evaluated at the start while data on actual time spent using the programs was collected by the app for the duration of the study.4

Findings included 54 percent of patients who used the self-care app mindfulness and relaxation programs continuously for 10 weeks.1 Initially, participants engaged in four app-guided sessions per week, which declined by half, to two, by week 10.1 Adherence rates were comparable to existing research on mobile health interventions for oncology patients and did not suggest they would inhibit this type of therapeutic support.1  

As one of the first studies to closely examine patient feedback, participant characteristics, adherence rates, and potential predictors for adherence, researchers were able to establish four statistically significant predictors for patient engagement with this protocol.4 Gender, specifically female, was the strongest predictor for participating in the mindfulness and relaxation mobile health study, as well as adhering to the app exercises once it started.4 While this is in line with some existing research and not with others, investigators of this study suggest the type of intervention might be more relevant for gender as a predictor of adherence.4

Higher openness to experience scores were the second predictor of which participants would continuously use the mindfulness and relaxation app exercises throughout the study.4 This finding also aligns with expectations based on existing research.4

Increased scores for resistance to change, a measure not used to predict adherence to mobile health interventions for cancer patients before, turned out to be an unexpected third predictor for participants who continuously used the app.4 Investigators concluded based on this and other studies that while initiating a new behavior may be negatively impacted by a resistance to change, once a patient decides to embark on a new routine, it may positively impact adherence.4

The fourth and also unexpected predictor of adherence to continuous use of the self-care app was higher depressive scores since they are most often associated with lower levels of motivation and activity.4 While another study involving a mindfulness-based yoga program and one for adjuvant cancer therapies both found depressive symptoms negatively impacted participation, a study using a web-based program to manage illness was effective with breast cancer patients experiencing high levels of depression.4 Researchers for this study concluded that mobile health-based interventions for mindfulness and relaxation appear to be a good match with patients reporting higher depressive symptoms.4 Qualitative evaluation of the app was conducted via patient interviews.4 Feedback was mostly positive with simplicity and ease of use ranking high.4

Investigators recommend future research on effectiveness as well as dose-response relationships between time engaged with the app and health outcomes in order to provide additional evidence regarding the importance of mindfulness and relaxation mobile health protocols for cancer patients.4



1 The Future of Patient Engagement in the Oncology Setting: How Practical Patient Engagement Recommendations and Innovative Inter-Professional Education Can Drive Change. Society for Participatory Medicine. Accessed 4/2/2019

2 HealthLoop: Patients Using Digital Interactive Platform Show 45% Increase In Comprehension of Diagnostic Imaging. HealthLoop Accessed 4/2/2019 AND

3 Mobile Health Intervention to Increase Oral Cancer Therapy Adherence in Patients With Chronic Myeloid Leukemia (The REMIND System): Clinical Feasibility and Acceptability Assessment. JMIR Mhealth Uhealth Accessed 4/2/2019

4 Adherence to a Mindfulness and Relaxation Self-Care App for Cancer Patients: Mixed-Methods Feasibility Study. JMIR Mhealth Uhealth Accessed 4/2/2019