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 Living with Neuroendocrine Tumors

Assessment of Quality of Life Through a Mobile Application

PURPOSE: To understand the quality of life (QoL) for patients with neuroendocrine tumors (NETs) through comparison of QoL questionnaires and symptom tracking as well as journaling via the Carcinoid NETs Health Storylines mobile application (app).

PATIENTS AND METHODS: This was a 12-week prospective, observational study of US patients with NET who were taking long-acting somatostatin analogs. National Institutes of Health Patient-Reported Outcomes Measurement Information System (PROMIS) and European Organisation for Research and Treatment of Cancer (EORTC) questionnaires were administered three times. Patients also monitored symptoms, mood, bowel movements, food, activity, and sleep, and they journaled in their app, which was coded by theme and sentiment for qualitative analysis.

RESULTS: Of the 120 patients with NET, 78% were women (mean age, 57 years); 76% had gastroenteropancreatic NETs, and 88% had metastases. Lanreotide depot and octreotide long-acting release (LAR) were used by 41% and 59%, respectively. The most common symptoms at baseline were fatigue (76.7%), diarrhea (62.5%), abdominal discomfort (64.1%), and trouble sleeping (57.5%). The majority completed five of six survey assessments (median, 5; mean, 5.1) and tracked four symptoms in the app (median, 4; mean, 5.5); the average frequency was 41.6 days for each symptom (median, 43; mean, 41.6; range, 1 to 84 days [12 weeks]). Without treatment change, most EORTC-assessed physical symptoms decreased from baseline to midpoint (eg, 59.3% at baseline v 33% at midpoint reported “quite a bit” or “very much” diarrhea; P = .002). App-based symptom tracking revealed large day-to-day variation, but weekly averages correlated well with survey scores. Journal entries showed that more patients made predominantly negative unsolicited entries about their injection experience with octreotide LAR compared with lanreotide (13 of 17 v two of 13; P , .001).

CONCLUSION: Patients with NET experience a large symptom burden that varies daily. A decrease in physical symptoms on QoL surveys suggests an effect from daily app-based monitoring or journaling, which may reduce recall bias and benefit the patient’s experience of symptoms.

Respiratory RWE during COVID-19

OBJECTIVES: Minority populations bear a disproportionate burden of the morbidity, mortality and prevalence of respiratory illness, including asthma, COPD and COVID-19. The objective of the Not One More Life, Trusted Messengers pilot program was to address health inequalities, increase access to health information and screenings for disadvantaged individuals with respiratory disease, improve long-term health outcomes among participants with asthma and COPD, and evaluate the impact of a digitally enabled program on respiratory outcomes.

METHODS: Screening events were conducted with community churches and targeted digital marketing to reach underserved communities. Eligibility was based on underlying respiratory conditions measured using "Asthma Impairment and Risk Questionnaire" and "COPD Assessment in Primary Care to Identify Undiagnosed Respiratory Disease & Exacerbation Risk" (CAPTURE) questionnaires and fractional exhaled nitric oxide (FeNO) to engage in 16 weeks of remote monitoring. Participants used the Health Storylines platform to receive virtual coaching sessions and provide data through direct entry and synced devices. The impact of the intervention on asthma outcomes and patient satisfaction was measured using changes in symptom severity from baseline, bi-weekly questionnaires, spirometry, peak flow, pulse oximetry, breath biomarkers, use of digital inhalers and digital engagement analytics.

RESULTS: The program screened over 1,200 patients and enrolled 72 participants from an eligible group of 156 patients. At the conclusion of the study, the participants demonstrated improved quality of life, improved lung function, reduced frequency of rescue inhaler use, and high participant satisfaction. In addition to free text describing their impression of the intervention, participants also reflected on the impact of the COVID-19 pandemic on health related quality of life and access to care.

CONCLUSIONS: The findings suggest that a combination of virtual coaching and digital disease management can play a needed role in the future of asthma management and research to improve symptom control, medication adherence and patient satisfaction

Prostate Cancer Patient Journey Data

OBJECTIVES: Prostate cancer is the second leading cause of cancer death in men in the United States. Digital health tools have been developed to capture the experience of patients and facilitate personalized treatment, however men are less likely to engage in consistent self-monitoring compared to women. This research evaluated the use of a mobile health app Health Storylines to capture data relevant to patient experience and treatment effectiveness among men diagnosed with prostate cancer, and the impact of collaboration with a patient advocacy partner in educating patients on the value of using the app to support their treatment journey.

METHODS: Data entered into Health Storylines by men who reported a prostate cancer diagnosis between 2015 and 2021 was retrospectively analyzed to identify engagement patterns with self-care tools. Data includes quantitative tracking and free text entries from tools designed to support patients with a variety of health conditions, including prostate cancer.

RESULTS: 95 Health Storylines users reported Prostate Cancer among their conditions, and over 90% reported having at least one additional condition. The most common comorbid conditions include High blood pressure, Type II diabetes, Atopic dermatitis, Arthritis and Depression. Over half of users (58%) were over the age of 65. The most commonly used tools were the Medication Tracker, Daily Moods, and Symptom tracker. The most commonly reported mood were Happy, Neutral and Relieved. New registrations and frequency of the use of the app both increased in fall of 2021 when Health Storylines was adopted by a prostate cancer patient advocacy association.

CONCLUSIONS: While men are typically less likely to participate in digital health interventions relative to women, collaboration with a relevant patient advocacy organization impacted access and engagement with the Health Storylines app. Customized tools to capture condition-specific data created opportunities for enhanced shared decision making between patients and their treating physicians.

Patient Experience of Schizophrenia

OBJECTIVES: There is often an assumption that remote monitoring is challenging to implement among individuals with schizophrenia, due to symptoms such as paranoia and suspicion of technology, however the promise of digital approaches for passive and real-time data collection has recently been emphasized as a result of the COVID-19 pandemic and increased need for digitally-enabled approaches to care and research. This research describes the use of a mHealth app by a self-selected population of users with Schizophrenia to assess the feasibility of using mobile apps for remote monitoring and research.

METHODS: Data from Health Storylines users between 2016-2021 who self-identified as being diagnosed with Schizophrenia is described. Data includes quantitative tracking and free text journal entries from tools designed to support the self-management of a variety of health conditions, including Schizophrenia. RESULTS: 5,012 app users reported Schizophrenia as a diagnosed condition, all of whom reported having additional comorbidities with 70% reporting two comorbid conditions. The most frequently reported comorbidities are Anxiety disorder, Depression, Bipolar Disorder and ADD/ADHD. The three most commonly used tools were the Medication Tracker, Symptom Tracker, and Daily Moods. The most commonly reported symptoms were Hallucinations, Paranoid behavior, Hearing voices, Anxiety, Depressed mood and Delusions. Among the qualitative data, several broad themes were consistently the most frequently reported across the duration of the time period examined: Psychosocial impact of the condition, Quality of life, and Experience of the condition.

CONCLUSIONS: This descriptive analysis of patient engagement with the Health Storylines app reveals that many people with Schizophrenia are willing and able to engage in mobile health technology for the purpose of selfmonitoring, engagement, and research. Further research is required to understand the degree of representation of the full spectrum of patients’ experience with Schizophrenia, and the role of patient engagement in completeness and quality of data collected using mobile health apps.

Patient-centric RWE Research

DESCRIPTION: This webinar presented by Self Care Catalysts and The Asthma & Allergy Network will share the results from their "Not One More Life" project, where they administered COVID resources and screening for at-risk minority patients in combination with RWE research on asthma outcomes in the context of a global pandemic.Learn how to solve common industry challenges of patient recruitment, engagement and remote/site-less data collection by partnering with patient advocacy groups to employ a human-centered approach to program design and execution. The benefits of longitudinal digital patient monitoring to enable the generation and collection of real world, real time data for hypothesis generation, care delivery and high-quality evidence will also be presented.

Patient Journey Data

Introducing Health Storylines for Real World Evidence

Our digital platform Health Storylines allows the patient to be a core contributor to their healthcare journey, through active and passive data collection, prospective research and patient engagement capabilities.

Prolific Patient Journey

METS Breast Cancer

Prolific Patient Journey of METS, informed by patient verbatims and electronic patient report outcomes (ePRO) collected from Health Storylines.

Our digital platform Health Storylines allows the patient to be a core contributor to their healthcare journey, through active and passive data collection, prospective research and patient engagement capabilities.

Prolific Patient Journey

Neuroendocrine Tumors

Prolific Patient Journey of NETs, informed by patient verbatims and electronic patient report outcomes (ePRO) collected from Health Storylines.

Our digital platform Health Storylines allows the patient to be a core contributor to their healthcare journey, through active and passive data collection, prospective research and patient engagement capabilities.