Improvement, Implementation, and Evaluation of the CMyLife Digital Care Platform: Participatory Action Research Approach.

BACKGROUND: The evaluation of a continuously evolving eHealth tool in terms of improvement and implementation in daily practice is unclear. The CMyLife digital care platform provides patient-centered care by empowering patients with chronic myeloid leukemia, with a focus on making medication compliance insightful, discussable, and optimal, and achieving optimal control of the biomarker BCR-ABL1. OBJECTIVE: The aim of this study was to investigate to what extent the participatory action research approach is suitable for the improvement and scientific evaluation of eHealth innovations in daily clinical practice (measured by user experiences) combined with the promotion of patient empowerment. METHODS: The study used iterative cycles of planning, action, and reflection, whereby participants' experiences (patients, health care providers, the CMyLife team, and app suppliers) with the platform determined next actions. Co-design workshops were the foundation of this cyclic process. Moreover, patients filled in 2 sets of questionnaires for assessing experiences with CMyLife, the actual use of the platform, and the influence of the platform after 3 and at least 6 months. Data collected during the workshops were analyzed using content analysis, which is often used for making a practical guide to action. Descriptive statistics were used to characterize the study population in terms of information related to chronic myeloid leukemia and sociodemographics, and to describe experiences with the CMyLife digital care platform and the actual use of this platform. RESULTS: The co-design workshops provided insights that contributed to the improvement, implementation, and evaluation of CMyLife and empowered patients with chronic myeloid leukemia (for example, simplification of language, and improvement of the user friendliness of functionalities). The results of the questionnaires indicated that (1) the platform improved information provision on chronic myeloid leukemia in 67% (33/49) of patients, (2) the use of the medication app improved medication compliance in 42% (16/38) of patients, (3) the use of the guideline app improved guideline adherence in 44% (11/25) of patients, and (4) the use of the platform caused patients to feel more empowered. CONCLUSIONS: A participatory action research approach is suited to scientifically evaluate digital care platforms in daily clinical practice in terms of improvement, implementation, and patient empowerment. Systematic iterative evaluation of users' needs and wishes is needed to keep care centered on patients and keep the innovation up-to-date and valuable for users.

Effectiveness of digital care platform CMyLife for patients with chronic myeloid leukemia: results of a patient-preference trial.

BACKGROUND: Two most important factors determining treatment success in chronic myeloid leukemia (CML) are adequate medication compliance and molecular monitoring albeit still being suboptimal. The CMyLife platform is an eHealth innovation, co-created with and for CML patients, aiming to improve their care, leading to an increased quality of life and the opportunity of hospital-free care. OBJECTIVE: To explore the effectiveness of CMyLife in terms of information provision, patient empowerment, medication compliance, molecular monitoring, and quality of life. METHODS: Effectiveness of CMyLife was explored using a patient-preference trial. Upon completion of the baseline questionnaire, participants actively used (intervention group) or did not actively use (questionnaire group) the CMyLife platform for at least 6 months, after which they completed the post-intervention questionnaire. Scores between the intervention group and the questionnaire group were compared with regard to the within-subject change between baseline and post-measurement using Generalized Estimating Equation models. RESULTS: At baseline, 33 patients were enrolled in the questionnaire group and 75 in the intervention group. Online health information knowledge improved significantly when actively using CMyLife and patients felt more empowered. No significant improvements were found regarding medication compliance and molecular monitoring, which were already outstanding. Self-reported effectiveness showed that patients experienced that using CMyLife improved their medication compliance and helped them to oversee their molecular monitoring. Patients using CMyLife reported more symptoms but were better able to manage these. CONCLUSIONS: Since hospital-free care has shown to be feasible in time of the COVID-19 pandemic, eHealth-based innovations such as CMyLife could be a solution to maintain the quality of care and make current oncological health care services more sustainable. TRIAL REGISTRATION: ClinicalTrials.gov NCT04595955 , 22/10/2020.

A comprehensive eHealth implementation guide constructed on a qualitative case study on barriers and facilitators of the digital care platform CMyLife.

BACKGROUND: Substantial proliferation of eHealth has enabled a move in patient-centred cancer care from the traditional in-person care model to real-time, dynamic, and technology supported on-demand care. However, in general, the uptake of these innovations is low. Studies show that eHealth is helpful in providing patient empowerment through e.g. providing high quality and timely information, enabling self-monitoring and shared decision making, but dropout rates are high and guidance for optimal implementation is lacking. AIM: To explore barriers to and facilitators for nationwide implementation and consolidation of CMyLife, a multi-component, patient-centred, digital care platform, and to construct a comprehensive implementation guide for launching digital care platforms in daily clinical practice. METHODS: The first qualitative case study of a digital care platform like CMyLife was performed including five focus group- and eighteen in-depth interviews with stakeholders. Data were collected using a semi-structured interview guide, based on the frameworks of Grol and Flottorp. Transcripts of the interviews were analysed and barriers and facilitators were identified and categorized according to the frameworks. An iterative process including participation of main stakeholders and using the CFIR-ERIC framework led to creating a comprehensive implementation guide for digital care platforms. RESULTS: In total, 45 barriers and 41 facilitators were identified. Main barriers were lack of connectivity between information technology systems, changing role for both health care providers and patients, insufficient time and resources, doubts about privacy and security of data, and insufficient digital skills of users. Main facilitators mentioned were motivating patients and health care providers by clarifying the added value of use of a digital care platform, clear business case with vision, demonstrating (cost) effectiveness, using an implementation guide, and educating patients and health care providers about how to use CMyLife. Based on these barriers and facilitators a clear and comprehensive implementation guide was developed for digital care platforms. CONCLUSION: Several barriers to and facilitators for implementation were identified, a clear overview was presented, and a unique comprehensive implementation guide was developed for launching future digital care platforms in daily clinical practice. The next step is to validate the implementation guide in other (oncological) diseases.

Filling the gaps of patient information needs and information perception in chronic myeloid leukemia with the patient-physician co-produced web-based platform CMyLife.

BACKGROUND: For patients with chronic myeloid leukemia, a web-based platform CMyLife was developed. Its aim is to enhance patient empowerment, by adequate information provision, among others. Before evaluating its effect, information provision and needs in current care were assessed. OBJECTIVE: To assess patients' evaluation of received information and information needs before CMyLife utilization and whether this information source is used correspondingly. Additionally, we explored predicting patient factors in information perception. PATIENT INVOLVEMENT: CMyLife platform was developed with active patient participation. METHODS: We conducted a cross-sectional survey among 203 CML patients before launch of the CMyLife platform, using validated questionnaires on information provision and predictive factors. We focused on website utilization during the first 3 years, using Google Analytics. Regression analyses were performed to determine influence of patient factors on information perception. RESULTS: Global perceived information provision was scored 42.8 (0-100). Information on other services such as rehabilitation and psychological support, and effects of treatment on sexuality showed room for improvement. One out of 3 knew where to find useful health information online. But more information was desired by 36% of them. Age ≥65 years, time since diagnosis and low education were positively associated with this need. Pages on medication and side effects were visited the most. DISCUSSION: To fill the gap in perceived provision and needs, information should be adjusted more to the individual in content, manner and timing. Age, time since diagnosis, and educational level are of influence in perceived information, and specific needs within these groups should be further explored. PRACTICAL VALUE: CMyLife provides reliable and up-to-date information for low eHealth literacy skilled patients concerning multiple topics indicated by patients.

Effect of Digital Care Platforms on Quality of Care for Oncological Patients and Barriers and Facilitators for Their Implementation: Systematic Review.

BACKGROUND: Oncological health care services are challenged by the increasing number of cancer survivors, long-term follow-up care, and fragmentation of care. Digital care platforms are potential tools to deliver affordable, patient-centered oncological care. Previous reviews evaluated only one feature of a digital care platform or did not evaluate the effect on enhancement of information, self-efficacy, continuity of care, or patient- and health care provider-reported experiences. Additionally, they have not focused on the barriers and facilitators for implementation of a digital care platform in oncological care. OBJECTIVE: The aim of this systematic review was to collect the best available evidence of the effect of a digital care platform on quality of care parameters such as enhancement of available information, self-efficacy, continuity of care, and patient- and health care provider-reported experiences. Additionally, barriers and facilitators for implementation of digital care platforms were analyzed. METHODS: The PubMed (Medline), Embase, CINAHL, and Cochrane Library databases were searched for the period from January 2000 to May 2020 for studies assessing the effect of a digital care platform on the predefined outcome parameters in oncological patients and studies describing barriers and facilitators for implementation. Synthesis of the results was performed qualitatively. Barriers and facilitators were categorized according to the framework of Grol and Wensing. The Mixed Methods Appraisal Tool was used for critical appraisal of the studies. RESULTS: Seventeen studies were included for final analysis, comprising 8 clinical studies on the effectiveness of the digital care platform and 13 studies describing barriers and facilitators. Usage of a digital care platform appeared to enhance the availability of information and self-efficacy. There were no data available on the effect of a digital care platform on the continuity of care. However, based on focus group interviews, digital care platforms could potentially improve continuity of care by optimizing the exchange of patient information across institutes. Patient-reported experiences such as satisfaction with the platform were considerably positive. Most barriers for implementation were identified at the professional level, such as the concern for increased workload and unattended release of medical information to patients. Most facilitators were found at the patient and innovation levels, such as improved patient-doctor communication and patient empowerment. There were few barriers and facilitators mentioned at the economic and political levels. CONCLUSIONS: The use of digital care platforms is associated with better quality of care through enhancement of availability of information and increased self-efficacy for oncological patients. The numerous facilitators identified at the patient level illustrate that patients are positive toward a digital care platform. However, despite these favorable results, robust evidence concerning the effectiveness of digital care platforms, especially from high-quality studies, is still lacking. Future studies should therefore aim to further investigate the effectiveness of digital care platforms, and the barriers and facilitators to their implementation at the economic and political levels.