Results from clinical research confirm Genia user benefits, ready for wider use
Clinical and Patient Outcomes
The Genia mHealth platform is currently in use in the United States and in Sweden.
Co-production
Title: Sharing Patient-Controlled Real-World Data Through the Application of the Theory of Commons: Action Research Case Study.
Conclusions: Systems can be implemented in a way so that the patient can keep control over personal health information and may grant use rights to data to other stakeholders.
Results: This case study describes the conceptual model implemented by Genia on how patient-controlled real-world data can be shared effectively in chronic care management, in a way that supports individual and population health, while respecting personal data privacy and control.
https://www.jmir.org/2021/1/e16842/
Title: Coproduction: when users define quality.
Conclusions: Coproduction can increase patient satisfaction and enable cost-effective, high-quality care. Leading examples of where coproduction opportunities have been realized exist in people who have cystic fibrosis, rheumatoid arthritis and inflammatory bowel disease.
Results: The paper high-lights examples of outcomes from coproduction using patient-reported outcomes:
Higher remission rates for children with inflammatory bowel disease.
A learning healthcare system where remission rates for children with inflammatory bowel disease increased from 55% to over 77% between 2007 and 2014.
Reduced disease activity in rheumatoid arthritis.
Patients with rheumatoid arthritis had a 50% decrease in inflammatory activity using a dashboard to track and manage symptoms.
Adult patients with cancer.
In a randomized controlled trial of patients with metastatic solid tumors, patients in the test group who reported their symptoms between visits had improved quality of life at 6 months and higher survival rates at 1 and 8 years.
https://pubmed.ncbi.nlm.nih.gov/31488570/
Title: Patient reported outcome measures in practice
Conclusions: Patient reported outcome measures (PROMs) movement has largely been driven by the agenda of researchers or service payers and has failed to focus effectively on improving the quality of care from the patient’s perspective.
Views of co-authoring patient advocates: PROM systems must be codeveloped by patients, the public, and professionals to obtain maximum value. They should be integrated with the rest of the patients’ healthcare information and patients should be able to use the information when and where they choose, including for research to benefit others with their condition.
Results: When co-developed (which is a fundamental element of the Genia model) PROM systems have the potential to enable improvement by providing information that can bridge the gap between the clinical reality and the patient world, triggering learning as well as the right next action.
https://pubmed.ncbi.nlm.nih.gov/25670183/
Cystic Fibrosis
Title: A Mobile Health Platform for Self-Management of Pediatric Cystic Fibrosis: Qualitative Study of Adaptation to Stakeholder Needs and Integration in Clinical Settings
Conclusions: The study demonstrated the importance of identifying the needs and preferences of target users and stakeholders before adopting existing mHealth solutions. All relevant perspectives, including those of clinicians, patients, and caregivers, should be thoroughly considered to meet both end users’ needs and evidence-based practice recommendations.
Results: The study describes the adaptation of the Genia mobile health (mHealth) app originally developed in Sweden to the needs of patients, families, and health care providers in a CF center in the United States and the testing of it as a platform for sharing patient-generated health data with the CF health care team.
The research strengthens the Genia model, which allows for easily implemented modifications of all functionalities of the mHealth platform, including tracking of symptoms, treatments, and activities of daily care; creating and organizing medication lists and setting up reminders; generating reports for the health care team; language and presentation; sharing and privacy; and settings and accounts.
https://formative.jmir.org/2021/1/e19413
Title: Clinical Adoption of mHealth Technology to Support Pediatric Cystic Fibrosis Care in Sweden: Qualitative Case Study
Conclusions: The case study emphasizes four core themes that characterized successful clinical integration of Genia in a Swedish CF clinic:
- cultural readiness to use mHealth;
- use of weekly huddles to foster momentum and rapid iteration;
- engagement in incremental “Genia Talk” to motivate patient adoption;
- and co-design approach toward pediatric chronic care.
Results: The study shows how important it is to include principles of quality improvement, relational co-ordination, user-centered design, and coproduction when facilitating the integration of mHealth technology such as the Genia platform into clinical care systems for pediatric CF care.
https://pediatrics.jmir.org/2018/2/e11080
Juvenile Idiopathic Arthritis
Title: Empowering Young People Living With Juvenile Idiopathic Arthritis to Better Communicate With Families and Care Teams: Content Analysis of Semistructured Interviews
Conclusions: A human-centered system design such as the Genia platform, offers JIA patients the ability to track personally relevant illness concerns and needs. The platform can also enhance communication, generate consensus-based treatment decisions, and improve efficiency and personalization of care.
When supporting continuous learning and promoting better understanding of disease management, it may reduce practice burden while increasing patient engagement and autonomy in fostering lasting treatment decisions and ultimately supporting personalized care and improving outcomes.
Results: Semi-structured interviews with young people with JIA, their parents, and care team members revealed the potential of Genia to support productive dialogue between families and care teams outside of CF care. Four main themes were identified:
(1) young people with JIA face communication challenges,
(2) normalizing illness through shared experience may improve adherence,
(3) partnership opens windows into illness experiences, and
(4) readiness to engage appears critical for clinic implementation.
