Advances in biomedical science have radically changed the opportunities for individuals with chronic conditions to live their life, practice skillful self-care and to co-produce healthcare and research outside hospital settings. Patients can be the locus of control of their disease and personal health information.
In the case of serious, uncommon, illness -- so called rare diseases -- generating and applying new technology and knowledge requires networks of institutions. The Institute of Medicine has promoted the concept of the learning health system in which clinical care and research are integrated as a way to arrange such networks.
Upstream Dream was founded in 2014 on the patients' world vision developed by Sonia, a then 10-year-old girl living with cystic fibrosis.
Our co-production technologies
Upstream Dream empowers the patient through sustainable information sharing practices that strengthen the natural partnership and trustful sharing between persons living with diagnosis, families and healthcare professionals to promote health and wellbeing and to conserve mutual respect, honesty, collaboration, equality and ethics.
Our digital technologies enable patients to co-produce care and perform tasks traditionally carried out by healthcare professionals in a more convenient way, at lower costs, and without compromising quality. They form a natural part of any registry-based learning health system within rare diseases.
The Genia App and its cloud-based database can be used by the patient and family for data gathering and analytics by launching functionality that is unlocked in the existing app (KITS, Key Interaction Toggle System) for different purposes, use cases, patient groups, clinical settings and diagnosis areas. KITS and specific information resources are developed to support self-care, healthcare co-production and quality improvement and research.
Key interaction area description
Observations in daily living
Scheduled self-reflections (e.g. weekly, bi-weekly, monthly) with validated questions on functional health and self care activities. Eg overall health, food diary.
Notes as necessary around health / wellbeing and self-care activities including taking medications and tracking symptoms.
Treatment follow-up features include treatment purpose, start-stop dates, reminders, perceived health benefit and treatment purpose. Eg. antibiotics follow-up and modulator kits.
Reporting to healthcare
Reports are co-designed for specific purposes (e.g. pre-visit planning, research questionnaires and QoL-tools). Reports collect observations in daily living and treatment follow-up that the user has chosen to share and are exported by users to clinical microsystems and third parties according to agreed workflows and information sharing agreements.
In app newsfeeds allow for clinical teams and researchers to communicate with patients on group level. The chat function allows for families to provide feed-back and insights within the private network.
Patient generated health data resources are made available by our users to clinics, research and other collaboration partners through the the personal analytics environment and the user-controlled personal health information exchange (PHIE). The PHIE is pivotal to enable patients, healthcare professionals, healthcare funders, researchers, authorities and life science companies to co-produce high quality care and to introduce and follow up novel health technologies. Our model also safeguards that the technical and legal structures are in place to protect the integrity and self-determination of patients. Seven property rights have been iteratively refined as the foundation for personal data privacy and control, all building on the work on knowledge commons by Ostrom et al.
How the right is safeguarded
Two defined user roles have access to the Genia app and the cloud based database: Patient (individuals living with diagnosis), Member (the innermost network of trusted persons as defined by the patient).
Patient and Member users have the right to contribute with data to the patient database they have access to.
Patient and Member users have the right to extract data. Extraction is supported by functionalities in the Genia App: the user first selects the data items to extract and generates a report that can be shared through export. All extractions are logged.
Patient and Member users have the right to remove data from the database they have access to.
The right to regulate general use patterns and make changes to the app and the database is retained by the information service provider, Upstream Dream. Patient and Member users can personalize their individual patient account and activate available feature bundles using the Key Interaction Toggle System.
Patient users determine who has the right to access, contribute, extract and remove data and how these rights may be transferred to Member users. Certain exclusion rights have been transferred to the information service provider under the user agreement, for example limiting the use of the facility to its private, non-professional nature to ensure the applicability of legislation protecting the freedom of the domestic domain and to comply with medical device and consumer protection regulations.
Alienation rights to the Genia app and cloud based database (i.e. application and servers, not the data) have been retained by the service provider, i.e., the right to sell or lease management/participation rights. The Patient user has alienation rights to their data, i.e., to sell or lease extraction and exclusion rights and how those rights may be transferred.
With a project based approach Upstream Dream engages in learning networks that work towards common goals. As information service providers, we make available patient-controlled information resources building on the KITS in the Genia app and the personal health information exchange. Interoperability is safeguarded through co-design, network organization, legal frameworks on knowledge commons and semantically by the application of standards such as FHIR, validated QoL-tools and the structure of third party databases such as those of specialty pharmacy.
The members of the collaborative learning networks may represent individuals (e.g., a patient) or institutions (e.g., a hospital, professional association, authority or industry actor). Networks that include stakeholders with varying expertise and experience provides distinct advantages, not least of which is the ability to gather and share lessons in real time, contributing to the generation of intellectual and social capital. Below are examples of stakeholders/opportunities and examples of information resource purposes in analytics environments.
Data resource purposes
Patients and families
Reflect and share information in shared decision making and self-management to achieve best possible outcomes and lessen the illness burden.
Improve assessment and treatment planning based on tracking outcomes in relation to interventions, and timely performance data to aid ongoing professional development.
Improve ability to conduct research on typical patients and typical clinical practices, as well as pooling data on infrequently occurring conditions/sub-populations.
Improve transparency of comparative performance data to show results of care for populations served by different providers and decrease geographic variations in quality.
Having ready access to relevant comparative data and best practices to adapt and enable systematic shared testing with adequate sample sizes.
Research and development
As mentioned, our main experience comes from the context of rheumatology and cystic fibrosis (CF). Upstream Dream builds on 20+ years of research and development within patient-controlled information flows and registry-based learning health systems at Karolinska Institutet, Sweden (often in collaboration with The Dartmouth Institute, US).
Our co-production technologies are currently (Nov 2020) within a pilot evaluation and research phase at University of Alabama at Birmingham to adapt the system to the US context (Technology-enabled Patient Support System for Self-management of CF: https://clinicaltrials.gov/ct2/show/NCT03910881).
Selected reference papers:
de Monestrol I, Ericson P, Hjelte L, Mostrom J, Hager A, Lindblad S. Co-creating the Swedish example for orderly introduction and follow-up of new therapies. WILEY 111 RIVER ST, HOBOKEN 07030-5774, NJ USA; 2018. p. 379–379.
Longacre M, Grande S, Hager A, Montan M, Bergquist RP, Martensson M, et al. Clinical Adoption of mHealth Technology to Support Pediatric Cystic Fibrosis Care in Sweden: Qualitative Case Study. JMIR Pediatr Parent 2018 Dec 10;1(2):e11080–9. PMID: 31518297
Grande SW, Longacre MR, Palmblad K, Montan MV, Berquist RP, Hager A, et al. Empowering Young People Living With Juvenile Idiopathic Arthritis to Better Communicate With Families and Care Teams: Content Analysis of Semistructured Interviews. 2019;7(2):e10401.
Lindblad S, Ernestam S, Van Citters AD, Lind C, Morgan TS, Nelson EC. Creating a culture of health: evolving healthcare systems and patient engagement. QJM 2017 Mar 1;110(3):125–129. PMID: 27803364
Thiele Schwarz Von U. Co-care: Producing better health outcome through interactions between patients, care providers and information and communication technology. Health Serv Manage Res 2016 May 16;29(1-2):10–15Sundeson K. Collaboration in care, Design of a mobile health platform to support care management of cystic fibrosis [Master Thesis]. [Helsinki]; 2014. p. 1–120.
Hvitfeldt H, Carli C, Nelson EC, Mortenson DM, Ruppert BA, Lindblad S. Feed forward systems for patient participation and provider support: adoption results from the original US context to Sweden and beyond. Qual Manag Health Care 2009 Oct;18(4):247–256. PMID: 19851232
Nelson EC, Dixon-Woods M, Batalden PB, Homa K, Van Citters AD, Morgan TS, et al. Patient focused registries can improve health, care, and science. BMJ 2016 Jul 1;354:i3319. PMID: 27370543
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Our headquarters in the US are in Reno, Nevada. Don't hesitate to contact us with any questions or queries you might have.