Identifying Patient-Centered Outcomes for Chronic Disease Management Using Digital Healthcare Interventions

Background: There is great interest in using technology in health care to help people with chronic diseases manage their conditions and lead healthier lives. Researchers have demonstrated the promise of using technology such as telemedicine, mobile health and computer-based decision-support in clinics, and commonly use validated scales for assessing treatment burden, shared decision making and satisfaction. However, the most relevant patient-centered outcomes and means of measurement for these interventions have not been identified.

Proposed Solution to the Problem: The project team proposes a series of multi-stakeholder convenings with a diverse group of chronic disease patients, researchers and care system stakeholders to answer these questions. A set of patient-centered outcome measures regarding burden, cost, preferences, and functioning for digital chronic disease management interventions will be identified through these convenings. The project team will also identify relevant mediators of these outcomes for digital interventions. Finally, the project team will seek to ascertain the appropriateness, acceptability and potential of analog and digital means of measuring different patient-centered outcomes around digital healthcare interventions for chronic disease management.

Objectives:

1. Identify specific patient-centered outcomes related to digital care interventions for chronic disease management.
2. Identify analog and digital means of measuring, collecting and reporting those outcomes.
3. Construct a process guide for PCOR/CER studies to define and collect these patient-centered outcomes throughout the research life cycle.

Activities: This project will include formative engagement with patients, community representatives, researchers and care system stakeholders to talk about patient experiences with digital care interventions, existing outcome measurement for digital care interventions and existing system priorities and constraints around both digital care and patient-centered outcome measurement. Those groups will then meet during three virtual convenings to discuss how this information can be used to conduct patient-centered outcomes research and comparativeness clinical effectiveness research to assess the use of technology for chronic disease management.

Projected Outcomes and Outputs:

• Short-term outcomes during the project period include a list of patient-centered outcome measures focused on digital healthcare interventions for chronic disease management. A toolkit for implementing measurement in future research will include an Executive Summary and a complementary video featuring patients and/or community members. The project team will also evaluate successes, failures and opportunities of the convenings to understand potential next steps. 
• Medium-term outcomes (0-2 years post-project period) include an increase in the integration of digital healthcare interventions for chronic disease management. The project team will also evaluate how learnings from the convenings shape subsequent work and disseminate this through a diverse group of stakeholders
• Long-term outcomes (3+ years post-project period) include further integration and evaluation of digital healthcare interventions for chronic disease management in patient-centered outcomes research. 

Patient and Stakeholder Engagement Plan: Engagement will include existing and novel organizational and individual stakeholders. As part of an environmental scan when developing the Community Advisory Council, the project team engaged with the Health Care Systems Research Network (HCSRN) and HealthPartners colleagues, among others. They will extend invitations to representatives of research stakeholders such as HCSRN, PCORnet, and the Minnesota Electronic Health Records consortium. Within HealthPartners, the project team will invite operational partners for digital health care, the Patient-Reported Outcomes Measurement Steering Committee, and other key stakeholders within the organization. Patients and advocate stakeholders may include chronic disease patients, patient co-investigators, HealthPartners opinion panels and community members and patient panel members from diabetes and Parkinson’s Disease centers. 

Project Collaborators: Researchers at HealthPartners Institute will lead this work in partnership with the HealthPartners Community Advisory Council for Research and Evaluation, which includes patients and community members of diverse backgrounds and experiences. The project leads will work with the Council to identify stakeholders to talk with and plan for the convenings.