Integrating Digital Health Care – How Can Patient Reported Outcomes Data Link Up?

Published Feb 13, 2023

This is a summary report of the forum session that was conducted during the ISPOR Europe 2022 Conference.

Moderated by Assoc.-Prof. Priv.-Doz. Dipl.-Math. oec. Dr.rer.soc.oec. Beate Jahn, Insitute of Public Health, Medical Decision Making and Health Technology Assessment, Department of Public Health, Health Services Research and Health Technology Assessment, UMIT TIROL, University of Health Sciences, Medical Informatics and Technology

In the increasingly digitalized healthcare sector, patient reported outcomes data have become easier to collect.  Due to the rapid development of digital data collection through apps, much of this data exists in silos and is not linked with administrative data, clinical trials, or economic evaluations for maximum use of generated evidence. This forum aims to discuss opportunities and challenges with evidence generation from many unstructured data sources and lessons learned on how digital transformation may enhance importance of PROs in the decision making in the healthcare settings from a European perspective.

The Austrian PRÖMs project aims to link point-of-care PROMs with administrative data for use in everyday health care decision making at a patient, provider, and system level. The EUROSTARS 2 RB4.0 project focuses on combining patient level app data, registry data, clinical trials and secondary claims data to improve the care of rheumatoid arthritis patients. The PECUNIA PROM-MH Compendium out of the European H2020 PECUNIA project describes to what extent it is possible to harmonize cost and outcome assessment methods and tools across Europe. This outcome tool provides an overview of the relevant PROMs and their linked meta-data in mental health for the purpose of choosing a suitable instrument for mental health economic evaluations.  Finally, how the integration of in-app data collection linked to external primary care data could change economic evaluations for HTA will be explored drawing on lessons from the CODI project on evaluations of digital mental health interventions. 


Patient Reported Outcomes and Experience Measures as the Basis for Health Data and Digitalizing the Patient

Noemi Kiss, MSc, Lead Statistician and Health Economist, Competence Center for Integrated Care, Austrian Public Health Insurance (ÖGK), Vienna, Austria

We have digitalized many components of the healthcare system including medical records, diabetes care, prescriptions, consultations, patient portals, reimbursement systems, chronic heart insufficiency monitoring, and other services.  As we strive towards an efficient, linked digital system, the most important part is often forgotten- to digitalize the patient!  Patient reported outcomes and experience measures can be a tool not only to improve quality and efficiency of services, but as a base on which to build and link digitalized services. 

In Austria, where 99% of the population is covered by social insurance, the Competence Center for Integrated Care is cooperating with the Vienna University of Economics to digitalize the patient through patient reported outcomes and experience measures to provide a basis for the rest of the digital health environment.  The project, “PRÖMs (PROEMs)” aims to create a standardized Patient Reported Outcomes and Experience Measures Instrument which can be used to augment observational data in order to help the social insurance and its healthcare providers provide patient centered care with higher quality and efficiency. 

There are four work-packages to the project. The questionnaire is being developed using a parallel mixed methods approach, incorporating a systematic literature review and qualitative and quantitative information gathered from healthcare providers, patients, and other stakeholders (2022).  The questionnaire will be piloted and validated at primary care physicians’ offices (2023).  The data will be linked and doctors will get aggregated feedback on the outcomes of their patients (2024).  Finally, a strategic database infrastructure will be developed based on existing IT infrastructure (SV-App, ELGA) to allow patients to connect to health services and allow other stakeholders to make patient centered improvements in care.  The results of this project will be to digitalize the patient at the center of the healthcare system.  For patients it will be pivotal in creating a history of outcomes, a direct line to communicate needs with the healthcare system, a portal for individualized care and monitoring.  For the health system it will allow for quality and efficiency measurement and next level HTA and decision making with real world data.  For providers, it will give a new aggregate view of their patients through self-assessment benchmarking reports.  Finally, it will give a base of outcomes for researchers from academia and industry. 


The RB4.0 Project: Combining Patient Level App Data, Registry Data, Clinical Trials, and Secondary Claims Data -> Recommendation

Günther Zauner, MSc, PhD, Lead Health Service Modelling, DWH Technical Solutions/Simulation Services, Vienna, Austria

Günther presented the multisectoral, multinational, multi person pathways strategy within Eurostars 2 RB4.0 ("EUROSTARS-2 CoD 13: 114332 RB4.0 - Development of digital technology to improve quality of life in patients with Rheumatoid Arthritis") with the aim to improve the RB4.0 app: a virtual, context-aware and algorithm-driven app for RA-patients’ self-management and improved communication between patients and healthcare providers, to keep a continuous use and engagement and empower data use for better care, while increasing patients’ quality of life and decrease healthcare costs.

To keep a broad approach for identification of self-management recommendations systematic literature research is performed, and the gathered results are applied to a registry of RA patients at Medical University Vienna. This clinical registry is enhanced by claims data and observational study data of app users fort Austrian patients. The last step will be performed by using the recommendations optimized for specific patient groups within the extended registry in an RCT realized in Denmark.

The learnings of the presented work are that the methods use are powerful, but GDPR process is complex; due to the complexity it is necessary to work in an interdisciplinary team in concept development. Thinking about steps for medical products a recommender system in mobile health care apps is challenging, but worth trying out.


Fitness for Purpose‘ in the Realm of PROs: The PECUNIA PROM-MH Compendium

Judit Simon, MD (Hons) BA BSc MSc DPhil FFPH, Profession, Head of Department and Deputy Head of Center, Medical University of Vienna, Center for Public Health, Department of Health Economics, Vienna Austria

The PECUNIA PROM-MH Compendium (Program in Costing, resource use measurement and outcome valuation for Use in multisectoral National and International health economic Evaluations) is a project focused on multisectoral, multinational, multi-person economic evaluation.  Part of the project aims to improve comparable outcome assessment in mental health economic evaluations, systematically collate and synthesize existing, publicly available PROM information suitable for QoL/well-being measurement in mental health research.  A systematic literature review was conducted which identified 204 unique instruments.  The assessment criteria applied to the identified PROMs were that it had to be multi-person (availability of separate adult and child/adolescent versions and availability of a proxy-completion option), multisectoral (feasibility of assessing outcomes beyond a person’s individual health, that is, capabilities, social outcomes), multinational (availability of multiple translations), and be useable economic evaluation (availability of a preference-based value set and availability of preference based value sets in more than one country).  The study found that while there are ample options of standardized, validated PROMs, none of the existing PROMs fulfilled all six proposed criteria for MMM.  There was an increasing use of PROMs measuring capability well-being (e.g. ICECAP, OxCAP-MH), due to their fitness for measuring broader aspects than HRQoL.  Due to the methods of this study, non-standardized PROMs often found as part of digital tools were not accounted for, however, it became clear that when digitalizing standardized tools, it was important to preserve integrity, be context specific, and monitor its use through licensing process.  The next steps are to optimize PROM selection through up-to-date meta-information. 


Integrating Digital Health Care Data to Support HTA: a Case Study of Digital Mental Health Interventions

Dr. Dina Jankovic, Research Fellow, Centre for Health Economics, University of York, United Kingdom

The talk explored how integration of in-app data collection linked to primary care data could support economic evaluations for HTA, drawing on lessons from the CODI project on the evaluation of digital interventions for generalized anxiety disorder.

We highlighted the limitations of the CODI economic evaluation in absence of such data: 1) high uncertainty in the estimates of net benefit for different comparators (including heterogeneity in effectiveness in different patient populations and the impact of treatment sequencing on clinical effectiveness); 2) uncertainty in the natural disease progression over time; 3) lack of understanding of how disease-specific outcomes map onto health-related quality of life and resource use, and 4) uncertainty in the duration of treatment effect.

We proposed how in-app data collection, linked to primary care records can address these limitations, but highlighting that, to get the most of such data, we require infrastructure for information sharing outside individual studies.

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