13th MVF Congress on December 9, 2024, in the Alliance Room of AOK Nordost in Berlin
With PROM and PREM to Patient Centered Care
In Germany, the current state of use of Patient-Reported Outcome Measures (PROM) and Patient-Reported Experience Measures (PREM) has room for improvement. Currently, the application of these instruments in this country remains fragmented and uncoordinated (1). The reason: there is a lack of comprehensive and systematic implementation that could contribute to a stronger outcome orientation in the German healthcare system at the meta-level (2) or, at the system level, would be capable of generating more realistic and evidence-based endpoints, for example, in "special treatment situations." The 13th Monitor Gesundheitsforschung conference is dedicated to this topic under the title "Using PROM and PREM to Patient-Centered Care": A starting point for a potential rethink.
>> In contrast to our European neighbors, the use of PROM and PREM has so far been rather reserved in Germany and Austria. In countries such as Denmark, the Netherlands, and Switzerland, the integration of patient-reported outcomes (PRO) is already firmly anchored in health policy strategies (3). The United Kingdom has been systematically collecting patient-reported outcome measures (PROM) as quality indicators since 2009 (4). In Belgium, patient-reported experience measures (PREM) are being integrated into the pay-for-performance program for hospitals, while Sweden and the Netherlands have established national standards and registries for PROM. And in Switzerland – explained Carolin Kamann, Strategic Business Development Raylytic and MVF congress speaker on December 9th in her presentation – there is a committee established specifically for this purpose in 2021, the Federal Quality Commission (EQK), which is dedicated to quality development in medical service provision. Between 2022 and 2024, the EQK has been commissioned to evaluate the evaluation and use of PROM and PREM in various settings, as well as with regard to data protection issues, and to evaluate patient benefits and their impact on quality development. Kamann: "Since 2023, it has set itself the goal of maintaining uniform and (also internationally) comparable indicator sets. Various pilot projects for the implementation of patient-reported outcome measures in Switzerland are serving this purpose." For example, the ANQ (National Association for Quality Development in Hospitals and Clinics) has been commissioned to implement pilot projects such as the National Rehabilitation Measurement Plan or the ANQ quality measurements in acute hospitals.
To advance the development of outcome quality measurement in Switzerland, the EQK also decided to test the feasibility of various indicators and subsequently submit recommendations to the Swiss Federal Office of Public Health (FOPH). It issued a contract for a pilot project on patient-reported outcome measures, which would pilot the survey in terms of content, organization, and technology. Following the public tender, the EQK awarded the pilot project for the cross-sectoral implementation of PROM ("Open PROMs") to a consortium of the Bern University of Applied Sciences, Brightfish B.V., MIDATA Cooperative, and the Insel Gruppe in 2023 (5). Duration: July 1, 2023, to July 31, 2025. According to Kamann, various cantons have now implemented their own guidelines and programs for collecting PROM and PREM, often in collaboration with academic institutions and healthcare facilities. In mid-2019, the Zurich Health Directorate began a mandatory measurement of indication and outcome quality for patients undergoing hip and knee replacement surgery for the 21 listed hospitals in the Canton of Zurich.
In the Netherlands, too, there is an increased focus on patient-centered and quality-oriented healthcare. This is described by Dr. Valerie Kirchberger, who led the "Feasibility Study on Cross-Indication Patient-Reported Outcome Measurement – Leveraging Digitalization for Patient-Centered Healthcare (DigiPROM)" in her final report (7). In 2017, the development of patient-centered health indicators, quality-based reimbursement, and shared decision-making were enshrined in the Dutch coalition agreement, following which the Ministry of Health, Well-being, and Sport (Ministerie van Volksgezondheid, Welzijn en Sport) presented the concept "Outcome-based healthcare 2018–2022" for the gradual implementation of PROM. The stated goal: to collect PROs for all diseases that together account for at least 50% of the disease burden in curative healthcare by 2022. Funding has been approved, and the National Institute of Health has been commissioned to implement the concept together with patient representatives, service providers, insurance companies, as well as representatives from academia and international consortia. According to DigiPROM, four key points have been defined:
1) Updating existing and developing new guidelines and measurement instruments, as well as adapting international standards for the PRO survey.
2) Promoting participatory/collaborative decision-making between providers and patients.
3) Healthcare contracting and the organization of cross-sectoral healthcare should be based on PRO data.
4) The care-integrated use of PRO for patients and service providers, as well as the provision of aggregated data for insurance companies and science.
The implementation of the concept will also be accompanied by an evaluation process, on the basis of which any adjustments can be decided at the policy level in order to best promote implementation.
The example of Denmark, which uses PROM and PREM to manage its healthcare system and thus plays a pioneering role, shows that the systematic use of both instruments
ments has great potential to improve the quality of healthcare and place much greater emphasis on the patient perspective.
In his keynote speech at the MVF Congress, Olaf Mayer, Senior Advisor Health at the Royal Danish Embassy, will discuss how our northern neighbors manage healthcare for the benefit of all using PROM and PREM. This requires, above all, appropriate national legislation to promote and encourage PROM/PREM. Danish healthcare policy, for example, already did this in 2005 with the Danish Health Quality Program (6). In the mid-2010s, Denmark's national healthcare agenda built on this by prioritizing PROM: Several quality programs and initiatives were introduced during this time to implement value-oriented healthcare (based on Michael E. Porter's "Value-based Healthcare"), with the core goal of more clearly promoting patient-centeredness and sustainable resource allocation in the healthcare system.
These EU states are thus fully in line with the OECD's 2019 guideline: "A people-centered health system needs to measure what matters to patients."(8) Or, in German: "A patient-centered health system must measure what matters to patients."
However, according to the OECD, few health systems assess their impact on health and well-being from the perspective of the people they are meant to serve. Although the concept of health-related quality of life (QoL) has existed for almost three decades, the OECD believes it is not systematically measured or reported. The aforementioned report, "Health at a Glance 2019," goes on to state that performance indicators in health care typically focus primarily on inputs and outputs. Outcomes such as life expectancy are important, but they do not address a range of other things that can be reported by patients, including pain, functioning, quality of life, and the experience of care itself. This means that a crucial part of the picture of health care and health system performance is missing. The OECD concludes: "People-centered health systems remain an empty promise without more information on how health care and health policy actually affect the lives of individual patients." To promote precisely this, the OECD launched the Patient-Reported Indicator Surveys (PaRIS) initiative. It aims to promote the systematic use of these key indicators in health systems (9).
Status quo Germany
The question of why only sporadic projects and pilot applications have existed so far, especially in Germany, is complex and not easily answered. The reasons are as diverse as they are numerous. Without going into detail, six obstacles can be identified:
1) lack of political will and no national strategy to introduce these instruments
2) structural challenges (fragmentation of the health system, sector boundaries)
3) financial and personnel hurdles (costs, staffing requirements and shortages, lack of reimbursement)
4) technical and infrastructural challenges (not yet fully functional IT infrastructure, data protection)
5) Standardization and coordination (interoperable technical infrastructure for seamless integration)
6) cultural and organizational factors (traditional views prevent the transition to a patient-centered perspective and the integration of PROM into existing processes and systems)
To achieve widespread implementation in this country, significant efforts and adjustments at various levels of the healthcare system are required, as has already been done in Denmark and Switzerland. This requires, first and foremost, the appropriate political will.
The Seventh Statement and Recommendation of the Government Commission for Modern and Needs-Based Hospital Care, entitled "Further Development of Quality Assurance, Quality and Clinical Risk Management (QA, QM and cRM)" (10), clearly advocates the concept of Value-Based Health Care. According to the 7th Statement, this concept postulates healthcare competition in which service providers organize themselves into networks and are rewarded for achieving particularly good health outcomes for defined patient groups at the lowest possible cost (value = health outcomes in relation to the costs of achieving these outcomes). According to the Government Commission, competition for value has consequences primarily for healthcare structures and remuneration. Certain patient groups should only be cared for in departments that have the necessary infrastructure, staff, and experience; and their remuneration should not be based solely on volume, but should take quality aspects into account based on continuous outcome measurement.
In this sense, the Commission sees the concept of performance groups, their allocation to appropriate hospital levels and remuneration based on quality and availability as important steps towards value-based healthcare.
The necessary patient orientation, as one of the dimensions in the WHO Quality Model for Health Care (11), requires, in addition to adequate measures to ensure the adequacy of health care in terms of high structural and process quality, including indication quality, also and especially the evaluation of the effects of health care using outcome indicators. According to the government commission, in addition to clinical indicators that can be captured using care-related data, "the patient perspective should be reflected much more strongly than before by measuring patient-reported outcomes (PROM) and their experiences with health care processes (PREM)." It continues: "These measurements are a valuable source of information on the WHO quality dimensions of effective, safe, people-centered, timely, equitable, and integrated health care."
Now, it's not as if nothing positive is happening in Germany regarding PROM and PREM. There are a number of innovation fund projects in the field of health services research that are investigating PROM, but these are mostly indication-specific:
• Dent@Prevent – Implementation of routine data & PROM in evidence-informed intersectoral (dental) medical care
• E=MC² – Development of intersectoral medical care for patients with chronic critical illness (using PROM, patients should be asked about their current health status)
• EPOS – Quality of outcome through Patient Reported Outcome Measures (PROM) in stroke patients in clinical routine
• PRO B – PROM in breast diseases – new approaches to the care of metastatic breast cancer
• PROMchronic – Potential of PROM and PREM to improve the care of chronically ill patients
• PRO-P – Influence of electronic patient-reported outcomes (ePROMs) in surgical treatment of prostate cancer on the postoperative course
Notable exceptions are two innovation fund projects, both initiated by Prof. Dr. Reinhard Busse from the Faculty of Economics & Management, Department of Health Care Management at the Technical University of Berlin:
• PROMchronic – Potential of PROM and PREM to improve the care of chronically ill patients (12)
• PROMoting Quality – Intersectoral use of patient-reported outcome measures to increase patient-relevant outcome quality (13)
The PROMchronic project aims to improve the care of chronically ill patients through the regular collection of digital Patient Reported Outcome Measures (PROM) and Patient Reported Experience Measures (PREM). According to the project description, this should help identify gaps in care and enable the consideration of patients' non-medical expectations. Based on their analyses, the project participants will develop concrete recommendations for action on the use of PROM and PREM. If successful, the project should contribute to improving the quality of healthcare and identifying care deficits at an early stage.
The project is funded by the Innovation Fund for 48 months with a total of approximately 1.3 million euros. Consortium partners: aQua – Institute for Applied Quality Improvement and Research in Healthcare GmbH, BARMER, and ONCARE GmbH. Duration: July 2022 to June 2025.
In the PROMoting Quality project, PROMs are used to evaluate the treatment process for hip or knee replacements from the patient's perspective. According to the project description, the evaluation is intended to show whether patients treated with PROMs are better cared for and more satisfied at the end of the study than patients in the control group. The analyses will also examine whether the intervention is more cost-effective and estimate the impact of a nationwide implementation of this new form of care. The project will receive funding for four years with a total of approximately €3.5 million. Consortium partners: HRTBT Medical Solutions GmbH, BARMER, BKK Dachverband e. V., aQua – Institute for Applied Quality Promotion and Research in Healthcare GmbH. Duration: April 2019 to March 2023. Status: The final report is being prepared.
by: MVF editor-in-chief Peter Stegmaier
Literature:
1: https://t1p.de/1gpkp
2: https://t1p.de/m30ar
3: https://t1p.de/eja8s
4: https://t1p.de/bhyll
5: https://t1p.de/cnjxm
6: https://t1p.de/mfzx3
7: https://t1p.de/lno1a
8: https://t1p.de/mx8dz
9: https://t1p.de/w9yrr1
10: https://t1p.de/w9yrr
11: https://t1p.de/zfh8t
12: https://t1p.de/pa2wz
13: https://t1p.de/eykmb
