13th MVF Conference “With PROM and PREM to Patient-Centered Care” (December 9, 2024)
10.09.2024 14:51
The 13th MVF Conference, "With PROM and PREM to Patient-Centered Care," took place on December 9, 2024, in the Alliance Room of AOK Nordost in Berlin. Thanks to the support of our advisory boards, we are able to make all content available open access and absolutely free of charge. Thank you very much for this. If you would like to support us financially, we would be grateful. Even a small donation helps offset the rising production costs.
Managers and those responsible
- Self-help / patient associations
- Health insurance (GKV / PKV)
- Institutions of self-government
- Patient representatives
- Doctors and pharmacists
- Health Professions
- Supply manager
- Federal and state politics
- Pharmaceutical and medical technology companies
- Service providers and consultants
Greetings from the editor
Ladies and Gentlemen
Dear Colleagues,
In Germany, the current use of Patient-Reported Outcome Measures (PROM) and Patient-Reported Experience Measures (PREM) is, to put it optimistically, in need of significant improvement compared to other European countries. We are still at a very early stage of adoption. The application of these instruments is fragmented and uncoordinated (1).
We have considerable catching up to do when it comes to patient orientation. The German healthcare system lacks a comprehensive and systematic implementation that could both contribute to more patient-centered outcomes (2) and create more realistic evidence-based endpoints in "special treatment situations."
The 13th “Monitor Healthcare Research” conference is therefore dedicated to this topic under the title “With PROM and PREM to Patient Centered Care.”
In contrast to our European neighbors, Germany and Austria have traditionally been very reluctant to apply these methods. 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 even being integrated into the pay-for-performance program for hospitals, and Sweden and the Netherlands have established national standards or registries for PROM.
Why are Germany and Austria lagging so far in this regard? Why have we only had sporadic projects and pilot applications so far? These questions are complex and not easily answered. They require a critical analysis and an identification of the systemic and structural barriers to implementation, as well as a detailed evaluation of the potential of PROM and PREM for patient-centered care management.
We want to tackle this together on December 9, 2024, in the Alliance Room at AOK Nordost in Berlin. The conference is intended as a starting point for a potential rethink and paradigm shift! Join us and get actively involved! Early registration is recommended: The Alliance Room is designed for 60 participants.
Prof. Dr. Bertram Häussler, head of the IGES Group, will chair the congress together with me.
Your Prof. Dr. Reinhold Roski,
Publisher “Monitor Health Services Research”
Literature:
1: https://t1p.de/1gpkp
2: https://t1p.de/m30ar
3: https://t1p.de/eja8s
4: https://t1p.de/bhyll
Contact
For all questions about the congress, please contact Anke Heiser
- per email to [email protected] or
- by phone at 0228 – 76368033
Speakers & Lectures
Here you will find the speakers (in alphabetical order) of the MVF conference "With PROM and PREM to Patient-Centered Care," which will take place on December 9, 2024, in the Alliance Room of AOK Nordost (Wilhemstrasse 1, 10963 Berlin). The presentations and their audio recordings are available open access to all interested parties. We would, of course, be delighted to welcome any new subscribers who show that our work is valued. You can read the documentation of the event in the MVF issues (01 and 02/25).
Congress Chair
Prof. Dr. Reinhold Roski, MVF editor
and
Prof. Dr. Bertram Häussler, Director of the IGES Institute
Keynote speaker
Daniela Teichert, Chairwoman of the Board of AOK Nordost
Keynote 1: With PROM and PREM to Patient Centered Care
Keynote speaker
Olaf Meyer, Senior Advisor Health at the Royal Danish Embassy
Keynote 2: How PROM/PREM is used in Denmark to manage healthcare for the benefit of all
- Organisation of national PRO work with broad representation of the healthcare system and patients
- The concept of involving users (clinicians and patients) in the development and testing of national programs
- The concept of PRO in daily practice and the subsequent possibility of using PRO data for quality development
- What patients and clinicians say
- Status of national PRO work
Speakers
Marion Grote-Westrick, Bertelsmann Foundation, Senior Project Manager, Health Program
Dr. Matthias Arnold, Member of the Management Board of inav
How PROMs and PREMs can help achieve patient-centered care
In the past, the quality of healthcare was primarily measured using clinical parameters. In recent years, however, these have increasingly been supplemented by patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs). By managing care using PROMs and PREMs, a timely medical response can be initiated. This allows disease monitoring and therapy management to be rethought and planned. These are particularly important in oncology because both the cancer itself and the therapies are associated with significant symptoms and impairments in quality of life. Using oncology care as an example, we will discuss the advantages and challenges of managing care using PROMs and PREMs. Using selected international examples, we will demonstrate how solution approaches are being implemented in a structured manner in other countries and what experiences have been gained with them.
Speaker
Prof. Dr. Oliver Gröne, Deputy Chairman of the Board of OptiMedis
Experiences with the collection of PROM and PREM data in the OECD PaRIS Survey in 20 countries
The OECD's PaRIS study aims to assess the performance of health systems—similar to the PISA study in education. For this purpose, PROMS and PREMS were collected from people over 45 who had used primary care in the last six months. In addition, linked data from primary care practices were collected to analyze how their practice organization and care processes impact patient experiences and outcomes.
OptiMedis, together with partners Nivel, the University of Exeter, the Avedis Donabedian Institute Barcelona, and Ipsos Mori of the OECD, developed the methodology for the PaRIS study and implemented the initial data collection. This phase, in which 20 countries participated, was successfully completed in 2024. A total of 1,810 general practices and 114,580 patients participated.
The results of this international health system comparison will be presented for the first time in the OECD Flagship Report in February 2025. It will explain the background, the conceptual model, the data collection strategies and instruments, and results from initial publications.
Speaker
Carolin Kamann, Strategic Business Development Raylytic
PROM/PREM: Experiences from Switzerland – Practical example from the Cantonal Hospital Winterthur
In Switzerland, various national and cantonal initiatives and pilot projects promote the application and further development of PROMs and PREMs. In mid-2019, the Zurich Health Directorate began mandatory measurement of indication and outcome quality in patients undergoing hip and knee replacement surgery for the 21 listed hospitals in the Canton of Zurich. This presentation will explain the content-related and technical hurdles that exist for the implementation of PROMs in clinical routine and the extent to which automated solutions enable the practical implementation of PROM surveys on a large scale without additional personnel costs. Using the example of the Winterthur Cantonal Hospital, which conducts approximately 120,000 surveys annually, it will be demonstrated to what extent both legal requirements can be met and instruments can be used to improve indication and treatment quality within the hospital.
Speaker
Dr. Christoph Pross,
Senior Research Fellow, Project Outcome Transparency in Hospitals and PROMoting Quality, TU Berlin
PROMs and PREMs for implementing value-based healthcare in Germany. Where are we now, and what should we do now?
The concept of Value-Based Healthcare (VBHC) places the health benefits for patients at the center of healthcare. This approach is gaining increasing importance in Germany, but what steps are necessary to realize the potential of Patient Reported Outcome Measurement (PROMs) for implementing VBHC? Two reports from the Bertelsmann Foundation provide insights into this. They analyze the status and success criteria for the introduction of PROMs and show how other countries are progressing with their implementation.
The topic is also being explored in depth by two Innovation Fund projects at TU Berlin. The completed PROMoting Quality project used electronic PROMs in the field of endoprosthetics for digital remote patient monitoring. The results indicate that PROM-based remote monitoring can improve patient-relevant outcomes and simultaneously lead to cost reduction in the year following the inpatient procedure. Another project, PROMchronic, is currently exploring how PROMs can be used in the care of people with chronic illnesses.
The approaches and findings presented offer an exciting perspective on how healthcare can be made more patient-centered and value-oriented.
Speaker
Melina Sophie Kurte, Senior Manager VITIS Healthcare
Speaker
Cordula Mühr MD MPH, Volunteer Patient Representative at the G-BA
PROM and PREM for supply management in Germany?
Instead of systematically thinking about and designing the health care system from the perspective of patients – whose care is ultimately its purpose and justification for financing by insured persons/patients – particular interests dominate health policy decisions in Germany along legislative periods, sectoral boundaries, and corporatist self-administration. [1]
The conservative German healthcare system is hierarchically organized and its mindset remains largely dominated by doctors and men. This is rather counterproductive to patient-centered care management, despite the often-held narrative that "the patient is the focus“ stand. [2]
What must/can be done to break this increasingly obvious ineffective and inefficient approach? At the macro level of health policy, patients and their government-appointed representatives—unlike other stakeholders—currently have a sufficiently strong lobby neither in the relevant ministry nor in the self-governing bodies. [3][4]
And this despite the fact that in 1996 the Conference of Health Ministers of the 40 states of the Council of Europe had already adopted a “trilateral social pact between patients, service providers and payers" which should strengthen the political and social dialogue between these partners in order to “the same opportunities to mobilize public opinionThe participatory negotiation process for this agreement should renew interest in democratic procedures and increase trust in democracy (sic!), as well as lead to an awareness of participation and responsibility. [5]
However, the overly complex German healthcare system, with its multiple, individually granted rights to shape healthcare, makes it almost impossible for citizens to hold those shaping the healthcare system accountable at least every four years at the ballot box.
The “Seventh statement and recommendation of the Government Commission for modern and needs-based hospital care, further development of quality assurance, quality and clinical risk management" with regard to the further development of patient-centeredness at least at the micro- and meso-level. [6] In addition to increased quality transparency and the introduction of tools to support shared decision making (SDM), PREM and PROM should be implemented with a significant steering function. These proposals will be presented.
However, implementation of the recommendations was not in sight even before the collapse of the traffic light coalition.
[1] Piwernetz, K., Neugebauer, E.: “Healthcare system: Ways out of the dead end: Can they or do they not want to?”, in “Monitor Versorgungsforschung” (04/24), pp. 36-41. http://doi.org/10.24945/MVF.04.24.1866-0533.2640
[4] https://patientenvertretung.g-ba.de/media/dokumente/23-07-21_forderungen_der_patv_zum_gvsg.pdf
[5] GMK-Council of Europe. 1996. Social Challenges to Health: Equity and Patients' Rights in the Context of Health Reforms, Fifth Conference of European Ministers of Health, Warsaw, November 7–8, 1996, Final Text. Translation from: Kranich, Christoph and Jan Böcken (eds.). 1997. Patient rights and patient support in Europe. Appendix. Baden-Baden: Nomos.
Speaker
Dr. Andrej Rasch, Benefit Assessment/HTA Coordination vfa
How do we achieve a situationally adapted approach to endpoints in special therapy situations?
Scientific progress is increasingly enabling new therapeutic approaches for narrowly defined patient groups with inadequate treatment alternatives or early stages of disease. Such special therapeutic situations pose a number of challenges for evidence generation, both in the conduct of randomized trials and in the assessment of treatment effects. This requires a situationally appropriate approach to the best available evidence, including when no conclusions can yet be drawn on specific patient-relevant endpoints, the incidence of a disease is low, validated PRO instruments are not available, or a permitted change in treatment is ethically unavoidable.
Speaker
Attorney Dr. Dr. Thomas Ruppel, law firm for medical and health law
Possibilities and limitations of the use of PROMS/PREMS in health insurance law
Possible future applications of PROMs and PREMs are discussed, especially in outpatient care, an area in which they have not yet played a role. Ruppel also highlights the limitations of their use, particularly in light of the anonymity of the evaluations and the requirements for legal protection.
Speaker
Ulrike Seay, Drug Assessment Department, IQWiG
PRO surveys within the framework of application-accompanying data collection (AbD)
Patient-reported endpoints (PROs) are regularly used to evaluate treatment effects in the benefit assessment of medicinal products according to the German Act on Drugs and Medical Devices (AMNOG). The Federal Joint Committee (G-BA) also requires PRO results for the use-related data collection (AbD). The usability of PRO data for the benefit assessment requires an adequate study design and high data quality. In addition, more stringent data requirements must be met for the AbD. Initial ongoing AbDs demonstrate how this can be achieved.