Picture of the panellists during the plenary panel discussion

Source © Sebastian Pfütze

A patient-centred approach to high-value care

In order to provide high-value care, the German healthcare system needs to better focus on patient value and on outcomes. Patient-reported outcome measures (PROMs) are an important tool for this, as international experts concluded at the conference “Patient-centricity and high-value care in a modern health system” in Berlin on November 22nd, 2023. In a policy paper, the PRO expert group consulting the Bertelsmann Stiftungs´s Health Programme calls for swift regulatory measures.

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Marion Grote-Westrick
Senior Project Manager
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Hannah Wehling
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Sina Busse
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Sonja Lütke-Bornefeld
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Andrea Fürchtenicht
Project Manager

Content

How do patients review their treatment? How do they assess their health during and after receiving care? In healthcare, we still prioritize the clinicians’ perspectives over the patients’ perception of their health. But there are validated instruments (Patient-Reported Outcome Measures, PROMs) to collect the patient’s perspective on symptoms, functionality, and quality of life. While the use of patient-reported data in Germany is a patchwork of individual initiatives, other countries have better aligned their healthcare structures and processes to really focus on patient value and outcomes. They systematically use PROMs to capture the patient perspective. 

At the conference in Berlin, national and international experts exchanged views on the potential of PROMs to improve the quality of healthcare. They discussed important next steps towards high-value, patient-centred care. Prof. Dr. Reinhard Busse, head of the Department of Health Care Management at the Technical University of Berlin, emphasized that a lot of PROM-initiatives are evolving dynamically in Germany. However, this dynamic is isolated and not aligned, and it is predominantly funded by the Innovation Fund of the Federal Joint Committee (G-BA), with little prospect of being transferred into routine practice.

Videos

Prioritising the patient perspective 

Pioneers from Germany and Switzerland presented their activities - from symptom monitoring with patient-reported outcomes in palliative care to public reporting by rehabilitation clinics. Portraits of nine champions as well as articles and interviews on success factors can be found in the publication "Patient-Reported Outcomes. Wie die Patientenperspektive die Versorgung transformieren wird" (in German only). 

Experts from the Netherlands, Wales, the USA, and the OECD highlighted how their countries do in patient-centred care. Systematically collecting patient-reported data, making data usable for health professionals, patients, and policymakers, enabling comparison and sharing, developing national strategies, initiating cultural change: Despite different approaches, these aspects are important building blocks in these countries on the way to more patient-centred and high-quality care.

Using PROs requires a cultural change

What can Germany learn from other countries? According to the President of the German Medical Association, Dr Klaus Reinhardt, "it's about a cultural change". There needs to be an understanding that we really want to "learn and improve". He sees great potential in the systematic use of PROs for chronically ill patients, for example in disease management programmes (DMPs). 

Ernst-Günther Carl, vice-chairman of Prostatakrebs Selbsthilfe e.V. (patient organisation for men with prostate cancer), used various projects such as the international PCO study to illustrate the important contribution that German self-help organisations have already made to the implementation of PROMs in prostate cancer care. Much effort is still needed when it comes to patient-centredness in outpatient care.  

Dr Martin Danner, Managing Director of BAG Selbsthilfe e.V. (umbrella organisation of self-help groups), would like to see an "intrinsic motivation from health professionals" to use instruments such as PROMs to obtain the patient's perspective. However, the questionnaires need to be validated, as data quality and interoperability are important prerequisites for success. Standardised surveys with both generic and disease-specific tools are "a step towards patient empowerment".

Patient-centricity: shortage of health professionals is the driving force

"Without quality transparency, there can be no patient-centricity and no outcome-centricity," says Dr Gertrud Demmler, Managing Director of the Siemens sickness fund (SBK). Recognizing the complementarity of skills in the healthcare professions could be an important driver for the necessary cultural change. With the workforce shortage in view, she said that the only way to attract young people lies in practising patient-centred care. 

Dr Jens Deerberg-Wittram called for the measurement of the patient perspective through PROMs to be included in the curricula of healthcare professions. The former president of the international organisation ICHOM, which develops international outcome measure sets, said: "It is always difficult to introduce a completely new currency into a system as closed as healthcare." It has been observed in other countries that it takes time for PROMs to be accepted as a data source. However, he described current developments in Germany as "encouraging" in this regard.

Swift regulatory action is important

Therefore, a group of experts from medicine, science, healthcare, and the Bertelsmann Stiftung is calling for patient-reported data to be intelligently linked with clinical and social data to "obtain a holistic picture of the quality of care". Dr Mani Rafii, a healthcare consultant and member of the Bertelsmann Stiftung's PRO expert group, illustrated what needs to be done in Germany to implementing PROMs, referring to the expert group’s policy paper, "Patientenperspektive priorisieren" (german only).

 

Speakers

Dr. Brigitte Mohn, Mitglied des Vorstands der Bertelsmann Stiftung am Rednerpult.

We need to collaborate across disease areas in order to define what we mean by patient-centred healthcare. The key question must be: What serves people the most?

Dr. Brigitte Mohn, Member of the Board, Bertelsmann Stiftung

Rainer Sbrzesny als Vertreter von Stefan Schwartze, Patientenbeauftragter der Bundesregierung am Rednerpult.

On the path to empowered patients, the regular view of treatment results via PROMs is an important contribution - for a better doctor-patient relationship, more health literacy and personalised care.

Rainer Sbrzesny, on behalf of Stefan Schwartze, Federal Government Commissioner for Patients

Dieses bild zeigt Prof. Dr. Ariel Dora Stern, Associate Professor of Business Administration Harvard Business School, Hasso-Plattner-Institut am Rednerpult.

Digital technology is not an ends in and of itself, but rather a means to improving patient experiences and outcomes and meeting patients where they are.

Prof. Dr. Ariel Dora Stern, Associate Professor of Business Administration Harvard Business School, Hasso-Plattner-Institut

Dr. Sally Lewis, Director Welsh Value in Health Care am Rednerpult.

Many of us are really good at building infrastructure and continue to operate it in the way we have always done. Using that infrastructure and a data driven approach to drive impact is very important.

Dr. Sally Lewis, Director Welsh Value in Health Care

Ernst-Günther Carl, stv. Vorsitzender Bundesverband Prostatakrebs Selbsthilfe e.V. bei der Diskussion auf dem Podium.

When it comes to patient-centricity, everyone claims that they practice shared decision making. However, this is not yet really the case in the field of prostate cancer, as a survey showed.

Ernst-Günther Carl, Board Member German Self-Help Group for Prostate Cancer

Prof. Dr. Reinhard Busse, Leiter Fachgebiet Management im Gesundheitswesen, TU Berlin am Rederpult.

The bigger and more serious the idea becomes, the greater the resistance. We have to realise that PROMs are not a sure-fire success that everyone agrees on.

Prof. Dr. Reinhard Busse, Head of Healthcare Management, TU Berlin

Dr. Frederico Guanais, Deputy Head of the Health Division, OECD am Rednerpult.

Having organisations that are responsible for measuring, monitoring and reporting back patient-reported outcomes and experiences is a key part for having a stronger and more people centered health system.

Dr. Frederico Guanais, Deputy Head of the Health Division, OECD

Prof. Dr. Willem Jan Bos, Professor of Nephrology Leiden University Medical Center, Linnean Initiatief am rednerpult.

What we learned: Use the data for learning and improving, use it for patient involvement, use the same data in a different way. It is very helpful to have a platform for exchange. It is a cultural change. And you need a national strategy.

Prof. Dr. Willem Jan Bos, Professor of Nephrology Leiden University Medical Center, Linnean Initiatief

Dr. Jens Deerberg-Wittram, Geschäftsführer & Medizinischer Direktor RoMed Kliniken am Rednerpult.

Wir müssen vor allem mal aus den Startlöchern kommen und anfangen. Wenn die Beteiligten besser werden, geht auch der Durchschnitt mit hoch. Der Rest funktioniert dann fast automatisch.

Dr. Jens Deerberg-Wittram, Geschäftsführer & Medizinischer Direktor RoMed Kliniken, Expertengruppe Bertelsmann Stiftung

Dr. Mani Rafii, Berater im Gesundheitswesen am Rednerpult.

The path to more patient-centricity means a cultural change. We should start pragmatically from where the interest and benefits are the greatest and where there are already structures that we can build on.

Dr. Mani Rafii, Healthcare Consultant, Bertelsmann Stiftung

Dr. Gertrud Demmler, Vorständin Siemens-Betriebskrankenkasse in der Paneldiskussion.

I warn against turning quality development systems into remuneration systems as a first step. When service providers realise what they get from a dashboard with data, they no longer ask why.

Dr. Gertrud Demmler, CEO Siemens Sickness Fund

Dr. Martin Danner, Bundesgeschäftsführer BAG Selbsthilfe auf dem Podium.

"If I request data as standard, I enter into a different dialogue with patients - and then I can also involve them differently. As we move forward with PROMs, we must ensure that they are designed in a participatory way, for example in the G-BA and in guideline commissions.

Dr. Martin Danner, CEO at the Umbrella Organisation for Self-Help Groups

Dr. Klaus Reinhardt, Präsident Bundesärztekammer bei der Diskussion auf dem Podium.

In the spirit of the Hippocratic Oath, patient-centredness should be normal for doctors. In a fast-paced world, this is often difficult. As designers in the healthcare system, we need to work on this and move away from redundancy.

Dr. Klaus Reinhardt, president German Medical Association

Experiences, Positions, Perspectives

What constitutes patient-centredness?

Dr. Frederico Guanais, Deputy Head of the Health Division, OECD

Since 2017, the Organisation for Economic Co-operation and Development (OECD) has recommended comparing healthcare systems based on patient-reported information such as PREs and PROs. The OECD believes that a regulatory framework is needed to achieve patient-centricity - which encompasses many other aspects.

The organisation formulates five dimensions of patient-centricity: Voice (citizen participation); Choice (choice and access); Co-production (participation and co-production during treatment); Integration (digitally supported, coordinated, and integrated care); Respectfulness (attentive and respectful interaction). While Germany performs well in terms of freedom of choice, according to a 2021 OECD report, it lags behind in areas such as co-production, which also includes the use of PROMs.

Statistical analyses of surveys of 10,000 patients in the OECD show that if patients perceive one or more dimensions of patient-centricity to be fulfilled, they also rate their healthcare system as high quality overall.

Presentation: Health for the People, by the People.

Wales: A link between patients, professionals, and policy makers

Dr. Sally Lewis, Welsh Value in Health Centre

PROs play an important role in Wales’s journey towards a high quality, user-centred healthcare system. The Welsh Value in Health Centre promotes the necessary cultural changes and provides the infrastructure, for instance for patient-reported data. This data is collected, collated, and visualised in dashboards for care.

Medical staff can use the PROs as a symptom tracker and for shared decision making. As aggregated data, they provide answers to a wide range of questions such as differences in quality, needs and resource allocation. Wales uses this wealth of knowledge to derive measures for care.

To promote cultural change, there are learning academies, monthly clinical webinars, conferences, and social media activities. According to Lewis, the Centre sees itself as a link between organisations, politics, and professionals.

Presentation: A focus on outcomes – value in health in Wales

Netherlands: Intertwining top-down and bottom-up approaches

Prof. Dr. Willem Jan Bos, LUMC & St. Antonius Hospital; Linnean Initiatief

In the Netherlands, all stakeholders in the healthcare sector concluded the "Integraal Zorgakkoord" (Integrated Care Agreement) at the end of 2022 to enable needs-based, high-quality healthcare while considering limited financial and dwindling human resources. The programme follows the "Uitkomstgerichte zorg" (Outcome-oriented care) programme from 2018-2022. In addition to these top-down programmes for the implementation of patient-centred care, the Linnean Initiative is an important driver for bottom-up activities.

The Linnean Initiative brings together over 1,500 members to form an independent knowledge and exchange platform for patient-centred care. It organises meetings, develops outcome sets and produces manuals for PROM implementation.

In the Santeon Clinic Group, the use of PROMs has reduced complication rates in bowel and kidney operations by around 20 percent. PRO data can be viewed by doctors in dashboards and can be used for shared decision-making.

Presentation: Outcome-based Healthcare in the Netherlands

USA: Using digital tools to advance patient-centricity

Prof. Dr. Ariel Dora Stern, Associate professor of Business Administration at Harvard Business School; Hasso-Plattner-Institute

Examples from US practice show how electronic PROMs promote patient-centricity and simultaneously saving resources in the healthcare system. These include an interdisciplinary recovery tracker developed at the PROVE Centre at Brigham and Women's Hospital in Boston, which monitors patients for ten days after surgery and discharge from hospital. It gives patients tips in the event of complaints and triggers an alarm for carers in the event of warning signals. The evaluation of 7,000 patients showed that, despite being discharged earlier than usual, there were 22 percent fewer unnecessary readmissions to the emergency department. The tracker makes it possible for patients to be discharged early. It creates more capacity for hospitals.

The Hello Heart mhealth app for chronic heart disease shows that even hard-to-reach and vulnerable target groups such as middle-aged, less digitally savvy men and 1st, 2nd or 3rd generation immigrants can be reached and benefit enormously. The key: an extremely user-friendly design, individualised tips and feedback, linkability with other data. The result: the more intensively the patients used the app, the more successfully they were able to lower their blood pressure.

Presentation: Patient-Centric Digital Care Models in the United States

Germany: A patchwork of uncontrolled PROM-implementation

Prof. Dr. Reinhard Busse, Head of the Department of Healthcare Management, TU Berlin

A standardised measurement of patient-reported data over a longer period is an important element in strengthening patient-centricity - with implications for the entire healthcare system. A major driver for the use of PROMs is currently the Innovation Fund at the Federal Joint Committee (G-BA). However, many projects do not receive a recommendation from the G-BA to be included in standard care.

The uncontrolled use of PROMs to date has led to a patchwork in Germany: although there is already a broad spectrum of indications for which PROMs are used, only relatively few patients have been surveyed to date. Standardisation is perceived to be greater than it actually is the case. There is a lack of regulatory strategy for systematic use, particularly for quality assurance and public reporting. One of the biggest hurdles: Resistance in the healthcare system to transparency.

Presentation: Patientenzentrierung in Deutschland – Status quo

Position Paper/ Policy Paper: Realising the potential of PROs

Dr. Mani Rafii, Healthcare Consultant, on behalf of the Bertelsmann Stiftung PRO Expert Group

The position paper of the seven-member PRO expert group from science, practice and the Bertelsmann Stiftung comprises five steps for improving healthcare by using patient-reported data.

  1. Develop a national strategy
  2. Define core outcomes
  3. Use PROs in the individual treatment context
  4. Regulate responsibilities and remuneration
  5. Ensure interoperability

The group believes that the opportunity for PROM implementation in Germany is currently favourable, as there is growing interest in the topic from both patients and doctors. However, time is pressing to avoid isolated solutions through regulatory measures. In addition to Dr Mani Rafii, the expert group includes Prof Dr Reinhard Busse, Dr Jens Deerberg-Wittram, Dr Ilona Köster-Steinebach, Prof Dr Matthias Rose, Uwe Schwenk, Prof Dr Ariel Stern.

Position paper "Patientenperspektive priorisieren"

Presentations

Publications (in German)

Background

Related project:

Patient-Centered Health Care