What is Health Services Research?

Health Services Research is "a multidisciplinary research area that describes health care services and their context [...], that studies the implementation of new health care concomitantly and that evaluates the effectiveness of new health care structures and processes under routine conditions." (Pfaff, 2003, originally in German, translation carried out by DKG). Health Services Research is thus essential in further developing the care of cancer patients.

Health Services Research in certified centres

Certified cancer centres are well suited to conduct (health services) research, providing various uniform documentation standards (indicator sheet, quality indicators, clinical cancer registry) and an infrastructure that enables research (cf Inter-institutional requirement for study participation). The data collected during certification are regularly published in the annual reports. In addition to the annual reports in German and English, analyses on specific topics are published in scientific journals. Furthermore, the department of certification initiates or takes part in research projects in collaboration with universities and other partners.

Ongoing Health Services Research Projects

CARES

Every year, around 500,000 people in Germany are diagnosed with cancer. 45 percent of all cancers in men and 57 percent in women occur in working age. Of those affected, more than 20 percent perceive a need for further support regarding their professional reintegration after completing their rehabilitation. For many of those affected, this need for support remains even months after completion of rehabilitation. Cancer counselling centres can play a key role in supporting people to return to or remain in employment. The aim of "CARES: Cancer rehabilitation support by cancer counselling centres" is therefore to develop and investigate the feasibility of intensified support for the return to employment or the retention in employment of patients with a questionable reintegration prognosis by career guides in cancer counselling centres.

Involved Institutions
Forschungsstelle für Gesundheitskommunikation und Versorgungsforschung, Klinik und Poliklinik für Psychosomatische Medizin und Psychotherapie; Centrum für Integrierte Onkologie (CIO) Köln Bonn, Universitätsklinikum Bonn AöR
German Cancer Society (DKG)
Bundesarbeitsgemeinschaft für ambulante psychosoziale Krebsberatung e.V. (BAK)
Deutsche Vereinigung für Soziale Arbeit im Gesundheitswesen (DVSG)
Arbeitsgemeinschaft für Soziale Arbeit in der Onkologie der Deutschen Krebsgesellschaft (ASO)
Leben nach Krebs e.V.

Funding
Deutsche Rentenversicherung Bund

Duration
October 2021 – December 2023

Contact
Clara Breidenbach
PD Dr. Christoph Kowalski

 

DigiNet

The DigiNet project builds on the preliminary work of the national network Genomic Medicine (nNGM) Lung Cancer. In this network, harmonised and quality-assured molecular complex diagnostics, counselling and clinical information based on selective contracts in accordance with § 140a SGB V is carried out throughout Germany in selected network centres, including oncological centres of excellence. The aim of DigiNet is now to develop a digital control instrument that maps the implementation of molecularly controlled therapies over the entire course of the disease and that enables the networking of all treatment partners involved in the breadth of care with the inclusion of the patients. The project is being implemented in two model regions (West: NRW, East: Berlin and Saxony).

Involved Institutions
Uniklinik Köln
Universitätsmedizin Essen
Charité – Universitätsmedizin Berlin
Helios Klinikum Berlin-Buch
Universitätsklinikum Dresden
Berlin Insitute of Health
BARMER
AOK Rheinland/Hamburg
AOK Nordwest
Deutsche Krebsgesellschaft e. V.
Bundesverband für Niedergelassene Hämatologen und Onkologen e.V.
ZielGENau e.V.
Universität Greifswald
Universität zu Köln
FOM – Hochschule für Ökonomie und Management
WIdO – Wissenschaftliches Institut der AOK
OnkoZert GmbH

Funding
Innovationsausschuss des Gemeinsamen Bundesausschuss

Duration
1. Oktober 2021 – 30. September 2025

Website
https://diginet.nngm.de

Contact
Dr. Martin Utzig
Nora Tabea Sibert

 

DNPM – German Network for Personalised Medicine

The aim of the project is to establish Centres for Personalised Medicine at a further 13 locations nationwide and to bundle the competences in a German Network for Personalised Medicine (DNPM). In particular, the project partners will develop common standards and establish so-called "molecular tumour boards" to provide patients with the best possible individualised treatment. A joint database will serve quality assurance and provide new insights for the further development of personalised medicine. The accompanying evaluation will examine in particular whether patients benefit directly from the new standards and structures and what challenges are associated with the establishment of corresponding centres. The Certification Commission of the German Cancer Society will develop requirements for the Centres for Personalised Medicine on the basis of which they will be certified.

Involved Institutions
Among others
Charité-Universitätsmedizin Berlin
Heinrich-Heine-Universität Düsseldorf
Klinikum der Universität München
Klinikum rechts der Isar
Technische Universität Dresden
Universität Ulm
Universitätsklinikum Aachen
Universitätsklinikum Bonn
Universitätsklinikum Essen
Universitätsklinikum Frankfurt
Universitätsklinikum Freiburg
Universitätsklinikum Hamburg-Eppendorf
Universitätsklinikum Heidelberg
Universitätsklinikum Köln
Universitätsklinikum Würzburg
Universitätsmedizin der Johannes Gutenberg-Universität Mainz
Universitätsklinikum Gießen und Marburg GmbH
Universitätsklinikum Münster
Medizinische Hochschule Hannover
Universitätsklinikum Göttingen
German Cancer Society (DKG)

Funding
Innovation Committee of The Federal Joint Committee (G-BA)

Duration
August 2021 – December 2024

Contact
PD Dr. Simone Wesselmann

 

dVP_FAM

The aim of dVP_FAM is to strengthen transsectoral care. To this end, a digital care platform for people with a familial cancer risk and doctors is being developed and evaluated. The planned care platform consists of several modules that are tailored to the respective requirements of patients and doctors and are integrated into the telematics infrastructure and the electronic patient record (ePA). A cluster-randomised study, semi-structured interviews and observations of the everyday life of the platform users will be used to investigate the impact of the care platform on the quality of care.

Involved Institutions
Charité – Universitätsmedizin Berlin
TU Berlin
HU Berlin
ID Berlin GmbH
German Cancer Society (DKG)
BKK VBU

Funding
Innovation Committee of The Federal Joint Committee (G-BA)

Duration
December 2021 – November 2025

Contact
PD Dr. Christoph Kowalski

 

EDIUM

The care of patients with colorectal cancer differs considerably depending on the hospital. In the EDIUM-study ("Outcome Quality in Colorectal Cancer: Identification of Differences and Measures for Nationwide Quality Development"), patient-reported outcomes (PROs) and clinical endpoints are measured and compared between the different centres. EDIUM is a follow-up project to the PCO-study on prostate cancer (see entry on this page).

This study aims at formulating statements on the quality of care in certified colon cancer centres considering the patient's perspective and, where appropriate, at identifying any existing differences between hospitals. The results are intended to derive quality improvement measures in certified centres.

The project phase funded by the Innovation Committee of the Federal Joint Committee was successfully completed with more than 100 centres. More than 50 centres are now continuing the study by self-financing.

Involved Institutions
German Cancer Society (DKG)
OnkoZert
Deutsche ILCO e.V.
Arbeitsgemeinschaft Deutscher Darmkrebszentren e.V. (addz)
Institute of Medical Statistics and Computational Biology (IMSB) of the University of Cologne

Funding
Innovation Committee of The Federal Joint Committee (G-BA) (Until December 2021)
Since January 2022: Self-financing by study centres

Duration
July 2018 – December 2021
Since January 2022: unlimited

Publications
EDIUM Result Report 2021

See publications

 

Website
www.edium-studie.de

Contact
Clara Breidenbach
Nora Tabea Sibert
PD Dr. Christoph Kowalski

 

OncoBox Research

In Germany, a fundamental structural change in the care of people with cancer has taken place over the last ten years. Today, a large proportion of these patients are treated in the organ cancer and oncology centres certified by the DKG. This is done on the basis of recommendations of high-quality S3 guidelines that were developed in the German Guideline Program in Oncology. The data from these centres are published in annual reports to present the quality of treatment. By merging these data with those from the clinical cancer registries, there is enormous research potential, not only for classical health services research, but also for projects that allow interventions in structured health services. Furthermore, they allow analyses of so-called real world data with considerable scope. This potential can be used by establishing a database, the so-called OncoBox Research (OBR). With the OBR, data sets can be made available for research questions that combine data from the certification system with those from clinical cancer registration.

Involved Institutions
German Cancer Society (DKG)
OnkoZert

Duration
as from January 2019

Publications

see publications

Contact
PD Dr. Christoph Kowalski

 

Oncological Care of people with intellectual developmental disorders

To date, information about the care situation for people with intellectual developmental disorders and cancer in Germany is scarce. Data from international research suggest that while cancer rates for people with intellectual developmental disorders are comparable to those of the general public without such disabilities, there are relevant shortcomings in oncological care for this vulnerable group. It can be assumed that the German healthcare system is equally ill-equipped to cater to the specific needs of cancer patients with intellectual developmental disorders, as it has been described for other countries in Europe and beyond.

After the publication of an overview in cooperation with experts paper about the oncological care situation of people with intellectual developmental disorders (see publications), brochures for people with intellectual disabilities are now being developed in easy language (“Leichte Sprache”), which are intended to provide information about oncological screening examinations and oncological treatment options in language appropriate to the target group. The brochures are being developed on the basis of existing French brochures of the Oncodéfi Association and will be disseminated in places accessible to the target group, e.g. Lebenshilfe meeting points.

Involved Institutions
German Cancer Society (DKG)
Lebenshilfe e. V.
Oncodéfi Association
Deutsche Gesellschaft für Medizin für Menschen mit geistiger oder mehrfacher Behinderung (DGMGB) e. V.
Ärztekammer Nordrhein
Arbeitsgemeinschaft Soziale Arbeit in der Onkologie der DKG e. V (ASO)

Funding
Stiftung Deutsche Krebsgesellschaft (for designing and disseminating the brochures)

Duration
January – June 2022 (designing and disseminating the brochures)

Publications
see publications

Contact
Christoph Kowalski

 

OPTIMA

"Optimal treatment for patients with solid tumours in Europe through Artificial intelligence" - the aim of OPTIMA is to establish federated and centralised access to a variety of European health care datasets to help answer the important research questions in prostate, breast and lung cancer.

Additionally, comprehensive decision support tools will be developed, based on national and international guideline recommendations and statistical analysis, using artificial intelligence to support shared decision-making between physicians and patients.

Involved Institutions
More than 30 european partners, among others:
German Cancer Society (DKG)
European Association of Urology (EAU)
European Cancer Patient Coalition (ECPC)
European Respiratory Society (ERS)
Erasmus University Medical Center Rotterdam (EMC)
University College London / University College London Hospital (UCL/UCHL)
University of Oxford

Duration
October 2021 – September 2026

Website
www.optima-oncology.eu

Contact
PD Dr. Christoph Kowalski
Nora Tabea Sibert

 

PCO

The "Prostate Cancer Outcomes Study" (PCO study), funded by the Movember Foundation, aims to help improve the physical and mental health of men who are being treated for localised prostate cancer. The PCO study is a joint project of the German Prostate Cancer Self-Help Association (BPS), the German Cancer Society (DKG), OnkoZert and now over 100 participating prostate cancer centres. The PCO study has been recruiting patients in DKG-certified prostate cancer centres in Germany and Switzerland since July 2016. In the meantime, more than 30,000 patients have participated in the study. In the study, patients are surveyed by means of a standardised questionnaire (EPIC-26) on the functional outcomes "incontinence", "irritable/obstructive", "gastrointestinal", "sexuality", "hormonal" pre-therapeutically and at least once (after 12 months) post-therapeutically. The survey data will be linked to disease and treatment data available in the centres. The results are analysed in a casemix-adjusted manner for the pseudonymised comparison of centres. The PCO study is part of the TrueNTH Global Registry, in which 15 countries are now participating.

Involved Institutions
German Cancer Society (DKG)
Bundesverband Prostata Selbsthilfe (BPS)
OnkoZert
Certified prostate cancer centres

Funding
Movember Foundation (Australien)
Förderverein Hilfe bei Prostatakrebs (FHbP)

Duration
July 2016 – unlimited

Publications
PCO Result Report 2021

see publications

Website
www.pco-study.com

Contact
PD Dr. Christoph Kowalski

 

PRO-B

The aim of the PRO B study is to examine whether the positive effects of intensified Patient-Reported Outcomes monitoring can be transferred to the usual care of patients with metastatic breast carcinoma in Germany. PRO B is a prospective, multicentre, randomised two-arm intervention study. Depending on randomisation, patients are asked about their health status weekly (intervention arm) or every three months (control arm) via smartphone app or email. A deterioration of the values is indicated to the treating centre by an automatic alarm. The centre then decides whether to contact the patient to specify the deterioration in values and initiate measures if necessary. PRO B uses the existing certification structures of the participating breast cancer centres to link clinical data with the collected PROs.

Involved Institutions
Charité – Universitätsmedizin Berlin
German Cancer Society (DKG)
OnkoZert GmbH
BARMER
BKK·VBU
DAK-Gesundheit

Funding
Innovation Committee of The Federal Joint Committee (G-BA)

Duration
October 2020 – September 2023

Publications
see publications

Website
www.pro-b-projekt.de

Contact
Clara Breidenbach
PD Dr. Christoph Kowalski

 

REGIBA

The use of data available in health care and the generation of evidence through register-based studies is increasingly postulated. Best practice examples from oncology show that, in the sense of knowledge-generating health services research, guidelines can be reviewed with the help of register data, the effectiveness and quality of diagnostics and care can be evaluated and recommendations for guidelines and interventions can be made. The aim of the project is to develop a curriculum that provides (young) scientists with the necessary knowledge and methodological principles for conducting register-based studies and using health care data in registers. The content should include a basic understanding of the diversity of care and the health care system on the one hand and the possibilities and necessity of inter- and multidisciplinary evaluation and use of register data for the providers and those to be cared for on the other. Further training on the basis of the curriculum should enable participants to evaluate registry data for their validity and quality for research questions, to evaluate them in a context-appropriate, methodologically high-quality manner and to conduct sophisticated registry-based studies primarily in oncology (and possibly also in other disease areas in the future) (project description . The German Cancer Society is involved in the scientific advisory board.

Involved Institutions
Deutsches Netzwerk Versorgungsforschung (Projektleitung)
Arbeitsgemeinschaft Deutscher Tumorzentren (ADT)
Scientific advisory board, among others with representatives from the German Cancer Society (DKG)

Funding
The Federal Ministry of Health

Duration
September 2021 – August 2024

Website
www.dnvf.de

Contact
PD Dr. Christoph Kowalski
PD Dr. Simone Wesselmann

 

Training Curriculum Familial Breast and Ovarian Cancer

More than 25 percent of all patients with breast or ovarian cancer have a familial risk constellation. The aim of this project is to enable medical specialists in certified cancer centres to competently care for their patients with familial cancer, to provide clinicians with knowledge in triaging high-risk patients and interpreting genetic findings, to train them in communicating with this patient group and to strengthen the cooperative network between certified centres for familial breast and ovarian cancer (FBREK centres) and certified breast or gynaecological cancer centres. For this purpose, a blended learning training was designed, which includes an e-learning platform and job shadowing in FBREK centres.

Involved Institutions
German Cancer Sociaty (DKG)
Deutsches Konsortium Familiärer Brust- und Eierstockkrebs
Zentrum Familiärer Brust- und Eierstockkrebs Köln
Ärztekammer Westfalen-Lippe
Certified breast cancer centres, certified gynaecological cancer centres, certified centres for familial breast and ovarian cancer

Funder
The Federal Ministry of Health

Duration
July 2021 – December 2022

Website
www.krebsgesellschaft.de

Contact
Clara Breidenbach
PD Dr. Simone Wesselmann

Completed Health Services Research Projects

B-CARE

Breast cancer has an increasing incidence while, simultaneously, a declining mortality, and more and more young women in working age are affected. As a result, occupational reintegration as an essential step in returning to everyday life is becoming increasingly important. B-CARE interviews 530 former breast cancer patients in person and by post and links this information with data from the PIAT-study and routine data from the DKG-certification system. This enables, for the first time, to comprehensively map the individual experiences, preferences and decisions concerning rehabilitation and occupational reintegration of women after breast cancer. The aim of the project is to investigate socio-structural and psychosocial determinants of occupational reintegration success after breast cancer.

Involved Institutions
Forschungsstelle für Gesundheitskommunikation und Versorgungsforschung, Klinik und Poliklinik für Psychosomatische Medizin und Psychotherapie; Centrum für Integrierte Onkologie (CIO) Köln Bonn, Universitätsklinikum Bonn AöR

German Cancer Society (DKG)

Frauenselbsthilfe nach Krebs e.V.

Deutsche Vereinigung für Soziale Arbeit im Gesundheitswesen

Deutsche Rentenversicherung

Funding
Deutsche Rentenversicherung

Duration
May 2018 – December 2020

Publications

see publications

Contact
PD Dr. Christoph Kowalski
Clara Breidenbach

 

Evaluation of the StudyBox

The StudyBox is an internet-based platform for patients and physicians. It provides an overview of studies conducted in certified centres. Studies registered in the StudyBox undergo a peer-review process; they are accredited and listed in the StudyBox if they are of high quality and of particular importance for certified centres. Evaluation and accreditation of the studies is carried out by members of the Study Board who are appointed by the Certification Commission for Visceral Oncology Centres and by representatives of the ADDZ (Association of German Colorectal Cancer Centres) and the DKG.

In the pilot phase the StudyBox recognises studies at DKG-certified Colorectal Cancer Centres. Using the search function in the StudyBox, disease- and stage-specific studies can be identified. The StudyBox also shows which studies are currently recruiting patients and which are already closed. Click here for StudyBox: www.studybox.de

Involved institutions
Deutsche Krebsgesellschaft  (DKG)
OnkoZert
Arbeitsgemeinschaft deutscher Darmkrebszentren (ADDZ) − Association of German Colorectal Cancer Centers

Funding
Bundesministerium für Gesundheit (BMG) - German Ministry for Health

Duration
March 2015 to February 2017

Publications

see publications

Contact
PD Dr. Christoph Kowalski

 

N-MALE

The most common cancer in women is breast cancer. Breast cancer in men, however, is very rare. Approximately 700 men in Germany are annually diagnosed with breast cancer. Despite the increase of studies in epidemiology, diagnosis and risk factors, data on how care is provided and on the psychosocial needs of male breast cancer patients over the course of the treatment are sparse.

The aim of N-MALE (Male breast cancer: Patients' needs in prevention, diagnosis, treatment, rehabilitation and follow-up care) is the illustration of medical and psychosocial needs of male breast cancer patients. Not only the patients’, but also the health professions’  (breast cancer specialists, family physicians, nurses, rehabilitation physicians, physiotherapists, social workers and psycho-oncologists) view will be represented in the study.

The study follows a qualitative research approach. The patient perspective is illustrated based on semi-standardised qualitative interviews. The perspective of the health professions involved is detected via focus group discussions. Recruitment of patients takes place via the DKG-certified Breast Cancer Centres. Leading partner of the study is the Research Centre for Health Communication and Health Care Research of the Clinic for Psychosomatic Medicine and Psychotherapy at the University Hospital of Bonn (Prof. Dr. Nicole Ernstmann).

Study results will be made available to the participating Breast Cancer Centres and organised self-help groups via fact and prompt sheets. In addition, a national transfer workshop for Breast Cancer Centres and patients is planned.

Involved institutions
Universitätsklinikum Bonn (UKB) − University Hospital Bonn
Deutsche Krebsgesellschaft e.V. (DKG)
Netzwerk Männer mit Brustkrebs e.V. − Network Men with Breast Cancer
Ludwig-Maximilian-Universität München (LMU) − University Munich
Uniklinik Köln (UKK) − University Hospital Cologne

Funding
Deutsche Krebshilfe (DKH) − German Cancer Aid

Duration
April 2016 to April 2018

Publications

see publications

Contact
PD Dr. Christoph Kowalski

 

NWOB

Healthcare organizations (such as medical practices, hospitals) face the challenge of providing the best possible care while being economically viable. Here, the interests of very different groups of actors within and outside the organization must be taken into account (e.g. patients, employees, cooperation partners), which all may be conducive or detrimental to success. Contextual factors (e.g. country-specific legislation) additionally influence the organizations. Not all of these challenges are specific to health care organizations but often are similar or the same in other types of organizations. However, it is clear that there are major differences between health care organizations. These differences concern, for example, the staffing and equipment, the working atmosphere and, ultimately, the quality of care provided.

The aim of the network NWOB (Network on Organizational Behaviour in Healthcare) is to focus on organizational specifics of health care institutions, viz. the formal organizations, their purpose, context and environment as well as the behavior of individuals within these organizations and their impact on the success of the organizations.

The network consists of 15 scientists from various universities, research institutions and associations in Germany and has an interdisciplinary composition. It was created by the research group "Versorgungsforschung" of the German Society for Medical Sociology (DGMS).

Involved Institutions
University of Freiburg (PD Dr. Mirjam Körner, spokeswoman of the network)
German Cancer Society – Deutsche Krebsgesellschaft e.V. (Dr. Christoph Kowalski, spokesman of the network)
University of Hamburg
University of Bremen
University of Lübeck
University of Bonn
University of Cologne
Bundesanstalt für Arbeitsschutz und Arbeitsmedizin
Medizinische Hochschule Hannover
University of Oldenburg

Funding
German Research Foundation - Deutsche Forschungsgemeinschaft (DFG)

Duration
July 2014 – December 2018

Publication
see publications

Contact
PD Dr. Christoph Kowalski

 

PIAT

The aim of the PIAT study (breast cancer patients' information and training needs), which was conducted under the auspices of the Institute for Medical Sociology, Health Services Research and Rehabilitation Science (IMVR, Prof. Holger Pfaff), was the detection of the need for information and training to improve the health literacy of patients with breast cancer.

In order to elucidate this need, patients were surveyed using postal questionnaires at three time points in a prospective multicenter cohort survey. Furthermore, Breast Cancer Center representatives were surveyed to identify process and structure specifics of the organisation. Study results should suggest ways to improve the health literacy of patients and to promote the development of customised information and training for those affected.

48 Breast Cancer Centers with a total of 60 locations took part in the study nationwide. The PIAT study determined that breast cancer patients have diverse information needs and a health literacy that is "good to average". Patient trainings were hardly known and used by patients.

Involved institutions
Deutsche Krebsgesellschaft e.V. (DKG)
Institut für Medizinische Soziologie, Versorgungsforschung und Rehabilitationswissenschaft (IMVR) der Universität zu Köln − Institute of Medical Sociology, Health Services Research, and Rehabilitation Science
Frauenselbsthilfe nach Krebs − Women’s Self-Help Following Cancer
Pädagogische Hochschule Freiburg − University of Education Freiburg

Funding
Bundesministerium für Gesundheit (BMG) − German Ministry for Health

Duration
March 2012 to March 2015

Publications
see publications

Contact
PD Dr. Christoph Kowalski

 

SOBOP
Social work is an important element in the care of cancer patients and their families and friends. In the SoBoP study (social services care for oncology patients in Germany), social workers active in in- and outpatient care were surveyed to determine the specific content of their work and the amount of time spent on the care of cancer patients. Furthermore, working conditions and work-related resources were assessed.
The survey was conducted among members of the German Association for Social Work in Health Care (DVSG) that are actively involved in clinical social work. A cross-sectional online questionnaire was administered.
The study results provide an overview over work contents and job-related resources and burdens of the respondents. First results are published in the Forum Social Work + Health and can be downloaded for free here:

Involved institutions
Deutsche Vereinigung für Soziale Arbeit im Gesundheitswesen (DVSG) − German Association for Social Work in Health Care
Deutsche Krebsgesellschaft e.V. (DKG) - German Cancer Society
Institut für Medizinische Soziologie, Versorgungsforschung und Rehabilitationswissenschaft (IMVR) der Universität zu Köln − Institute of Medical Sociology, Health Services Research, and Rehabilitation Science

Funding
None.

Duration
September 2014 to September 2016

Publications
see publications

Contact
PD Dr. Christoph Kowalski