Leistungsgerechte Vergütungsansätze und zielgruppenorientiertes Informationsmanagement im Bereich seltener Erkrankungen

authored by

Svenja Litzkendorf

supervised by

Johann-Matthias Graf von der Schulenburg

Abstract

The term rare diseases refers to a group of heterogeneous and mostly complex clinical pictures that affect approximately 4 million people in Germany. In addition to the small number of people affected by each rare disease, their common characteristics include the above-average costs and time required for the treatment and counselling of those affected, which is insufficiently remu-nerated. A lack of comprehensive, quality-assured and comprehensible information for people with rare diseases, their relatives and medical practitioners can also be identified. Thus, rare diseases are highly relevant from a health economic and care policy perspective. In the National Action Plan for People with Rare Diseases, various proposals for action were formulated to im-prove the situation of those affected and to ensure high-quality care. These included, among others, the development of adequate remuneration systems (field of action: care and centres) and the establishment of a cross-disease, quality-assured information portal (field of action: in-formation management). In order to be able to implement these measures, knowledge is needed about the preferences of those involved with regard to future remuneration instru-ments and specific information needs. The aim of the dissertation is to analyse and develop performance-based remuneration ap-proaches and a target group-oriented information offer in the field of rare diseases. In the first module, the appropriateness of existing remuneration options is discussed and approaches for performance-based remuneration are developed. Subsequently, the needs and preferences of patients, their relatives and medical providers for different information services will be analysed and requirements for a central information portal will be derived. In addition, quality criteria for online information on rare diseases will be developed, the quality of existing information offers on the internet will be analysed and possibilities for information management in the area of conflict between quality assurance and target group orientation will be explored.In the field of action of care and centres, a clear undercoverage of costs in the care of people with rare diseases across diseases and across different existing forms of remuneration can be identified. From the point of view of representatives of specialised care facilities, health policy actors and patient representatives, there is an immediate need for action in order to sustainably maintain the care and centre structure developed in the Action Plan and to ensure high-quality care. A special flat fee for rare diseases can be identified as the preferred form of remuneration, which takes into account the special time requirements in the care of those affected. The flat rate should be differentiated according to different degrees of severity and reimbursed in addi-tion to the regular remuneration. In the field of information management, a considerable need for online-based information on rare diseases can also be identified, which should be accessible via a central access point. De-pending on the indication, disease status and other personal factors, the specific information needs vary. However, central information categories, such as psychosocial and socio-legal ad-vice, current events and self-help offers, can be derived across the board, which patients, their relatives and providers prefer bundled on a cross-disease information portal. In order to take into account the fact that information websites on rare diseases often do not meet specific qual-ity criteria, but can nevertheless be significant for those looking for information, a procedure should be chosen for the selection of the information base that is equally quality- and needs-oriented and that transparently presents the quality of the information sites offered. Overall, it should be noted that in both fields of action, preference-based approaches for per-formance-based remuneration and target group-oriented information management could be developed for the entirety of rare diseases. Further efforts are now required in order to imple-ment the developed approaches in practice, for example by means of model framework agree-ments on a performance-related special flat rate between care providers and insurance provid-ers for selected rare indications. In order to promote an improvement in the quality of the in-formation landscape in the area of information management, studies on the professionalisation of the relevant providers are necessary, among other things.

Organisation(s)

Institute of Health Economics

Type

Doctoral thesis

No. of pages

126

Publication date

04.06.2024

Publication status

Published

Sustainable Development Goals

SDG 3 - Good Health and Well-being

Electronic version(s)

https://doi.org/10.15488/16758 (Access: Open)