Hospital of Lithuanian University of Health Sciences · PDF fileHealth Care Provider Perspective Hospital of Lithuanian University of Health Sciences Kauno Klinikos Arimantas Tamasauskas

Health Care Provider Perspective

Hospital of Lithuanian University of Health Sciences Kauno Klinikos

Arimantas TamasauskasMember ERN Board of MS (Lithuania)

Member of ERN EURACAN

What is a value of ERNs for EU

• Patient with rare/complex disease FIRST!– For the first time ERNs will provide possibility to help

patients with rare and complex diseases using all available recourses/capacities of EU. Main goal is to promote cooperation between HCPs in EU where expertise is rare or high cost. It will help to implement patients’ rights in cross-border healthcare and to have the highest standards of treatment independently from where they live.

– This is just the beginning for EU, MS and for HCPs. – HCPs in specific ERNs will decide on the ways to

cooperate sharing expertise and resources.

Hospital of Lithuanian University of Health

Sciences Kauno Klinikos

• The NPA is a not-for-profit 501(c)(6) corporation created in 2008 to coordinate a variety of national projects involving the acquisition, analysis and reporting of clinical data from neurosurgical practice, using online technologies.

• NPA Objectives:

– Support National Quality Research Efforts, including Comparative Effectiveness Research

– Satisfy Public Reporting Requirements for programs such as PQRS

– Satisfy practice data collection requirements for ABNS primary certification and Maintenance of Certification (MOC)

– Quality improvement

• Projects: EC-IC Bypass Study– This study is an example of how the NeuroPoint Alliance facilitates multi-center clinical

research in neurosurgery. “We are beginning to tap the power of prospective, audited registries as tools for conducting clinical research that will refine our operative indications and improve the quality of care for our patients”



First waves of ERN

• There are 24 ERNs with over 900 Health Care Centers and close to 300 HCPs, however they are not the same:– The smallest ERN includes 18 HCPs while the biggest - 73

HCPs.– The number of rare diseases covered by each ERN varies

significantly.– Resources needed for diagnosis and treatment differ

according to a rare disease complexity or requirements of technological infrastructure.

• So, resources needed for coordination and collaboration will be different across ERNs as well as HCPs.



HCP – ERN (coordinator) – MS - EU

• The goal of ERN project is not to reach expert level of HCPs, but to gather already established EXPERTS in the field. So, the main goal is to provide the highest quality health care for patients - all audited HCPs were already providing that over years.

• However, initiative for networking has started and new actions are intended for HCPs. Details of collaboration will be discussed and decided inside each ERN:– Coordination of diagnostic and treatment guidelines.– Outcome measurement and analysis across HCPs.– Work meetings.– Communication/teleconferences.– Data sets, analysis etc…

Then it will be more clear how to comply with the new roles of HCP.



Expectations for HCPs

• Ideally……….each HCP expects to have:

• Excellent collaborative relations with all HCPs within the ERN.• To receive/provide second opinion if required.• Participate in joint research collaborations.• Capability to accept all patients who require diagnostic procedures

and treatment.• Constant update of state of the art technology.• Professionals (experts) available for continuous work.• High level professionals and infrastructure for research.• Patient follow-up possibilities.• And of course: support from MS MoH, administrative support, high

quality multidisciplinary team, quality control, tight relation with patient organizations, IT support etc…..



Expectations of HCPs can be different

• Very enthusiastic HCPs– To gain recognition in

professional field– To attract patients– To attract professionals– Advance diagnostic and

treatment modalities– To be a team member of

internationally recognized experts in the field

– To receive funds for new technologies and research

• Skeptical HCPs– Need investment for new

technologies– Need investment into health

professionals (experts)– Need investment for IT, quality

control, follow-up and supporting personnel

– Different treatment costs across MSs (sometimes economically disadvantageous)

– Economically not attractive due to small number of patients

Funding sources/mechanism not well described.



Enthusiasm within HCPs

• Representatives of HCPs in particular ERN – mostly highest level of enthusiasm:– Recognition of high professionalism in the field.

– Possibility to develop guidelines, novel treatments, become/grow as an expert.

– Continuous use of state of the art technologies.

– Boost of research activities.

– Educational prospective (master classes etc.).

• Administration of HCPs – sometimes moderate level of enthusiasm:– HCP recognition in EU or even worldwide.

– More reputable hospital – greater number of patients.

– More money – attracting patients from other HCPs (inside country and abroad)?

– Constant investment into advanced technologies, safety, quality, follow up, infrastructure etc.

– More problems with professionals… keep them attracted to work for HCPs (more investment against ‘brain drain’)

– Investment in data exchange safety and communication tools.

– Other additional expenses (professional meetings, personnel).



Still need to be discussed

• Different legal basis in different EU countries

– Is patient concentration possible in particular HCP inside MS?

• Relationship with affiliated partners (inside/outside country)

– Legal questions

• Remote treatment (cost and responsibility)

• Intellectual property rights



ERNs project will boost MSs confidence to concentrate patients in recognized centers

• It is well established that concentrating patients with rare/complex diseases benefits patient care

• Critical number of patients leads to generalization and development of evidence-based treatment guidelines.

• Further advancement of professional expertise.

• Cost-effectiveness of state of the art technologies.

It could strengthen not only HCPs but Health Systems in MS as a whole



New Benefits for HCPs after launching ERN project

• Better provision of health care due to shared expertise

• Knowledge transfer across EU MS• Continuous training of workforce• Data collection for evidence based medicine• Better organization of patients follow-up• Remote consultations and treatment• Better connection with patient organizations• Better funding for research and treatment ?• Etc………………………………………………………………..



Conclusions

• ERN is innovative and potentially most significant Health Care Project in EU and even worldwide (taking into account number of HCPs and Countries participating in the project).

• To be a part of ERN is a great honor that carries great responsibility…..for HCPs as well as MSs and EU.

– After successful launch of ERN hopefully MS will follow with the reinforcement of internationally recognized HCPs as well refinement of pathways for patients with rare/complex diseases at national level.

– There remains some unsolved questions (IT platform, safe data exchange, merging of datasets….etc.) and probably more will raise after discussion inside ERNs: follow-up meetings at EU level to identify and solve those

– ERN is a continuous project – putting arising difficulties/problems and especially additional costs on HCPs and ERNs shoulders would be dangerous for sustainability of ERN project.



Documents

Hospital of Lithuanian University of Health Sciences · PDF fileHealth Care Provider Perspective Hospital of Lithuanian University of Health Sciences Kauno Klinikos Arimantas Tamasauskas