Kicked off in December 2020, a third stream of the Value of Treatment project on Transversal Topics is officially underway over a three-year period from 2021 to 2023. A case study on chronic pain has begun and soon a case study on sleep and wake disorders is to follow, potentially among others.

The group study on chronic pain, chaired by Professor Rolf-Detlef Treede nominated by the European Pain Federation (EFIC), includes experts nominated by the European Academy of Neurology (EAN), the European Psychiatric Association (EPA) and patient representatives from Pain Alliance Europe (PAE), officially began its work in December 2020 and a final report study is expected to be released by the end of 2022.

The objectives of the study have been defined as follows:

1) To explore the patient pathway of adults of working age in three selected diseases: fibromyalgia, painful diabetic neuropathy and non-specific low-back pain.

2) To compare Interdisciplinary Multimodal Chronic Pain Management with current care = monomodal therapy (drug or physiotherapy or psychotherapy alone) in adults of working age.

The study will focus on the following gaps:
a. Long waiting times to access primary care (GPs)
b. Lack of referrals to secondary care between primary care – secondary care & tertiary care (for a and c).

For more information, please visit the VOT Transversal Topics page in the Value of Treatment project section of the website:

On 8 June 2021, EBC hosted a virtual Synthesis Meeting for the Value of Treatment 2 case study working groups to present their preliminary findings.

The Value of Treatment for Brain Disorders (VOT) is a health economics and outcomes research project coordinated by the European Brain Council (EBC). EBC conceptualized in 2015 the Value of Treatment research framework with a first VOT study to address the increasing all-age burden of brain disorders–both neurological and mental alike.

Risk reduction, preclinical and early detection, and timely intervention are seen as the solutions to help national health systemsand society cope.In 2019, in order for the research to dig deeper into the current unmet needs in health care using a value-based approach, a second round (VOT2) on new therapeutic areas was launched; focusing on The Value of Early Coordinated Care for Rare Diseases (Ataxia, Dystonia and Phenylketonuria) and The Value of Early Intervention and Continuity of Care for Mental Disorders (Anorexia Nervosa, Autism Spectrum Disorderand Major Depressive Disorder).

Throughout 2020, joint working sessions aimed to exchange and build synergy between the research-work and the European Commission DG Sante Rare Diseases European Reference Networks (ERN-RNDand MetabERN) as well as the EU H2020 PECUNIA project on mental health services.

Moving towards the project’s last phase (Phase 3 “final results and publications”), EBC together with its members (EAN, EANS, ECNP, EFNA, EPA, EPNS, EUFAMI, FENS, GAMIAN Europe, IBRO) and experts who are participating in the research convened a meeting on 8 June 2021 to present a synthesis of the VOT2 research project results so far. The meeting brought together all experts from within VOT2 as well as external experts and a wider audience from the community. The experts presented their preliminary findings, which can be read in more detail in the full event report, downloadable below.

Both EBC position papers will be released on 7 December 2021 to be followed by scientific publications(Q1 2022). Beyond the research design and considering current context, the impact of Covid-19 on treatment and healthcare transformation will also be further explored.

There is consensus among stakeholders that patient engagement at different points of the medicines lifecycle is critical to fostering patient access to innovative therapeutic solutions, and delivering better health outcomes for patients.  IMI PARADIGM, a public private consortium consisting of patients, academia, industry, HTA bodies and regulators, developed a toolkit to make patient engagement in medicines development easier for all.  The toolkit has very practical tools that can be used as such or localised to reflect institutional specificities:

Planning Patient Engagement

• Raising awareness on managing competing interests in a multi-stakeholder environment: Guidance to patients and engaging stakeholders
• Enhancement of the EUPATI industry guidance
• Recommendations on required capabilities for patient engagement
• Patient engagement agreements explained
• Patient engagement in medicines development: Recommendations on how to find the right match for the right patient engagement activity

Conducting Patient Engagement

• The code of conduct
• Working with Community Advisory Boards: Guidance and tools for patient communities and pharmaceutical companies
• Patient Engagement in Early Dialogues: Tools and resources for HTA bodies

Reporting and Evaluation

• Patient Engagement Monitoring and Evaluation Framework
• Guidance for reporting and dissemination of patient engagement activities

To tools are available free of charge at the following link: http://imi-paradigm.eu/petoolbox/

You’re invited to test it, localise it and disseminate the information in your organisation and to your partners.

The 3rd Brain Innovation Days digital event on “Fast-tracking brain innovation in times of COVID-19” will take place on 27 March 2021 (12:30 – 14:00 CET)

The last 14 months have been a most testing time for the world in general and for global health in particular. COVID-19 took the world by surprise as weaknesses were exposed in public health systems’ preparedness to face pandemics and we continue to face the consequences over a year on. However, the emergence of COVID-19 has also succeeded in accelerating innovation in science, treatments, healthcare and health management.

Positive results have been observed where a stronger emphasis on collaboration among different players was placed. From researchers to clinicians to community to biotech, public-private partnerships were strengthened, and, thanks to increased responsiveness from authoritative bodies, more agile ways of fast-tracking innovation were set in motion.

The purpose of this Brain Innovation Days digital session, the 3rd in the series, is to explore the positive direct and indirect results of COVID-19 pandemic response and research on the brain innovation ecosystem. The session will feature key opinions leaders, patient testimonials, clinicians, representatives from the EU and WHO level and the industries that were forced to adapt to this rapid change of pace in innovation.

The European Brain Council (EBC) is pleased to launch the Save the Date for the Value of Treatment 2 (VOT 2) Synthesis Meeting, to be held virtually on 8 June 2021 (13:00-17:00 CET). Experts participating in the research will present a synthesis of the results so far and examine the most critical issues in brain diseases in Europe from different perspectives including policymakers, innovators, academia and industry, medical professionals and patient organisations. 

Study Background

Value of Treatment (VOT) for brain disorders

The Value of Treatment (VOT) for brain disorders is a health economics and outcomes research project addressing all brain disorders and coordinated by EBC. Brain disorders – both neurological and mental alike – constitute a major factor, alongside cancers and cardiovascular diseases, driving the overall burden of diseases in Europe. Neurological and psychiatric disorders across all lifespans are the leading cause of poor health and disability in Europe. The conclusions of the VOT research project first round released in 2017 (which included case studies on disorders ranging from schizophrenia to Alzheimer’s disease, epilepsy, headache, normal pressure hydrocephalus, Parkinson’s disease, multiple sclerosis, restless legs syndrome and stroke) highlighted the need for more research, early, if possible prodromal, diagnosis and intervention, integrated seamless care underpinning timely care pathways as a solution to address value-based health care in Europe and access to the best treatments available.  

Value of Treatment (VOT 2): a second round of case studies

In the continuity of these conclusions and in the framework of the VOT research, a second round of case studies (VOT2) have been developed on new therapeutic areas focusing on rare diseases (Ataxia, Dystonia and Phenylketonuria) and mental disorders (Anorexia Nervosa, Autism Spectrum Disorder, Major Depressive Disorder). The study to be finalised in 2021 is focusing on “early intervention, bridging the gaps and achieving seamless, coordinated care”, and the objective is to examine health gains resulting from optimized healthcare interventions in comparison with current care or no treatment, and converge data evidence to policy recommendations on how to improve the care pathway(s). Previous joint working sessions aimed to exchange and build synergy between the research-work and DG Sante Rare diseases European Reference Networks (ERNs) programme and research as well as the PECUNIA project from the EU Framework on mental health and well-being. Beyond the research design and considering current context, the impact of COVID-19 on treatment and healthcare transformation is also explored. 

Please see below the provisional agenda of the VOT 2 Synthesis Meeting.