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NEED Newsletter #3

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‍NEED is a 3-year research project aiming to identify and measure unmet health-related needs for a more needs-driven healthcare policy and innovation.

‍Newsletter #3

October 2024

We are delighted to share with you some updates regarding the NEED (Needs Examination, Evaluation, and Dissemination) project. The last few months have been dominated by the selection of health conditions submitted for the NEED call for topic proposals and the set up of the NEED database.

In this newsletter, you will also find interesting upcoming events.

Happy reading!

The NEED team

‍NEED updates and recent events

‍- The first version of the NEED database is now online and openly accessible. Users can directly download the unmet needs data associated with Crohn’s disease, malignant melanoma and long Covid from this link. The database will be regularly updated as new data become available.

-‍ The results of the NEED call for proposal were published on the 5th of September 2024. The NEED website has published a list of 118 unique health conditions identified as having potential high unmet needs in Belgium. From the EU call, 22 health conditions with potential high unmet needs were retained, 13 of which coincide with the Belgian list. The NEED team has selected schizophrenia as the non-rare health condition and sickle cell disease as the rare health condition for the next two case studies. Research on schizophrenia will start at the end of 2024, and on sickle cell disease at the end of 2025. Due to the high number of submissions related to long COVID from the Belgian call for proposals, relevant results from the KCE report 344 (2021) on long COVID will be included in the NEED database.

- The Delphi survey to validate the NEED assessment framework at the EU-level was completed. 26 experts from 17 EU member states and from various European or international organisations participated in the Delphi survey. The publication of the results is expected by January 2025.

- The second NEED international advisory committee meeting took place in Brussels on 11 June 2024. During the meeting, Irina Cleemput (KCE) provided an update on the current state of affairs. This was followed by a presentation on the validation of the NEED assessment framework using a Delphi survey at the EU level by Laurence Kohn (KCE) and Rani Claerman (Sciensano). Claudia Schönborn (KCE) presented the results from the two case studies and Isabelle Huys (KULeuven) shared her experience with the application of the NEED approach/assessment framework to rare diseases and pediatric diseases. Robby De Pauw (Sciensano) presented the NEED database. Muriel Levy (KCE) discussed the identification and selection of health conditions with potentially high unmet health-related needs. Oliver Bujok from InnoVance GmbH, on behalf of the German Research Ministry (BMBF), shared his experience in identifying unmet needs and applying approaches for unmet need reporting for innovation policy purposes. The meeting concluded with a discussion on possible collaboration for future case studies and funding applications led by Charline Maertens de Noordhout (KCE).

- The results from the recent NEED reports were presented at the European Health Management Conference (EHMA) 2024 and at the HTAi annual 2024 meeting (videos available on the Youtube channel of HTAi). The four abstracts related to the NEED project that were accepted for the HTAi conference will soon be published in the International Journal of Technology Assessment in Health Care.

- Charline Maertens de Noordhout presented the NEED project during the webinar "Broadening the role of pharmaceutical services in primary care" organised by the European Observatory on Health Systems and Policies on the 27th of June 2024 (recordiing of the webinar) and the European Patient Forum Universal Access Working Group meeting (more info) on the 9th of September 2024.

- Irina Cleemput presented the NEED initiative during the mini-symposium "Advancing Pharmaceutical Innovation While Ensuring Healthcare Sustainability: A Synergistic Quest or a Futile Endeavor" on the occasion of Wim Goetsch's inaugural lecture on the 11th of October 2024 in Utrecht, the Netherlands.

‍Ongoing tasks

- The development of the colour signals for the indicators included in the NEED database.

- The collection of data on the accessibility and effectiveness of treatments relating to long COVID from Belgian experts.

‍Upcoming events

- Presentation of the NEED initiative and the outcome of the high-level conference under the Belgian presidency of the Council of the EU during the Dutch Medicines Days 16th October 2024, Oss, the Netherlands (more info here). The Dutch Medicines Days conference unites pharmaceutical science professionals to share the latest research, exchange experiences, and foster collaborations across various sectors and international borders.

- NEED steering committee meeting, 23rd October 2024, Brussels.

- Participation in a discussion forum on the impact of innovation on healthcare during the "Cancer care: the future is now" meeting organised by All.Can, 6th November 2024, Brussels, Belgium (more info here).

- Presentation of the NEED project and more specifically on the identification of unmet health-related needs in rare diseases at RaDiOrg's membership day, 9th November 2024, Brussels, Belgium (more info here).

- Presentation of the NEED Delphi study at the European Public Health Conference 2024 in Lisbon, Portugal, 13-15 November 2024 (more info here). The submitted abstract will be published in a special edition - Abstract Supplement of the European Journal of Public Health.

‍NEED is financially supported by the Belgian Federal Science Policy (BELSPO) through the INFRA-FED call.

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