March 22, 2022
The Healthcare Data Innovation Council second meeting was held on the 22nd of March 2022, participants comprising healthcare providers, patient organisations, academia and research organisations, industry representatives, platform developers, lawyers and experts of ethics and bioethics took part in the conversation.
At the beginning of the meeting, Stefano presented the results from the feedback gathering survey that was shared with the Council members between February and March. The main results from the survey suggest that there is an alignment among the participants regarding expectations of the Council. In particular, the perception of positioning health data as common good and the need for harmonisation of standards and regulations stand out. Almost all respondents agree on the opportunities and the challenges that usage of health data generate in the industry. Among the challenges, the most important are the complexity and the lack of regulations and the shareability and interoperability of data.
After the results of the survey, Andrea shared the feedback from the first round of interviews presenting some of the key points of the conversations:
- The GDPR, regulatory frameworks and research
- New paradigm: are health data personal anymore? The new paradigm makes the point that sharing health data should become a moral responsibility because it helps to progress research and the common good
- Evolution in the approaches: People-Centred Care. In this approach, stakeholders are interconnected through data
- Predictive medicine, sustainability and right to not know. Prediction makes things sustainable but challenges the individual’s right to not know, the latter is limiting the opportunity for personalised and predictive medicine
During the discussion around the survey and interview results, it emerged that the concept of data as common good needs to be backed up by a governance mechanism to organise and manage research, as opposed to the pure common good that is not regulated. Another argument during the discussion was the behaviour of the healthcare system: sharing examples and best practices on how to use the data can stimulate the imagination and transformation of the system.
A bottom-up approach may lead to more transformation and sharing of best practices. Finally, the attention was put on the barriers to sharing data which may come from researchers and institutions who are not incentivised to share data, rather than the individuals.
Following the discussion, Professor Elisa Ficarra presented the DECIDER project. A project funded by EU grants under the Horizon 2020 framework, including 14 partners around Europe. The main goal of the project is to improve clinical decisions in cancer by studying the chemotherapy resistance in ovarian cancer and suggesting additional therapies and drugs which can be used to treat this kind of tumour. The project includes the analysis of several types of data (longitudinal data from several data points, ‘omics’ data, different mutations, and data from images) and aims at analysing them in a systemic way. Within the scope of the project, they are developing a platform that includes all the data which can be extracted from the sample and the results of the predictive model. The platform will offer a tumor virtual board to geneticists and clinicians providing suggestions for alternative drugs.
Before ending the meeting, Andrea presented the high-level structure of the table of contents for the white paper.