How can we deliver on the promise of emerging health technologies in a manner that enables fast innovation, yet allows for appropriate monitoring and evaluation of their impact? How can we explore new ways of data sharing to quickly react to and help with international crises such as Covid-19?
This report, commissioned by the Health Foundation, is the result of an initial investigation into the role of new models of data stewardship to support the evaluation of new health technologies.
New models of data stewardship, such as data institutions, have the potential to benefit the public and private sectors by facilitating and incentivising mutual data exchange and access, while benefiting the wider public in terms of maintaining trust and helping ensure the positive impact of new technologies.
We explored three specific use cases: digital-first primary care technologies; online misinformation and vaccine hesitancy; and patient flow automation.
Key challenges identified through our research (desk research, interviews and workshops) were related to:
- the data needed for evaluation not being collected (sometimes due to a lack of resources)
- the data not being accessible (sometimes due to a lack of incentives to share, worries related to sensitive data, lack of clarity on what is permissible)
- when accessed, the data not being as useful as expected (sometimes due to a lack of quality, consistency or standards).
In our research we explored where a data institution – an organisation that would play an intermediary role by stewarding data for monitoring and evaluation purposes – could improve the status quo. We found that, more often than not, a data institution alone would not be sufficient to enable data to flow for evaluation purposes, and other action is required - such as the introduction of new procurement rules that ensure access to data or the development of new open standards.
We have identified key recommendations and next steps for key stakeholders such as evaluators, funders, innovators, health and care providers, and patient and practitioner groups.
- Evaluators should consider themselves data institutions, and act as convenors in the sector.
- Funders should explore new models for data access through scoping and pilot studies and explore other use cases.
- Innovators should explore best practices to collect sensitive data and work together to develop standards for benchmarking and comparison.
- Health and care providers should convene innovators and healthcare practitioners to align understanding related to data collection for evaluation purposes, and clarify that from the procurement stage.
- Patient and practitioner groups should explore cooperative models for collecting data about their experience.
Please get in touch if you would like to get involved, we’d love to hear from you.