This study aimed to explore the meaning, feasibility and implications of the Learning Healthcare System concept.
It was rooted in an English context, but it was recognised that much significant work on Learning Healthcare Systems was taking place in other countries, particularly in the US, so many of our interviews and site visits took place there. While our findings are particularly aimed at the English healthcare system, where the Learning Healthcare System concept has been largely unknown, they are also of much wider relevance.
Phase 0
A website was set up (www.learninghealthcareproject.org) at the beginning of the project and was updated with interview and seminar synopses and emerging findings, as the consultations took place. The site was promoted through a number of online channels. Members of the public, patients and experts were invited to comment on the items uploaded to the site, so that their feedback could be reflected in the final report.
Phase 1
A scan of the literature was conducted to identify relevant academic, grey and commercial literature on this topic.
Phase 2
Two expert seminars were planned to address gaps in the literature:
1. Working Model Seminar: A seminar was due to be held in Boston to explore the technical feasibility of Learning Healthcare Systems. Boston was chosen because it is a world centre in the development of this topic. Unfortunately, this seminar was cancelled because of poor weather. The individual participants (see acknowledgements) were interviewed separately.
2. System Implications and Acceptability Seminar: A seminar was held in London to explore the ethical, legal, regulatory, workforce planning, training, and economic implications of these potential developments. London was chosen for this seminar because it is a major healthcare administrative centre and home to a number of patient groups, think tanks, medical ethics centres, statistical, regulatory and healthcare planning organisations and health technology companies. This seminar had around 20 participants (see acknowledgements) with 6 focus group sessions. Two of these sessions were added to cover technical gaps left by the Boston seminar.
The seminars identified points around which there was a high degree of consensus, those where there was significant uncertainty, and those about which the participants did not have sufficient information to report.
In association with the seminars, in-depth interviews were held with experts (see acknowledgements) in key fields. These interviews were used to seek clarification or further information on issues that could not be resolved from the literature or during the seminars. Around 25 interviews were conducted.
Phase 3
A thematic analysis, of the literature, seminar and interviews was conducted to generate the final report, outlining our findings. The aims of this report are to:
- Raise awareness of the Learning Healthcare System concept
- Identify what action is required to realise the benefits and mitigate the negative implications of such systems
- To inform and focus The Health Foundation’s future work in this area
The audience is intended to be wide, including, patients, clinicians, providers, commissioners, politicians and research funding bodies.