The wider institutional, policy and sociotechnical context is often identified as a key factor in the failure to move from a demonstration project to a transferable and sustainable mainstreamed service. This context can include policy, political, IG, interoperability, legal, market, IP and regulatory considerations.
HealthTracker implemented existing guidelines but had limited success in securing endorsement from well-established professional societies. Attempts to embed it within the reimbursement model failed because of the novelty of the idea.
PatientsLikeMe expanded beyond patient-reported experiences and outcomes to become a biobank. It raised a $100 million investment and secured a critical technology partnership with a Chinese genetic research firm, growing to 250 staff. Shortly afterwards, a review by the Committee on Foreign Investment in the US (CIFUS) ordered a divestment by the Chinese firm as part of the wider deterioration in US-China relations. This prompted the rapid sale of PatientsLikeMe in 2019 and the loss of a significant part of the workforce.
For CYPHP, Information Governance and public trust have been central. There have been a number of challenges, such as competition rules and pressures to maintain organisational financial balance. However, policy has supported cooperation, crucially through building relationships at all levels of organisations: executive, managerial, clinical and administrative. A strong patient focus has also been key to success. Ensuring the flow of data between organisations requires a complicated set of data-sharing agreements; this enables data flow between multiple providers, for direct clinical care, service evaluation and research. Intra-organisational liability has also presented challenges, but a Partnership approach, as described above, has enabled effective, shared governance at organisational and clinical levels.
TRANSFoRm started as an EU-funded project. The UK’s participation in such schemes following Brexit is uncertain [37].