BMJ editor, Dr Fiona Godlee, wrote an editorial today about integrated care because of a recent paper about a pilot scheme in North West London to share data across NHS institutions. North West London’s attempt is laudable, but as Fiona points out, it is not enough – the only way to get truly integrated care is through patient-controlled records:
As for designing better pathways of care, it turns out that the only people who know how the whole system works are the patients. Their input transformed the North West London scheme and became, like integrated care itself, obvious. Only they cross the organisational boundaries, a fact that underlines the wisdom and importance of efforts to give patients control of their own medical records (http://www.patientsknowbest.com/).
All other approaches to integrated care fail. Institution-focused collaboration always exclude all but a handful of original providers from sharing data, because any collaboration beyond a hanful of participants becomes… a handful. The sheer bureaucracy of co-ordination overwhelms participants in these top-down approaches. Social enterprises, social workers, and any innovators in health care provision are invetiably left out. This is why charities like Thalidomide Trust use PKB to provide better care to their patients.
Furthermore, regional collaborations balkanize medical data. Not only do patients and clinicians crossing geographical boundaries suffer, but the regional clusters are too small to attract a marketplace of solution providers. So citizens are unable to use the consumer-driven innovators from other parts of the world, locked into monopoloy contracts and service quality. By contrast PKB provides an open platform for smartphone app developers from all over the world to create new services for patients.