We have banged on many a time about patients owning data – we always talk in the future tense: we invoke the pioneers of the internet calling for raw data now; we keenly anticipate that great moment when data will give patients the power to organise their own health. We present it as a promise for the future; we put dates on it: 2015; we await information strategies that will help deliver it.
Pause for a Eureka Moment in the ThinkTank in Birmingham – there is no need to wait. That is how it works now. Patients are already running most modern health systems – we just have to recognise that and give them a hand to run it better. That is the claim of Dr Al-Ubaydli CEO of Patients Know Best (PKB) who describes the patient as the only one who has been to all the appointments. As specialists know more and more about their specialisation, they know less and less about the patient. Appointments begin by clinicians and nurses asking the patient what to do next? Locked up in their specialist silos, they need the patients to tell them what has happened the last time they went to (another) doctor. IT enables the patient as the data owner to have the power not just to permit access for others but make it happen themselves. A recent HSJ supplement provides examples of how decent data management can contribute to effective integrated care and looks at ways in which patients, especially those with long term conditions, can access their records in order to take greater control of their own care.
All that remains is to recognise the reality and provide the IT enabler. My question to Muhammed, the provider of the Eureka moment, was “what are the non-clinical outcomes of the recognition of the patients’ power? Do they become the advocates and spread the word? Are they feared because with knowledge comes the ability to expose mistakes?” Possibly, but one case history came at once to his mind where the ‘difficult’ teenage patient was transformed by the gift of his records when he turned 18, accessing them on his iPhone.
The Patient Information Forum (PIF) conference was where Mohammed spoke – Birmingham for a moment was Damascus. The other take away tip was that information should seek not just to inform but to change behaviours and this needs to be the focus of evaluation. It is easy now to collect information but it becomes no easier to get people to act on it.
The Moore Adamson Craig Partnership supports user and public participation, trains lay representatives and develops responsive health, care and education organisations. We are ready to work with and support all those who want to make sense and a success of the new structures of patient and public engagement within the new arrangements for health and social care commissioning and providing. Feel free to contact us to discuss the opportunities.