I’ve been involved in a number of discussions and debates around patient empowerment, and how the patient is the owner of their own data. However, these discussions, in a lot of cases, talk from the perspective of how things should be, without referring to the current state of affairs.
Everyone agrees that healthcare providers working together is a good thing. But very often, when it comes down to signing sharing agreements, there are always a small proportion of organisations that shutter up their data.
But, why is this? It’s because current legislation says that data about an individual is not owned by that individual. It’s the data controller that holds the power. As a patient, I am powerless to ensure that my records are shared, if organisations I use for my care choose not to share data.
Before patients can be empowered, access to data needs to be available to those with a legitimate relationship with the patient. Clinicians also need to be able to see all of the records associated with a patient. As the prevalence of EHRs grows across healthcare, the problem of data silos will only increase. The constant march of digitisation is a good thing, but it has been slow to resolve the problem of availability of data when it matters.
There is a strong argument to be had – and this debate is likely to become much more prominent in the coming years – that not sharing data should be considered a clinical safety risk. Allowing clinicians to make decisions in the blind is a dangerous thing. The only option left to healthcare professionals at the point of care, in the majority of encounters across healthcare economies, is to trust that the patient is able to inform clinicians of conditions, allergies, and medications that could cause dangerous contra-indications, or make matters worse for the patient.
Putting the patient in control of their data will mean that the patient will always be able to choose what organisations can view their data. It also means that the structure of confidentiality can change from the aspect of consent to potentially share, merely to explicit consent to view data at the point of care.
Changing data protection legislation, in relation to healthcare, to ensure that the patient is the owner of their data, will stop narrow-minded, but highly opinionated, organisations from sand-boxing data. But, as things stand now, patients and service users are as empowered as a cat in boxing gloves.
Does an allergy to penicillin exist if there’s no one around to read about it? It does, but it only gets noticed when it’s too late.