The failure of care.data has been largely blamed on a poor communication strategy but Paul Cooper, head of research at IMS MAXIMS says it is equally about our cognitive rationale around what is and is not acceptable.
The modern day consumer understands that information is power. Ironically, it is new technologies that are driving the shift towards greater transparency about how consumer information is used, especially amongst large national or corporate organisations.
Facebook, the world’s largest social networking site, has been heavily criticised for the way it allowed affiliate companies to access its member’s details/’public information’, whilst Google has seen public trust across Europe fall following a series of recent data breaches.
Organisations governing public data will always come under extensive scrutiny, especially within the more sensitive field of healthcare.
As we know, sharing patient information across the NHS is not a straightforward task. One of the largest barriers to success for large-scale projects aiming to ‘join up’ healthcare data is getting the modern day patient onboard – see the Summary Care Record, HealthSpace and care.data as prime examples.
Patients frequently ask ‘Why isn’t information shared between my providers of care?’ or ‘Why am I repeatedly asked the same questions?’ But in the same breath patients also address their concerns about national systems storing and accessing their medical information.
Therein lies a common problem associated with digitising healthcare: patients already expect information to be shared but upon learning that they are not, they become anxious about the use of national databases for those purposes.
So what is the cognitive rationale behind the attitudes towards patient information, which has lead in part, to the delay of the cara.data scheme?
Control and sensitivity
A patient’s willingness to disclose information is about the sensitivity and the perceived control or trust in the system in which the information is stored.
Systems that are typically low in sensitivity and low in control are social media tools such as Twitter and blogs – these are wide open and have little or no control over who reads the published content. No one discloses sensitive information in a medium over which they have no control; for example you wouldn’t have a consultation with your doctor using Twitter.
On the other end of the spectrum we have systems that are high in sensitivity and high in control or trust including online banking, self-assessment tax returns, and discussing medical issues with your GP. These examples include highly sensitive or valuable information, and we are only prepared to share it with a system or person that we control or trust.
Software, which is used for everyday activities, generally has low to medium levels of sensitivity. Such systems are trusted or have some degree of control over its disclosure to unauthorised third parties. These include Google which learns information from search histories, supermarkets monitoring shopping habits through loyalty cards, or mobile apps accessing information via social media circles, for example work, friends, special interests.
The acceptability horizon
There is a threshold for which consumers will feel comfortable disclosing sensitive information without sufficient control or trust – an acceptability horizon. Below the horizon, for example, using Twitter or discussing a medical condition with a GP, are all tolerated in society, however systems that are introduced above the line are treated with nervousness and suspicion.
The problem facing NHS England is that the summary care record and also care.data are both way above the horizon – both contain sensitive information and patients do not have control over its use or disclosure (despite care.data being anonymised).
So, referring back to the ‘common problem’, we have patients wanting a joined up health service, yet are concerned about the NHS divulging their data – how do we solve this problem?
Giving back control
It’s really very simple. The answer is to transfer responsibility for the electronic patient record from the NHS to patients. This would mean patients would own and control their own health records, granting access to their carers as required. It truly becomes their data, not the NHS’.
Practically speaking, patients would store their data somewhere they can control and which they trust – possibly a trusted ‘cloud health record’. Data could be accessed simply and securely, through the emergence of mobile apps. This approach will address the conflict in patient expectations whilst bringing the system below the acceptability horizon in order to succeed.
Paul Cooper, head of research, IMS MAXIMS