The All Party Parliamentary Group (APPG) for Patient and Public Involvement in Health and Social Care feels better education is required surrounding the controversial care.data programme.
The APPG, which aims to promote engagement between health and social care providers and users, has been observing the project throughout 2014 and has published a report on its findings.
According to the document, evidence taken from a cross-section of healthcare charities, royal colleges, the research community and NHS revealed that there is strong support for medical data sharing in theory.
It says that patients and the public are broadly supportive of the principle of using health data for research that is in the public interest, but it was right that the care.data programme was paused because the public had been inadequately consulted.
The APPG has also called for an open consultation on the content of the dataset to ensure it includes data for common diseases seen in general practice.
Those consulted believed an opt-out system is necessary in order to ensure that researchers have large enough datasets to represent the population as a whole, but this makes proper public consultation absolutely necessary.
“Our received evidence indicates that even though a leaflet was mailed out to every household, the content of the leaflet lacked clarity,” claimed Patients Association CEO Katherine Murphy.
“Many of our respondents were unsure as to what data will be shared, who it is to be shared with and why and what rights patients have in making decisions about the use of their personal data.
“This may have resulted in their knee jerk reaction to wanting to opt out as a safe option,” she added.
During enquiries into the care.data programme, NHS England confirmed it is continuing its phased rollout of the project, claiming this will be the best way for GPs to ensure patients are informed of the purposes of this data sharing, its safeguards and how they can opt out.
The APPG report also claims that legal penalties to be imposed on individuals or organisations which misuse or abuse patient data remain to be resolved.
“There is a legal basis for data sharing and there has been a change of law, all data must be auditable and audited,” claimed Tim Kelsey, national director for patients and information at NHS England.
“There will be an introduction of ‘one strike and you’re out,’ i.e. if an organisation misuses data or breaks the rules, they would receive a ban on having access to data ever again,” he added.
Over the course of 2015, the group will be observing implementation of the pathfinder stage, continuing to record and analyse concerns raised.
A further report will be published on care.data’s progress next year if necessary and decide whether any further action needs to be taken.