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Opt-out system essential for data sharing

Public inadequately consulted, say experts

Jo Carlowe

Friday, 12 December 2014

The public was inadequately consulted in the early stages of the care.data programme, an All Party Parliamentary Group (APPG) has concluded today. 

The APPG for Patient and Public Involvement in Health and Social Care has today published its report* on the care.data programme, in which it suggests that an opt-out system is necessary. 

The key findings include:

  • That most participants agreed that an opt-out system is necessary in order to ensure that researchers have large enough datasets to make the scheme worthwhile. 
  • All organisations agreed that the public had been inadequately consulted in the early stages of the care.data programme and that it was therefore correct to halt the programme to allow further public consultation. 
  • The report described a need for open consultation on the content of the dataset to ensure it includes data for common diseases seen in general practice. 
  • In order to alleviate public and organisational concerns, NHS England has confirmed a phased roll out (pathfinder stage) for the care.data programme, starting with between 100 and 500 GP practices in the autumn of 2014.
  • The legal penalties to be imposed on individuals and organisations who misuse or abuse patient data remain to be resolved. 

The APPG will closely monitor the implementation of the care.data programme as the pathfinder stage progresses. As the secretariat for the APPG, the Patients Association will continue to record and analyse concerns raised by its members and information received via its Helpline. 

Katherine Murphy, Chief Executive of the Patients Association, said: “Evidence taken from a cross-section of healthcare charities, royal colleges, the research community and NHS England, all points towards strong support for medical data sharing in theory. Patients and the public are broadly supportive of the principle of using health data for research that is in the public interest. However, many people still have deep concerns about the programme and are worried about how their personal data will be used.”

Commenting, Professor John Williams, Director of the Royal College of Physicians Health Informatics Unit (HIU), said: “The Royal College of Physicians welcomes this report from the Patients Association and APPG on Patient and Public Involvement in Health and Social Care. The RCP agrees that more effort needs to be put into communicating the benefits of effective record keeping and sharing of patient information.

“The RCP also strongly argues that consent for participation in the care.data scheme must be ‘presumed’ so that patients have to actively ‘opt-out’ should they not wish any of their data to be shared. An ‘opt in’ approach based on active consent would render the scheme inoperable as this is likely to result in a low participation rate, which in turn will yield insufficient data to be able to draw meaningful conclusions that will bring benefits to future patients.”

Dr Peter Carter, Chief Executive & General Secretary of the Royal College of Nursing, said many nurses see the benefits of sharing more data in the health service. However he added: “While there’s certainly a strong case for using patient data for research purposes and for improving health care, it’s crucial that this data is handled properly and kept safe. Many patients have entirely understandable concerns that this hasn’t been happening.

“NHS England was right to pause the care.data programme and to take these concerns on board. This important initiative should continue but greater safeguards need to be put in place. The establishment of a care.data governance board would ensure good information governance and compliance with data protection requirements.”

* Care.data Inquiry. The All Party Parliamentary Group for Patient and Public Involvement in Health and Social Care. November 2014

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