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MP calls for data access deal with pharma firms (HSJ Article)

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Mark Platt
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MP calls for data access deal with pharma firms (HSJ Article)
Posted on: October 2 2013, 11:56 am

2 October, 2013 | By James Illman

Drug companies wanting access to a new NHS patient database should be forced to make their clinical study reports data available to relevant bodies in return, an influential Conservative MP has told HSJ.   

Sarah Wollaston said she supported the new care.data project “in principle” but called for a block on the extraction of confidential patient data from GP records until a range of “ethical and legal issues” surrounding the project were resolved. 

Speaking exclusively to HSJ after taking part in a 2020Health debate at a Conservative conference fringe session, she said she would make representations to health secretary Jeremy Hunt on the subject.

She said: “This has to be a two way street with the drug companies. If they are going to benefit from our data, we have to benefit from their data.

“There should be a requirement for them to share clinical study report data [if they want access to care.data].”

The former GP said drug companies had for too long witheld data which did not support their products, adding that there would be much value for patients and the medical community if “bona fide” research institutions could access clinical study data.

She added: “The blanket opt in approach is the wrong way around. We have to make the case to patients why this is so important and people must have the ability to see who has accessed their record.

“I think most people will opt in [when they understand the benefits] but I am concerned about the legality of extracting this data without patients having [explicitly] opted in.

“If I were a GP I would not allow my patients’ data to be extracted until the legality was sorted out.” 

The care.data project, which is already being delayed following the Information Commissioner’s Office raising legal concerns, involves linking up data from across the different care settings.

The first stage of the project, for which a start date has yet been agreed, will see data from GP records extracted by the Health and Social Care Information Centre and linked up with patient data from the hospital episodes statistics (see box for more).     

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