A group of charities have written to the Secretary of State for Health, Jeremy Hunt, to demand immediate action for an awareness campaign over NHS England's care.data project.
The charities, which include Action on Hearing Loss, Mencap, National Autistic Society, RNIB, and Sense, claim that the limited awareness campaign currently being undertaken will disadvantage disabled people as it is so low key.
"We are deeply concerned about the awareness campaign that has been undertaken to inform people about this project and to highlight their right to object. While a national leaflet drop of the standard version of the leaflet is under way, accessible versions of the information are not being proactively distributed," claimed the charities in a letter to Hunt.
It continued: "This has deprived certain groups of people of the opportunity to be able to make an informed choice about the future of their medical records and register an objection if necessary.
Inadequate provisions have been made to target people with a learning disability, autism, or sensory impairments, to ensure that they receive the information in a format that they can understand.
"Many people will be unable to read or understand the standard print leaflet that they receive. The only means to access alternative formats is to proactively request them via the telephone number on the leaflet. If people are unable to read or understand the original leaflet, they will be unaware of the availability of support or accessible formats."
The information campaign to inform people about care.data and the impending extraction of patient records from GP surgeries to a new national database was delayed in the autumn after an intervention by the Information Commissioner.
Instead, the process will go ahead in March after a leafleting campaign intended to highlight the initiative and the supposed right of people to opt-out.
"We have already heard reports of someone with a learning disability who saw the 'better information means better care leaflet' and was unable to understand it at all. He said that had someone not informed him that it was important, he would have thrown it away and would definitely not have called the telephone number to request an easy read format of the leaflet as he did not know who he would be calling or why," claimed the charities.
It continued: "In another instance, a person who is registered blind was not aware of the leaflet having arrived at his house. As it was an oversized leaflet and not an addressed letter, he threw it away thinking it was a piece of junk mail. He was only made aware of the existence of the leaflet and the Care.Data project when a neighbour asked his opinion on it.
"These examples highlight the importance of a proactive awareness campaign for those who cannot access the standard format of the leaflet to enable informed choice."
The charities also complain that the leaflet omits essential information regarding the way in which patient records data will be stored and used.
"The leaflet does not inform patients of the strong possibility that their data could be used in a pseudonymised way and not just in the anonymised way that is implied. According to the HSCIC website, there "remains a risk of individuals being identified" when using pseudonymised data.
"This risk needs to be communicated to people in a way that they can understand, especially when people, such as those our organisations support and campaign with, have complex and multiple conditions that make their identification more likely."
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