Why the NHS Why the NHS Care Data Programme Care Data Programme

should not proceed should not proceed as currently plannedas currently planned

Why the NHS Why the NHS Care Data Programme Care Data Programme

should not proceed should not proceed as currently plannedas currently planned

Aminpour AmeliaJem MirjamDickie Claire

Trevor Miranda Johari Alia

Chen WenjiaLahiri Shaon Sandu Meda Nowlan NaomiCox Hannah

BackgroundBackground

The Care Data Programme is designed to ensure that commissioners have access to a dataset that contains linked information from all GP practices and all hospitals.

 NHS can use this information to get a complete picture of what is happening across health and social care and to plan services.

Informed Consent vs. Implied ConsentInformed Consent vs. Implied Consent

Informed Consent:

o permission obtained from a patient to perform a specific test or procedure o written in a language understood by the patient and be dated and signedo Voluntary, and obtained before certain procedures

Implied Consent:

o Agreement by a patient to allow disclosure of private health information o A granting without formal agreement, e.g. a patient’s appointment with a

physician

Is the current publicity campaign sufficient to gain consent?

No way for the public to work out who has their medical rNo way for the public to work out who has their medical records or to what use their data will be putecords or to what use their data will be put……

PrivacyPrivacy

PrivacyPrivacy

The extraction of personal confidential data into the HSCIC

Patients may feel a loss of individual autonomy (no patient consent)

The processing of the personal confidential data when held by the HSCIC

Threats associated with ‘cyberspace’ such as hackers attempting to access the data illegally

The onward of disclosure of data from the HSCIC

Risks of jigsaw attacks increase as more effectively anonymised data are made available

DP Act vs. HSC ActDP Act vs. HSC Act

Data Protection Act

o GPs have duty not to share informationo Could see potential legal action from patients

if practices dont take “reasonable steps” to inform them.

Health & Social Care Act

o GPs have statuatory obligation to provide data to Health & Social Care Info Centre

Quality of Medical CareQuality of Medical Care

Whether patients will withhold information

Financial benefits or healthcare?

Reasons why it can’t go aheadReasons why it can’t go ahead

Need clarification regarding what “reasonable steps” to inform patients are.

Need adequate information campaign & consulting process

Is implied consent enough?

Anonymity of data needs to be prior to extraction from GP database

Doctors’ conflicting legal obligations must be addressed

General public health concernsGeneral public health concerns

Long established patient confidentiality being undermined.

‘Opt-out’ approach not the right way to treat public confidentiality or retain confidence.

-Medical records could have significant errors in them

How to create awareness amongst hard to reach groups such as vulnerable patients and patients who do not receive routinely access services (and therefore don’t visit their GP in the notice period)?

GPs, patients and even an MP voice concerns...

GP concernsGP concerns

Comments from GPs included:

- It’s just another tool to manage performance

- Patients not being told about the use of their info

- Info could be used for political reasons

- Just all part of the creeping privatisation of the NHS...

But more worryingly:

Do you plan to personally opt out of the care.data scheme?

Yes - 41%

No – 43%

Don’t know 16%

Source: Pulse snapshot survey of 391 GPs, January 2014

...GPs are directly involved, shouldn’t they be consulted in the decision and method of implementation..?

Patient/public concernsPatient/public concerns

A phoneline set up to answer queries from patients regarding the data-sharing scheme received almost 2,400 calls in the first few weeks (Jan, 2014) of a national publicity campaign:

The top five questions from patients:

“Can I change my mind?”

“I can’t get to my GP practice to object what should I do?”

“How long have I got to decide if I want to object?”

“Do I need to do anything if I’m happy for my information to be used?”

...Public confusion is a concern because if people don’t clearly understand how can they give informed consent?

An MP’s concernAn MP’s concern

Labour MP Roger Godsiff has a Parliamentary ‘Early Day′ motion calling for the whole care.data scheme to be ‘indefinitely′ delayed until further consultation takes place.

...He has suggested there should be "no faith" in the official guarantees of anonymity.

It needs to be done ethically…

Care Data Programme--Care Data Programme--

RecommendationsRecommendations

Anonymity of data needs to be prior to extraction from GP database

Doctors’ conflicting legal obligations (The Health and Social Care Act vs the Data Protection Act and the GMC’s Duties of a Doctor) must be addressed

Patients should be able to determine when are where their own medical information is used - patients need to be fully informed - this needs more time

Government first needs to deliver the promise of being able to view our medical records online (supposedly by 2015), to allow patients to check their personal information is correct, and retain public trust in healthcare

Until then at least, opt-in would appear to be the best method

Thanks!Thanks!Thanks!Thanks!

Aminpour AmeliaJem MirjamDickie Claire

Trevor Miranda Johari Alia

Chen WenjiaLahiri Shaon Sandu Meda Nowlan NaomiCox Hannah