Select Committee on Health Written Evidence


Evidence submitted by Patient Concern (EPR 11)

SUMMARY

  1.  Patient Concern is broadly supportive of an electronic records scheme, which has many potential benefits but we have serious reservations about the way current plans are preceding. It seems that the push to get the system up and running, after so many delays, means that the pilot scheme for summary records is being launched before various important issues have been resolved.

OPTIONS ON OPTING OUT

  2.  There is enormous confusion among patients on opting out provisions, as a direct result of the mixed messages put out by the various agencies involved. Patient Concern has been corresponding with those most involved and we have been told in writing:

    (a)  that patients will be able to opt out under section10 of the Data Protection Act; and

    (b)  that section10 of the Data Protection Act is not the appropriate way to opt out as this would mean proving that such a record would cause an individual substantial unwarranted damage or distress.

  We have also been told that:

    (a)  that GP practices are responsible for the decision to enter records, so that patients should register any objection with their doctor; and

    (b)  that requests by patients to the Department of Health to opt out have been refused on the basis of inaccurate information—eg that any professional would be able to see their records. If patients' still wish to opt out, they must write to the Department of Health again. Then their wishes will be respected.

INFORMED CONSENT

  3.  Patient Concern considers that informed consent is necessary before patients' confidential health information is uploaded. The current proposals for pilot sites by no means meet this requirement.

  4.  If patients are to make informed decisions about records going on the spine, they must know exactly what information is to be uploaded. It seems that in pilot areas, patients will be notified of the scheme by post and if they do not make any objections known within two months, their details will be uploaded automatically.

  5.  This is putting doctors, with their confidentiality obligations, in an impossible position and flies in the face of medical ethics.

  6.  Imposing a time lag beyond which consent will be assumed is quite inappropriate. There will doubtless be people who, for one reason or another (eg extended business trip abroad) will be unaware of what is happening or who do not take action because they fail to appreciate the significance.

  7.  The Department of Health has stated that it is impractical to obtain explicit consent from every patient affected. If this is so, then perhaps it is impractical to begin uploading records. What is possible in France and Greece should be possible here.

  8.  Patient Concern would suggest that, as the plan is to write to each patient in pilot areas informing them of the scheme, a copy of the proposed upload of their data should be sent, together with a tick box form giving or refusing consent.

  9.  This should cover the problem, identified by the task force, of vulnerable people being unlikely to take advantage of an "opt in" scheme. With the information clearly before them, they would be able to take advice from whichever individual or agency normally assists them with medical decisions.

QUALITY CONTROL

  10.  We are assured that "all data that goes on the Summary Care Record will have to pass quality controls". The time and place for quality controls is before any data is entered, when patients can check accuracy, so every effort should be made to ensure that all patients can do this, preventing mistakes being uploaded.

  11.  Any patient who has tried to correct mistakes in existing health records knows that this is next to impossible. The regulations are very strict and the best patients can normally hope for is that their views are added to the record if they dispute its contents. We appreciate the reasons behind this but the patients trying to achieve accuracy find it thoroughly unsatisfactory. The only way to prevent problems is to make sure that no errors are uploaded in the first place.

ACCESS

  12.  Patients have, as yet, no clear idea who will have access to their summary record. We are told that access will be limited to "members of our health community" but this does little to clarify the situation.

  13.  We understand that it is likely that NHS Direct will have access. We consider it inappropriate that those working on telephone help-lines, where the usual advice is "go to your GP", should be able to view patients' personal details.

  14.  It is also reported that community pharmacists wish to have access (and to be able to update the record). As pharmacists' prescribing abilities expand, there may be some basis for this. However, if patients in small communities, where the pharmacist is known to them, were aware of such access, they might prefer to opt out.

  15.  Smart cards for patients do not yet exist. We are told that in time we shall be able to view our records on Health Space—though this will not be available throughout the pilot areas this year—but of course this will only be possible after the fact. The record will already have been uploaded.

SENSITIVE DATA

  16.  As the summary care record is limited to medications, allergies and adverse reactions, the scope for sensitive data is limited. Nonetheless, the listed medications may reveal more than a patient wishes to disclose (eg HIV status or mental illness).

  17.  The sealed envelope system that we were promised is still at the planning and development stage. Meanwhile we are told that patients can choose to have such sensitive areas omitted. This begs the question of whether an incomplete record is misleading or in some circumstanced harmful. Perhaps it would be more responsible to advise such patients to opt out altogether at this stage?

SECURITY

  18.  We leave IT experts to comment on the detail of "the state of the art protection' offer, save to say that patients are not convinced of the efficacy of the "stringent security controls".

  19.  Some 300,000 smart cards have been issued to staff though none are promised for patients in the near future. In late January, South Warwickshire General Hospitals NHS Trust confirmed that its board had agreed that staff in A and E could share smart cards. They claim that they are not breaking guidelines laid out in the National Care Records Service Acceptable Use policy. This has been followed by much comment revealing the common practice of sharing smart cards—which of course makes any genuine audit trail impossible.

  20.  In addition, those who work in hospitals remark on how frequently computers are left open, displaying supposedly confidential data.

  21.  Patients need to be convinced that the smart card system is fit for purpose.

THE FULL ELECTRONIC RECORD

  22.  All the publicity about summary records has detracted from the many issues as yet undecided (or, if decided, not revealed to patients). We argue that, without the answers to certain questions, patients cannot properly decide whether to allow records to be uploaded at this stage.

    —  Will the complete opt out option still be available when full records are uploaded at some unspecified time in the future?

    —  Which details will be uploaded automatically and which will require consent? We have been told by the Department of Health that "blood tests and Xrays will automatically generate records within the system" and that when "care is dependent on the use of these systems there can be no flexibility for those who receive that care". Does this also apply to referral and discharge letters?

    —  Will historical data be included?

    —  How will access to the full record differ from access to the summary record?

PATIENT CONCERN'S PREVIOUS CONTRIBUTION TO INQUIRIES

  23.  Patient Concern gave oral evidence to the Shipman Inquiry and to the Joint Select Committee of the Lords and Commons on the Mental Capacity Act 2005.

  We should be pleased to answer oral questions from the Health Select Committee on this important subject.

Joyce Robins

Patient Concern

March 2007





 
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