The HIV community seems split on whether the Secondary Care Record (SCR) is one step to far and won’t protect our confidentiality, or is on the other hand, an excellent addition to our health care system.
So why should we be concerned? Most health professionals act and follow confidentiality guidelines by the letter and have to do so because of legal, ethical and professional obligations but while breaches are rare, they do happen!
Also the emergence of laws that criminalise HIV transmission means that someone with HIV could potentially be prosecuted for recklessly or intentionally transmitting HIV. This use of the law has left many people living with HIV feeling stigmatised and sensitive around the issue of disclosure.
Questions have also been raised as to the how accurate the records are and that doctors were unable to trust the SCR database as a single source of truth.
Because of these serious concerns I have tried to clarify the situation with regard to the inclusion of you HIV status and treatment within these SCR records.
The NHS booklet on SCR records that you should have received by now clearly states: “You can have a SCR but limit the information that health-care staff can access. You can discuss with your GP exactly what information is in and isn’t shared through your SCR.”
I had decided to have a SCR created but wanted my HIV status left out but I have now discovered that that is not possible! I will explain why.
In the first instance the records will contain information about: any allergies you have, your current prescriptions and whether you have had any bad reactions to medicines.
Because the SCR includes information on any medication you are taking, if you are taking combination therapy (and your GP knows your status) by default your HIV status is revealed: as for clinical reasons your GP cannot omit any drugs you are taking from the SCR.
However, if you are not on medication and you consider your status as sensitive information, speak to your GP. Your GP can limit information shared by using sealed and locked electronic envelopes. These envelopes were built into the SCR records to protect patient confidentiality.
It’s also worth mentioning, that once the SCR is created you are always asked for permission to access the record (unless you are unconscious). So if for any reason you didn’t want to allow a health worker to view your SCR, just say NO.
The SCR information line reiterated to me that If you are NOT on medication and wanted your HIV status to be treated as sensitive information and not visible your SCR, then your GP should respect your wishes and have your HIV status put in one of the sealed and locked electronic envelopes, not visible on the SCR.
If your HIV status is put in a sealed envelope this will show up, but the doctor treating you will have to ask your permission to open it.
I was also told by the SCR information line that you could have a SCR created and limit access to only the GP surgery (which seemed a bit pointless) or your can simply opt out.
If you are unsure about what to do: you can opt out now and opt back in later, or you can opt out later providing that the SCR has not been accessed.
In the rush to get the scheme running nationally you might find as I did, that your GP practice is saying ‘its either opt in or opt out’ this is not the case and you should challenge this and refer them back to their PCT for guidance.
The SCR is seen by some as a step towards an electronic patient database, that would not protect the patient confidentiality that HIV-positive people have come to expect. I was told by my HIV clinic that they have no plans to use these records.
According to the Researchers at University College, London: there has been a low take up in using the SCR records in secondary care settings. However, they have been accessed more often in after-hours services like accident and emergency.
It is in this instance that the SCR may become a life saving tool, especially if you have experienced a bad reaction to a particular medicine.
I have done my best to present this information as accurately as possible and any feedback would be appreciated.
If you want to opt out go to www.nhscarerecords.nhs.uk and download the – opt out form – and take it into your GP surgery. Call up a week later and ask for written conformation.
An interesting blog I found on SCRs definitely worth a read: www.computerweekly.com
Go to the NAT website and download ‘Confidentiality in Healthcare for People Living with HIV’ www.nat.org.uk