Health care law professor, Jonathan Montgomery, chaired the expert group that oversaw the review of our Confidentiality guidance for doctors. Here, Jonathan reflects on his experience and the challenges of this project.
How did you help the GMC make sure doctors’ and patients’ voices were heard during the guidance review?
The main thing about this guidance review was that it was open and transparent from the beginning. It’s been as much of a bottom-up approach as we could have hoped for.
One of the things we spent quite a lot of time on was trying to work out whether there were groups of people we were unlikely to hear from through the standard GMC consultation channels.
This work is about doctors engaging with the community to make sure that what medicine offers is what the community wants to receive. It goes on in collaboration with patients, with other health professionals and with the community that’s being served.
I’d compliment the GMC on the intelligence with which they approached how to get to grips with different doctor and patient experiences and views, particularly those of seldom-heard groups.
What was the main challenge you faced as a group?
From my point of view, the main challenge for us was building a good understanding of patient expectations when it comes to confidentiality.
There are some areas where we found that the health service is already using data in ways that patients are unaware of – and not particularly comfortable with. For example, the NHS sometimes uses non-NHS staff to make preparation of letters more efficient. Some of the focus groups we spoke with demonstrated a bit of anxiety about this.
Yet, there were other areas where patient expectations run ahead of what the NHS is actually doing. Patients told us they shouldn’t have to keep telling their story to the health service. They expect key information to always be available to the people looking after them.
As a group, we used the principle of ‘no surprises’ as a guide. We didn’t want the public to feel they had somehow been taken advantage of. We had to think about the fact that they should either know exactly what their information was being used for or, at least, be pleasantly surprised if they discovered it later.
What was the most significant change in health care you had to grapple with?
We worked hard to deal with the implications of technological developments. Since the guidance was last updated in 2009, there’s been a significant shift away from using physical patient records, which were controlled by one doctor who made individual choices on whether to share information or not.
Now, records are held in IT systems and accessed electronically in many different places by lots of different people who need to contribute to the record, or use that information for a defined purpose. This isn’t new, but the scale of it has grown.
We had to think much more about where doctors fit in this complex information-holding system and keep reminding ourselves that doctors are not the only stakeholders in that process.
There’s still more to come. We’re not yet in a situation where patients routinely upload their vital signs through their smartphone or anything like that. But, we’ve definitely made a transition from the previous set of guidance into a more modern world.
How do you think the updated guidance will help doctors, patients and their loved ones?
We were informed by the enquiries doctors made to the GMC about confidentiality, so I hope we’ve at least begun to answer the questions that were problematic for them in the previous guidance. I also hope the updated guidance more accurately reflects the increasingly complex organisational contexts in which most doctors are working today.
In relation to patients, we hope the guidance is sufficiently well written and user friendly, so they can look at it and better understand what they can expect from their doctor.
I hope we have added some clarity to an area which both healthcare professionals and patients’ family and friends told us was particularly tricky: how can you have conversations to reassure people their loved one is getting the right care without breaching confidentiality?
We’ve given more advice on how doctors can have these discussions with families without overstepping the mark. What we’re aiming at is that families don’t experience a wall of silence from health professionals, while making sure these conversations don’t rob the patient of their right to privacy.
How are you going to support doctors to put the revised guidance into practice?
In terms of practical support for doctors, I know the GMC’s Standards team is currently working on case studies to help doctors apply the guidance to their practice. This is just one example of how publishing guidance is only part of the support the GMC gives to doctors in these circumstances.
The GMC’s role is a continuing one – it doesn’t somehow stop just because the guidance has been launched. It’s really important for the GMC to be outward-facing and work to promote awareness and understanding of the guidance and the ethical issues it covers.