Should all patients have easy access to their notes?

This week on Click on Wales we’re featuring a series of practitioner responses to ideas to improve cancer care in Wales, crowdsourced between June and July 2015 through the IWA’s Let’s talk cancer project. Over 6 weeks patients and their carers posted their idea for how to make things better for those affected by cancer in Wales. In all we had around 100 ideas submitted. We’ve taken these ideas to a panel of practitioners who have given their responses to the 12 ideas we shortlisted using voting on the website. Here’s what they’ve said. We’ll be using the responses to help inform our final report which we’ll publish in September ahead of a conference on the 24th September at the Pierhead Building, Cardiff.

Patient Notes should be made available to all suggested by Annie Mullholland

In Wales patients don’t automatically receive their patient notes. Access to patient notes is by no means consistent or clear. I discovered the Welsh Patient Rights posted on the Citizen’s Advice website and one of these is that patients have the right to receive a copy of their notes.

Before leaving the Welsh NHS I phoned my cancer centre to ask for my Patient Notes. I was told I had to write a letter asking for them. This may well be a barrier for some. In due course I received a letter in response telling me I could be charged £50 for photocopying. This could be an insurmountable barrier for some patients. I did finally receive my Patient Notes and no charge was made.

If access to Patient Notes is a Patient Right it should be a right for all without cost or condition.

Some patients in Wales tell me their notes would be full of gobbledygook. I receive a note of every decision, every meeting and all letters sent to my GP.

I have direct experience of the benefits of such a system. When my former hospital made an ‘admin error’ and forgot to order one of the dual agent chemotherapies I should have received at first line, had I received my patient notes I could have dealt with the error before it was too late to rectify.

I never did receive the gold-standard chemotherapy for ovarian cancer in Wales because by the time the error was discovered, during my subsequent visit to the hospital, the locum oncologist told me there were no more ‘places’ left to administer this infusion for several months and that it would be bad for me to undergo chemotherapy over what would then be a 9 month period.

Practitioner responses:

Gareth Thomas, Lecturer / Diagnostic Radiography, Vice-President –  Society & College of Radiographers:

The amount and volume of admin involved with this is massive hence why there is a cost involved

Stephen Thomas, Patient Representative:

I suspect problems in access to our notes is more a problem of the different ways this information is stored. The challenge is how to collate efficiently and securely our details into one place.

Phil White (GP):

“My Health On Line” is being rolled out and I believe that this can give access to personal records for those signed up to it. With patients coming to the surgery to look at their notes the problem often arises that they need an experienced staff member to explain the notes.

Malcolm Mason, Professor of Clinical Oncology:

1. Firstly, I am absolutely supportive of patients having access to their clinical records. There is, of course, the complexity of the patient who does not want to know all the details of their cancer (and not uncommonly this is the case), and clinical records will often contain blunt information about extent of disease or prognosis. However, there is a distinction between patients being able to access their records, and patients being FORCED to access their records, and they should have the right not to do so.

2. Tied in with this, there is the practical issue of records being held in multiple formats, whether paper or electronic, and if the later, of those databases being able to talk tom each other. In an ideal world, we should have a single, universal, electronic patient record, but we are a very long way away from that. I do think it is a goal that we should aspire to if we can. In the meantime, a patient wanting his or her records might have to get hold of multiple, parallel sets of data from different bits of the NHS.

3. Among many other things, if patients have their own records, it should facilitate seeking second or third opinions, and make life easier for doctors who are asked to see such patients.

4. On the horizon will be another complexity – biological data such as gene mutations in the records, some of which might be really important and have implications for families, etc, or implications for treatment. However, we are increasingly recognising gene ‘variations of uncertain significance’, and this will add to the burden of uncertainties that a cancer patient may face.

Annmarie Nelson, Scientific Director Marie Curie Palliative Care Research:

Agree with Malcolm – many ethical issues to consider. There are systems currently in research development in the UK, and in use in the US. I think these hold quite basic, objective information using forms for results, letters etc. and appointment systems. The clinicians’ notes are probably not included.

What are your views on this idea? How could patients be given easy access to their notes? We want to hear what you think in the comment section below.