Should all patients have easy access to their notes?

In the next idea from ‘Let’s talk cancer’ we look at how we can give patients the information they need.

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.

8 thoughts on “Should all patients have easy access to their notes?

  1. Surely access to records should be about personal choice. I wanted as much info as possible and access to my pathology report enabled me to make an informed decision about the next stage of my treatment, something that wouldn’t have happened under the time constraints of a brief consultation with a medical professional (this led to a different course of treatment that had been planned).

  2. Wales is miles behind other countries in its development of electronic health records (especially on nursing) which could provide a solution. There is now an agreed UK standard for the content of records – if only it were implemented!

  3. Of course patients should have access to their notes but at present different parts of the health service frequently do not have adequate access even within the same institution. I speak from direct and recent experience having yesterday noticed that I had been prescribed an antibiotic that I was allergic to.It is ridiculous that patients notes are largely on paper almost two decades after most of the developed world has held records electronically. Yes that poses problems of confidentiality and security but then so does online banking or insurance.
    For the last seven years I have worked for a coding and data organisation which is now contracted to the English NHS. The best idea I have heard on ensuring patient data is secure is that patients should own their data. Information held electronically can be released to different parts of the health service as and when needed. In effect the information travels with the patient.
    Of course there are some technical obstacles to overcome but there is also a cultural obstacle. A health service where the patient is the gatekeeper is rather different to one where a GP or consultant is.

  4. Would like to see all dental records available to the individual treated and to be available to the Registrar of Deaths as a closing package
    My specific interest is with the amount of X rays being given to individuals during their lifetime and the frequency of these in treatment in later years of life

  5. Whilst I agree in principle that patients should have access to their notes, I worry that these same notes may be misunderstood or misinterpreted by the self same patients who are after all not medics. It could lead to time wasting arguments about why and what should be done.
    There are several concerns about electronic records. The main one is that private big data companies and especially insurance companies could access this information and use it to deny insurance or as an excuse to bump up premiums or bombard you with targeted mailed offers for this and that. Insurance companies already evaluate by postcode, income, credit search and demographic so giving them even more personal info is just the final straw. Another concern is that it adds another layer of bureaucracy because someone has to access the computers and ‘data entry’ the notes. Although most doctors may be able to do this themselves I expect that most will be done by ‘secretaries’ of some sort or another. These ‘data entry’ people will often be non medical, non professional and possibly part time – ie the cheapest possible. The temptations and opportunities to ‘leak’ information is clear.
    Another concern is the huge amount of labour and expense required to convert historical/legacy paper based data into digital format. Insurance and legal companies have already faced this issue and it has been a very costly 10-15 year project even for small companies and brokers. Doing this for the NHS may take at least a generation.
    It should also be borne in mind that data can be lost, deleted, corrupted and so on. I still have my old dog-eared photo albums which don’t need a computer to view. I have many CDs of photos and I sometimes wonder how long before I can’t access these because technology has moved on. Perhaps everything should be moved to ‘the cloud’ but that is a whole new ball game.

  6. In other countries where I have lived: United States, France, Australia, patient records and test results were automatically available to the patient, no questions asked. Nothing to do with electronic records; paper copies were freely available. Arguments about cost of photo-copying are risible. There is a rotten paternalistic attitude in the NHS which supposes patients are idiots who can’t be trusted to know what is happening to them. It is frankly outrageous. it is the downside to having a free public service. No-one would treat customers like that but medics think they are doing us a favour and we are lucky to get whatever they deign to do or to divulge. Records and test results belong to the people they refer to and there shouldn’t be any question about it.

  7. Mr Tredwyn says.. ‘there is a rotten paternalistic attitude in the NHS which supposes patients are idiots’. Well the truth is that some (quite alot) of them are (idiots). Also, some medics I have had the misfortune to have been exposed to have been ‘paternalistic’, arrogant and even incompetent.. However, at some point there must be trust between the two parties and trust in the trained medical judgement. I consider myself a reasonably educated person but faced with a list of ‘records and results’ I hope (and pray) that the medic in front of me can make better sense of it than I could no matter how many times I googled it.
    That said I tend to agree with Mr Tredwyn in many of the things he says on this site.

  8. Fundamentally, this is an issue about patient control. The system should be in place and an individual should be able to access notes ‘as and when’ – however, this should be in the gift of the individual. Some people may not wish to access the notes and will just want to know the basics about their care.

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