Primary Care Survey 2016 It is important to me to be able to directly access my own health record and be able to share it with anyone I think relevant

This paper includes comment on:  In favour of patient access to their records (boxed in green)  Not in favour of patient access to their records (boxed in red)  Neutral or not sure about patient access to their records (boxed in blue)

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In favour of patient access to records

If one has access to their own records then they would have the ability to share it with others -- relevant (and nonrelevant). The sharing might not be electronic but nothing would prevent them from telling others what their records hold. As an 'informed' patient I should like to be able to access my records but not everyone would want this. All information held about me and my health should be accessible by me at any time. I should be given full access to read and share with whom I wish to. So why then quite often when you request your blood result from surgery you are not given the full result or denied even knowing this. If GP busy which is normally the case why can't the front desk give you result? It’s my result after all. I wanted copies of my blood tests (hypothyroidism) and I had to explain why and now feel there is a black mark next to my name, as I wanted to show them to an 'alternative' doctor that specialises in thyroid conditions. I wanted to try a different approach but my Dr was extremely dismissive and not supportive in any way. Every patient should if they ask have access to their own medical records It is important to me to have regular access to my records to prevent any further cock ups and delays in a future care and treatment. DEFINETLY IMPORTANT FOR A PATIENT TO SEE ALL NOTES, HOSPITAL REFERENCES, REFERRING TO HIS OWN PRIVATE HEALTH - IT DOES CONCERN HIM!………. It is most frustrating when the only way one can obtain the results of tests is by wasting the Dr's time with an unnecessary visit. Results should be readily available to patients - after all, it is their body. Whose health is it? Surely the medical profession are there as advisors and support agents, but ultimately it is THE PATIENT's HEALTH. I know I have disagreed on the last 5 questions as I think the security issue is too great although I would like to be able to have access to my medical records providing this would not affect the accuracy of the notes and I would be able to understand them. I should absolutely have 100% access to my own health records and to anyone I am a parent with care, registered guardian or registered carer of. I should be able to have altered or deleted inaccuracies in my health record if I feel they are incorrect. No other person should be able to alter or delete information on my personal health record without my prior permission. My record, my choice! It is important to me to be able to directly access my own health record and be able to share it with anyone I choose. It is my choice. However, I do see problems where the patient is unable to make that choice for themselves and in cases of abuse which would need extra care on the part of the GP. As I am under a consultant at RDE I have access to my records and results there through Patient View on the internet. Page 2 of 5

Access my information free of charge online. It my health and I want to be in control nit someone who doesn't really know me. If it means that I receive relevant and up-to-date treatment for my condition I do not mind holding my own medical records, otherwise, at present (being healthy) it does not bother me. I have had a few things and I can't afford to access my health records which I think is wrong. I am not happy to have my medical records shared with other agencies because I know that they are not accurate. I am happy to hold my records and share them with other agencies as required.

Against patient access to records In a rural community, we have poor internet links as well as poor public transport. To have to depend on internet access to our GP is a retrograde step in an area like ours. Q6 & Q7: Heavily loaded questions! The libertarians will demand this regardless of common sense, as is all too usual. Realistically, there's little point in showering everyone with data that very few can employ usefully. Better to use the 'filter' of access limited to GP & Professional Services only. I think access to my medical record should only be available at my GP surgery and upon proof of ID and should be by a non-editable monitor in a private room and accessible only by a password issued at the reception after proof of ID. Many elderly people do not own or would be able to use a computer. Decisions relating to health issues should, in my opinion, be the sole province of the trained medical professional Not sure whether the ambulance service need full access e.g when I had a smear test!!!! Privacy of health issues is important to me. I don’t want others knowing my health business. i think if i know too much about my own health failings might cause me worry and odd possible hypochondriac tendency to enlarge. The 'sharing' aspect is potentially dangerous for those who are unable to make the correct decisions. Sounds like another waste of money. Most people just want to be cared for and treated they don't need access to their records that doesn't save lives. If patients had access to their medical records, they may waste GP's time by querying what has been put on the system It seems to me that a little bit of knowledge/info can be dangerous and anxiety producing. It may be fine to have access to your own health records and to share them - but what if you're in an abusive relationship. This could remove all privacy. System seems to work correctly at present and see no reason why I would want access. I don't think that ensuring patients have access to their own records is particularly important. IT and confidentiality DO NOT MIX. A downward spiral. I know, I've experienced it! Consequently I have lock down on my record. Page 3 of 5

Don't think I need to access my records at the time. When needed I will ask. Some people may take a dislike to what in their records written year ago where they can be quite direct wrote. Slightly concerned about security and being forced to release details if they are available to be shared insurance companies etc will not do anything without seeing them and if you do not release them there will be an assumption they are bad? Giving patients access to their records can and no doubt will increase work load questions for health professionals. Don't think patients should be able to share their info with anyone they choose; this could lead to information be shared with unscrupulous people. I am aware of my own health and don't need access to the record. I don't want it shared unless essential. Consultants and anyone else needing my records can get them from you so I would not feel the need to have access myself.

Neutral/not sure about patient access to records I am not overly concerned by accessing my health record, although I would find it interesting (not necessary). It's definitely important to agree with what goes on your own patient record. Ideal to have access to my own records, but can see how at times and for some people this would not be ideal. I think that it could be useful to access my own health record and in my profession it would be useful for individuals to be able to provide that information about themselves, however I am not certain that this would be a safe option for some members of the public. My GP should have access, the rest should have it electronically released to them EITHER by my GP or by me or an appointee. I think access to health records should be strictly controlled. Choosing to allow patients to share their own health record is a tricky one. There are many vulnerable individuals out there who are not necessarily able to make an informed decision in this respect. If this were to be made available, the patients regular GP should counter agree such disclosure to ensure the patients well-being and safety is not compromised unnecessarily. It is important to be able to access my own health records, but by written request, the GP surgery is busy enough and doesn't need to inundated. If a patient can access their own record, what is recorded by health professional will be modified accordingly. Access to health records is too restrictive. I agree with a single record, however this needs to be held by patients with caution as those who are vulnerable may need more support to keep this safe and it may open them up to abuse.

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Having paid to access my records at my previous doctors, I am horrified at the total inaccurate and sloppy record keeping that existed. No structure to the report, ANY OLD RUBBISH put in repeatedly, ignoring my requests for help, advice and treatment. I've never had access or asked for copies of my medical records but it could prove useful as long as it's factual and not used as a witch hunt on professionals !!! I share all my letters and reports, I don't need to hold a massive file. As I am a technophobe it is difficult for me to answer these questions. If I was computer literate I am sure it would be most useful at times to be able to access my health records. Again, this depends on the quality of the IT. I can see where this is going, and it needs to be joined-up. We have an elderly population who don't have access to technology or easy access to transport. The trouble with technology is that generations older than me are largely unfamiliar and/or suspicious of it. As we are facing an aging population going too far down the technology route may cause problems. However it can be of great benefit to the younger generation with intelligent phones etc. Security is however a concern. I don't know why I'd want to share it myself with other agencies! Records would need to be strictly impersonal. They could be frightening and convey unwelcome information if a patient had not been told about it by their doctor. I would like to think that if medical records were to be freely made available to patients, they would be as comprehensive and honest as possible and that GPs or other medical staff would not be inhibited by this. My only comment is I would not like to compromise my confidentiality, it's ok for official medical bodies, but there should be a line drawn at carers and also need to identify carers ie; next of kin may be acceptable but not carers from community bodies. I really don't care about my records as I am not unwell so it wouldn't give me any more information.

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