On 26th July 2017, patients came to learn about how to sign up for Records Access and Understanding. Here is what happened. Scroll below, to see Frequently Asked Questions (FAQs).
Dr Amir Hannan and Shafia Begum talk in English and translated into Bangali
Dr Hannan and Shafia Begum go through the explicit consent questionnaire asking the audience how they would answer the questions and also explain some of the answers and what they mean. The questionnaire gives the patient / carer the opportunity to understand what they are signing up for and what issues to consider. It facilitates a discussion in case there are any issues that need further clarification. You can register on line now if you are a patient of ours Get Access Now and see further information to help you understand more.
Dr Hannan and Shafia Begum show screenshots of what patients can do via a smartphone including booking appointments online, ordering repeat prescriptions, send secure messages and view their medical records.
Listen to the Questions and Answers following the event including questions from a patients who had never heard that patients could have access to their records and a Bengali patient who has very poor English but still was able to understand what was discussed and able to ask the questions we all want answering! If she can do it then we can all do it!
Listen to David Dickinson talk about his experience when he suddenly had to call an ambulance and how he was able to share his electronic health record with the doctor in A&E.
Fawzhiah Haque is a college student who did some work experience in the surgery and after 2 days came to the meeting and explained in her own words why she thinks everybody should have Records Access and Understanding. Listen to what she says and see if you agree!
We would like to thank everybody who came to help others understand why and share experiences and what matters.
Real-life example of actual patients completing the explicit consent questionnaire
The examples below are real-life patients who have kindly agreed to be videoed for the purposes of informing and educating the audience. All were asked during the conulstation if they would like full access to their GP electronic health records and understanding too. Dr Hannan has 2 screens in front of him. The first is the clinical system and on the right is the Explicit Consent Questionnaire which he can be seen going through. The clinical system had the test patient on it (so no patient identifiable data). During the discussion he used examples such as “your family may be concerned about the amount of alcohol you drink”. This is purely for illustrative purposes and does not relate to the people you see but helps them and yourself to understand what the question means and why. We would like to thank all the patients for allowig us to share their experience and what their thoughts were.
Explicit Consent Questionnaire done in the consulting room in 2 minutes.
Explicit questionnaire done in 2 minutes with the patient during a telephone consultation.
This video shows a couple going through the consent process. HIs wife is sat next to him and is able to help answer the questions together. It’s a great example of shared decision making where we all work through the questions and what they may mean. A couple of minutes spent now could save a lot of time and bother later!
In this example both people listen to the questions. Whilst the wife is asked questions, the husband listens and then afterwards is asked if he would like to go through the questions himself. He chooses not to and is happy with the answers his wife gives. As a GP, I know both have listened and learned. They work together as a team so why not work with them. It’s another great example of partnership working.
Please come back later to see some more examples of questionanires completed. In the above examples, both patients wanted clarification on what the questions meant. We will show you examples where the questionaire was done in just over 2 minutes when all answers came without needing clarification. We will also show an example where the questionnaire was done over the phone with a patient too.
Please note: a safety feature for the patient is that even if the questionnaire has been done over the phone, the PIN NUMBERS are given to the patient in person. This is true whether the patient is internet savvy or not. If they are not internet savvy then they can choose to give their pin numbers to those they trust who can register them. Patients should always remain in control.
Questions and Answers and further links
I don’t know what Records Access means. How can I find out?
I am an anxious patient who can get panicky easily. Is it OK for me to have access to my electronic health records?
Everybody has a right to access their medical records unless there is a good reason not to. This is enshrined in law via the Data Protection Act. However whilst there is a legal way to access your records, we at Haughton Thornley Medical Centres feel it is your moral right to be able to view your records if you so wish. Over 99% of our anxious and depressed patients have signed up for records access and understanding. We have been doing this over 13 years and learned a lot about how to do this safely. If you are an anxious patient then you could still have access to your electronic health records. However we recommend you do not view your records on a Friday night when the surgery closes but rather early in the morning before surgery opens so that if you need to speak to a doctor or the practice, you do not have to wait too long. This simple advice can prevent problems later. If you are unsure then you do not have to view your records (even though you have signed up for it) and choose to wait to see your doctor or nurse or you can choose to let somebody you trust and who cares for you to view your records for you. There are always other options available.
My parents are elderly and have never been on the internet. Can they get access to their electronic health records?
We at Haughton Thornley Medical Centres feel everybody should be able to access their records or enable their carers to view their records (with their permission). In 2017, over 41% of all adults over 75 years of age currently are online according to the Office for National Statistics. We are seeing many elderly people getting smartphones for the first time (or families are giving them one of theirs when they update their own phones). They can then use the smartphone to keep in touch by using Skype or seeing photos of their children and grandchildren too. It’s a great way of keeping in touch despite the busy lives we all lead. Even if your parents do not have access to the internet, if you give them your email address then they can complete the questionnaire with the doctor or nurse (or yourself as a carer) and then they may allow you to view their records for them. We have seen many families keep in touch with their parents this way and this can be from anywhere in the world. They love the fact they can keep in touch, order prescriptions for them, book appointments and send secure messages too.
Why do patients need Records Access and Understanding ?
You have a right to view your electronic health records most of the time. Dr Hannan wrote in the Guardian to explain why patients like you need this in 2011. You can also see links that we have signposted to help understand what some of the terms in the article mean! (Just like we have this website to help you understand what various health issues mean for you and what you can do too to help yourself as well). The system has not been great in enabling patients to learn what you can do partly because until recently this was difficult to do practically. Now that over 89% of families in the UK have access to the internet, this changes how we engage with patients and many more people like yourself can and should be able to view your own records and understand them too. The more you can educate yourself about your health, the more you can understand what is going on and enable others to help you too. This can lead to better outcomes for you too – the kind of things that you want out of life e.g. a better quality of life, live longer and become less burdensome on others. Often as a patient you know more about what is happening than those treating you. So it makes sense for you to have access to your records and understanding too.
Why do I have to do a questionnaire first before I can get access to my full GP electronic health records?
The questionnaire gives you the opportunity to be aware of some of the key issues that matter before deciding on getting full access to your electronic health records. It is important you are aware of the challenges as well as the benefits too. We do provide you with information you can read but often it is easier and safer to simply answer the questions. If you need to find out more then look at the information we provide or speak to your doctor or nurse about it. In our experience, most people have completed the questionnaire when talking to their clinician (who can also explain what it means) although you can go ahead and fill it out on your own. It can take less than 2 minutes to complete the questionnaire which helps you to think about the key issues before you sign up. We take the pain away from this process by quickly getting you to decide and determine what is important for you. The doctors and nurses are very busy and hopefully most of your answers will have been answered by watching the videos we have posted here and information you can find on the website. We think all healthcare organisations should take a similar approach and have described this at many different fora.
How can I log into my electronic health record using an app on my smartphone or via my computer?
You can access your full GP electronic health records via “Patient Access” or “Evergreen life”. There are some small differences between both versions. You can try either to see what is best for you.
We recommend using a smartphone as you carry this with you everywhere you go and it means you can use it if you fall ill and you are away from home. It is easier to view your records via a computer though when you are at home and wanting to see details as the screen is much bigger.
I have forgotten my passwords. What do I need to do ?
Click here to find out how to reset your passwords.
What are benefits for patients, carers, staff and the practice / organisations in the NHS?
See the Case Study which explains our experience including why this helps to support patients just like you to become experts in their own health. You can be reminded what your doctor or nurse has said about you, check things for yourself, see what the surgery has sad will do and what you will do and check everything is in order. Why? After all it is your diabetes, heart disease, depression or back pain. If you can see what your doctor or nurse thinks and you can see the results of any tests and can monitor your health to see if things are improving and then share what you know with others then you are the one who benefits the most!
What do Haughton Thornley Medical Centres share with patients (and carers with explicit consent)
We share the full GP electronic health record with the patient once you have completed the questionnaire and we have completed checks on your records to ensure we can responsibly share this with you. Once this has been granted you can log into your record via the internet or a smartphone and see your problems list, letters, test results and consultations including the free text what your doctor or nurse has written in the notes for you. This is done in a responsible manner and in your best interests. There are however times when we may not share the record with you. This is because legally the Data Protection Act protects you from harm and we are legally obliged to follow this. However this is a very rare occurrence in our experience and very few people have been denied access to their records (or parts of their electronic health record). Your previous records that were on paper are generally not attached to the electronic health record although they have been summarised. We have had an IT system in the practice since 2000 and from about 2005 all record keeping was almost exclusively done on the computer. So if you have been a patient of ours since then then you should be able to see most information. In our experience most people’s needs are met by seeing the information in your records in the last 10 years or so.
Why does Haughton Thornley Medical Centres share the full GP electronic health records with patients?
We at Haughton Thornley Medical Centres have always felt from the first day we started offering access to the records that all information that is kept electronically about you the patient should be responsibly shared with you. This may mean there are times when you may not be given access but we will inform you why. We also think it is important of for you to be able to view your full electronic health record and understand what this means so that we can build a Partnership Of Trust. Trust is built when you feel we are sharing everything with you responsibly. The opposite is also true – if we do not share everything with you when we could then you may legitimately ask why as this can create distrust.
How many other patients have got access to their full GP electronic health records and understanding too?
Currently as of July 2017, over 7100 patients have got full access to their GP electronic health records (59% of the whole patient population). Certain groups of people are much more likely to have signed up including people who suffer with anxiety or depression, people with diabetes, low back pain, carers, people who have regular blood tests or investigations, pregnant women. Some patients are less likely to have including people with learning disability (41%) or Chronic Kidney Disease (42%). However this compares very favourably with the national picture where only 1% have access to their records and that is not even full access (NHS Digital). We have been leaders in this field now for over 13 years and continue to shine a spotlight on how to do this safely.
How can patients and carers get the best from access to their records and understanding?
We recommend patients should sign up for access to their electronic health records and gain a better understanding too.. Once they receive an email confirming they have got access, they should log into their record and go through each part of the record. See how it works and also what information has been recorded about you. Get a blank sheet of paper and write down anything that you think is missing or in error. Write the date when it was recorded and what the problem is. Hand the paper into the surgery. (Do not send it by email as email is not a secure method of communication). Hopefully you will not have found any errors or information that is missing, You may find spelling mistakes. We are only human and therefore please forgive us if you see errors like this. But if you see big errors then tell us because we want your record to be correct. You may need to provide us with “proof” such as a letter that tells us what it should be instead. You may also need to book an appointment with the doctor to discuss things. Sometimes you may disagree with what the doctor or nurse has written. Please tell us if you disagree so that we can talk about it and may be even note down your view too. This is a partnership of trust we want to build and for that there must be mutual respect for each other. As much as possible we want to make sure you are happy with the care you are receiving.
Once you have looked at your record for the first time then we recommend you look at the practice website to gain a better understanding of your health. The main website provides much more information and includes a patient control panel down the left hand side with many more links to trusted information. The more you look, the more you can learn and educate yourself and your loved ones. Tell people about what you learn so that they can learn too. We want everybody to know more.
Your mobile phone may have an In Case of Emergency (ICE) app or if you have an iPhone you can add emergency medical information on the Medical ID Emergency card which can be accessed via the health app even if your phone is locked. (You decide what a stranger could access in an emergency so the control always remains with you. This is part of iOS). Some patients store their personal passwords and for their loved ones on their mobile phone using a password app – have a look at your app store for one. Think about what you think is best for you. If you are unsure then talk to your GP or nurse about this.
Everytime you want to book an appointment at the surgery or any other healthcare establishment e.g. hospital, Out of Hours, A&E, take a look at your electronic health record to check if there is anything relevant that may help you. Also look at information on the practice website to see if you can gain a better understanding too, Also after you have seen your doctor or nurse in the surgery then check your record afterwards too in order to see what has been agreed and whether you think everything has been captured. It is better to get this right as soon as you have had your consultation rather than afterwards.
Finally tell your family and friends and inform them too. Many people are now on social media – Facebook, twitter, linkedin etc. Why don’t you post something on there about what you can do. (Please do not post any personal information about your health – it is not necessary often and we want you to stay safe at all times).
I have been asked if others can view my electronic health records. Isn’t that enough? Why do I need to be able to view my records too?
Most care is delivered at home by you and your loved ones. You need to be able to see what your doctor or nurse has written about you and also to check if referrals have been done and when results come back. You can also check if there are errors in the record or information that is missing. Ideally you should do this so that you have seen your own information before you present to A&E, Out of Hours or fall ill and then are asked if others can see your record too. Please remember also that currently data sharing agreements that exist with the GP surgery and others are usually only with local organisations and not across the whole of the NHS or even neighbouring areas in other hospitals. We therefore recommend all patients should have access to their full GP electronic health record whether the practice shares your record with others or not. In an urgent or emergency situation, by enabling your record to be shared with others, they will be able to view your records with your permission whether you have signed up for access to your records or not and whether you have remembered your passwords or not. We feel your record should be shared with you as well as with those who care for you with your permission. This is why we have spent a lot of time and effort helping you to get access to your records and understanding too. We think everybody in the NHS (not just GP practices) should do this too and welcome the support and encouragement many others have given us for the stance we have taken.
What if I find errors in the record? What should I do?
If you find errors in your record then please click here to find out what to do next.
What if I find abbreviations in the record? How can I find out what they mean?
As a practice we have always recognised that it is not enough to just be able to read your electronic health records, you need to understand them too. That’s why we built the practice website www.htmc.co.uk to help patients understand their records. Here is a link to abbreviations you may find in your record. If you come across one that is not in the list then please inform us so that we can help you and update our list. We want everybody to benefit from what you learn too!
What else do Bengali patients and carers need to know about their own health and wellbeing?
Click here to learn more about specific resources we have gathered for Bengali patients to learn more about things specific to their needs. (Everybody else can also benefit from reading this as well because we all have similar problems too!)
I am not a patient of Haughton Thornley Medical Centres. How can I get access to my full GP electronic health records too?
GP practices are currently under massive pressure to deliver care. Currently there is no requirement for GP practices to enable you to see the full GP electronic health record beyond “coded data”. This means most patients in other practices are unable to see free text or letters and in some instances can only see data from a certain date onwards. The material you can see here has taken a lot of time and effort to produce with great help from members of Haughton Thornley Patient Participation Group, our staff, our practice management team and our clinicians too. We are also grateful to Glen Griffiths who helped us to co-design and build the award-winning practice-based web portal www.htmc.co.uk which is central to supporting our patients and staff. These are resources we have used to build the knowledge base and we have spent time, money and our staff in order to deliver this. This has not been easy. We are very grateful to everybody who has helped us. If you are in a practice that currently does not offer the full access to your GP electronic health records then please show them what we are doing including our explicit consent process and ask if they would like to consider trying to do what we do too. We are keen to share our knowledge and experience with many others around the UK and beyond. Already a wide number of GP practices are doing similar things to ourselves and we can help them to learn more if they wish. Please ask them to contact us and we can try to help.
I still have further questions. Who can I contact?
Please send an email to [email protected] and we will endeavour to get back in touch with you.