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Thanks for your question. Different NHS health care providers may have different platforms and systems that they use for their patient records. As such, the way patients can view their own health records will also differ between these Trusts. 

However, Trusts increasingly recognise that patients may be seen by a number of different healthcare providers, and so recognise the need for platforms with “interoperability” – the ability to share information across platforms and share patient information among clinicians. 

There are a number of ways that clinicians at other Trusts can access your information on the Epic platform:

• EpicCareLink can be used by other healthcare providers who use Epic platforms. This shares real time information with other Epic Trusts, including a patient’s test results, clinic visits and hospital stays. 
• Share Everywhere allows a patient to share your medical information with the people taking care of you, whether or not they use Epic platforms. Using the Patient Portal, you can generate a share code and provide it to the person you want to share their health data with – this could be your specialist at Imperial Healthcare, or a GP, a Physiotherapist, Nurse or other health provider. The health provider then enters the code and your date of birth on the Share Everywhere website to receive one-time, temporary access to your health information. The GP can also write a note back to The Royal Marsden to help keep us informed of the care they provided. 

All active patients at the Trust (which includes those attending for follow-up appointments) will be able to access the Patient Portal, even if you are no longer receiving treatment at the Trust. 

If you do not access the Patient Portal for a certain amount of time, your account may be temporarily deactivated for security and data protection purposes, however, if you want to reactivate your account in the future, you will be able to at any time, and all of your historic patient information will still be available to you.

Thank you for your question. Yes – we can confirm that you will be able to share your medical information with your GP using the “Share Everywhere” function. 

Share Everywhere allows a patient to share your medical information with the people taking care of you. Using the Patient Portal, you can generate a share code and provide it to the person you want to share their health data with – in this example your GP - but it could also be a Physiotherapist, Nurse or other health provider. 

The health provider (in this case your GP) then enters the code and your date of birth on the Share Everywhere website to receive one-time, temporary access to your health information. The GP can also write a note back to The Royal Marsden to help keep us informed of the care they provided.

Your GP will be able to see a subset of the same information that you can see in your own Patient Portal account. At this stage we are confirming exactly which information will be available for both patients themselves, and for healthcare providers through Share Everywhere. 

To ensure Share Everywhere is secure, your GP will only be able to use the share code once, and the code is only valid for up to 60 minutes. They must also know your date of birth. If they enter your date of birth incorrectly three times, the share code is invalidated. Once they log out of Share Everywhere, they cannot log in to see your information again unless you give them another share code. As an additional layer of protection, the share code redemption page is protected by reCAPTCHA.

Thank you for your feedback. As you have mentioned, we acknowledge a difficult balance between giving patients more access to their results in a transparent way, while also ensuring that they are not unduly alarmed by receiving results without having discussions with clinicians who can explain what the results mean for the individual. 

The Epic system is highly configurable, and we will be in control of what is shared with our patients. We are currently speaking to expert clinicians and patients about how to give access to the right information at the right time, and also looking at what other Trusts do, to ensure we hit the right balance, and do what is best for all of our patients. This will be governed through the Clinical Council, chaired by the Medical Director.

Most organisations tend to adopt a relatively cautious approach to sharing data at the point of go-live, as both patients and staff need to gain confidence and experience in how the system can best be used. Examples of the kinds of controls that exist, often at individual test level, include:

• Automatically providing results when available
• Adding a time delay on results (e.g. results for certain tests might be automatically made available after 10 days)
• Enabling clinicians to release individual results
• Restricting certain results from being made available to view through the Patient Portal 

We are still in the process of confirming what information will be available on the Patient Portal and when it will be made available. However, we can confirm that no medical information (such as results, scans) will be made available without approval being given by a clinician (they will not automatically become available).