FAQs

Why is data sharing a good idea?

It allows different NHS professionals to see information about a patient.

Sharing information means that patients don’t have to retell their story time and time again. Sharing information between mental and physical health services improves care. It also helps to reduce stigma around mental illness.

Most patients expect that different NHS care providers can already see each other’s information and are surprised when this doesn’t happen.

How does SystmOne support data sharing?

SystmOne is a national UK system. One patient may see lots of care providers (e.g. their GP, NHS 111, district nurse, smoking clinic, DHCFT mental health service and DCHS.)

Information is recorded by every organisation providing care to the patient. SystmOne has a ‘common pool’ of data for each patient (termed the shared record).

At every organisation (unit), patients can decide:

  • Share in? This means: my organisation can look in the pool. ‘In’ means ‘into my organisation’
  • Share out? This means: put data from my organisation into the pool. ‘Out’ means ‘out of my organisation’.

For example:

  • GP shares in. This means that the GP can see information in the pool - but information will only be in the pool from other organisations that are ‘sharing out’.
  • GP shares out. This means that the GP puts information into the pool, so (for example) NHS 111 can see GP information - but only if the patient has also let NHS 111 ‘share in’.

When will SystmOne ask about consent?

When it doesn’t know the patient’s preferences for Derbyshire Healthcare. 

How should I ask the patient about their data sharing preferences?

A fairly full explanation (assuming their GP uses SystmOne):

  • Share in: “Is it OK if we see information recorded about you by other organisations using SystmOne, such as your GP? We’ll only be able to see information from organisations that you’ve already allowed to share your information.
  • Share out: “Is it OK if we share information that we record about you with other organisations using SystmOne, such as your GP? Each NHS organisation that cares for you will ask if they can see the information we record about you."

A very basic version, for patients who might have difficulty understanding the full explanation (bearing in mind that GP sharing is usually the most important clinically):

  • Share in: “Is it OK if we look at your doctor’s (GP’s) notes?
  • Share out: “Is it OK if your doctor (GP) looks at our notes?”

We suggest that you ask about sharing in first, then sharing out. (That’s not the order on the screen, but it follows the sequence in which we provide care: we collect information first, then we make recommendations and decisions and tell other people.)

This conversation should also be revisited with patients/service users, either at review or when they are re- referred into our services.

If the patient asks for advice, what should I suggest?

Say “yes” to sharing in and sharing out. This is likely to bring them the best and safest NHS care.

If the patient changes their mind, can I get back to the ‘sharing’ screen?

Yes. Find ‘Record Sharing’ in the patient’s Administrative Tree. Right-click it and click ‘Record Sharing’ again.

What can I say if a patient is anxious about their data being sold or shared irresponsibly?

You could say:

"Keeping patient data safe is a priority for us at Derbyshire Healthcare. All the people who work with you treat your information with respect and have to attend training every year to make sure they understand how important this is.

TPP (the providers of SystmOne) also make it a priority to provide strong security and use strict procedures and security features in accordance with best industry practice and standards."

What does ‘Consent not asked’ mean?

If you’ve not asked the patient, or they don’t have mental capacity to make this decision right now, then you have to record whether to share in (‘view shared record’) or not, and whether to share out (‘share record’) or not. If you say no, that’s the end of the questions. If you say yes, you have to say why (e.g. by policy, or because the patient lacks capacity and you are making a best-interests decision).

When I open a patient’s record, I can see their GP’s notes. Is that OK?

Yes. That means that the patient has previously agreed to share ‘out’ from the GP, and ‘in’ to DHCFT. Otherwise, the computer wouldn’t let you see this information.

When a patient says ‘share out’, does this mean that anyone can see their information?

No, only people who are NHS professionals involved in that patient’s care, and who are working at an organisation for which the patient has chosen ‘share in’. That’s not just anyone.

What happens if we record the preferences wrong?

If we set ‘share in’ but the patient didn’t want this, you (a NHS professional looking after the patient) will see data from other parts of the NHS that they didn’t want DHCFT to see, as long as they also permitted ‘share out’ from the other part of the NHS in question.

If we set ‘share out’ but the patient didn’t want this, other NHS professionals looking after them may see DHCFT data against the patient’s wishes, as long as they also permitted ‘share in’ to the other part of the NHS.

If we set ‘don’t share in’ but the patient wanted us to, you may miss important clinical information (and the patient might assume you had access to it and therefore not mention it). DHCFT teams might also miss information from other parts of DHCFT.

If we set ‘don’t share out’ but the patient wanted us to share, other NHS professionals may be unaware of important clinical information from DHCFT (and the patient might assume they know). DHCFT teams might also miss information from other parts of DHCFT.

None of these things are ideal. We don’t want to get this wrong.

If the patient has said no to sharing, or hasn’t been asked, are there exceptional circumstances in which information can be shared?

Yes. In an emergency, if the patient lacks capacity, you may need to retrieve clinical information in their best interests, particularly if the situation is life-threatening. There is a consent override in SystmOne for this situation. (It’s triggered by the person doing the asking. It says: ‘just fetch it!’)

Sometimes you might provide information in emergencies in other ways - for example, if another NHS professional phones you up, proves their identity, and explains that they have an unconscious patient of yours in a life-threatening situation. Think, act, and document your actions.

There are other situations where information can legally be shared without consent - e.g. by court order, to prevent significant harm to a child, if there is immediate serious risk to someone, etc. Having SystmOne doesn’t change any of this. See DHCFT's standard Information Governance rules.

How complicated can it get?

Here’s an advanced example to test your understanding!

“I want my GP to see my smoking cessation clinic notes, but the smoking clinic shouldn’t see my GP notes.”

The GP should set ‘share in’ (i.e. the GP looks at the ‘pool’). The smoking clinic should set ‘share out’ (the smoking clinic puts things into the pool). (For now, the other settings can be anything except ‘GP share out’.)

“I also want DHCFT to see my GP details.”

GP: share out (put GP details into the pool). (Smoking clinic must now be ‘don’t share in’ or they will see the GP details.) DHCFT: share in (look at the pool).

“I want my GP to see my DHCFT notes.”

DHCFT: share out (put DHCFT details into the pool). (GP is already ‘share in’.)

“I want my smoking clinic to see my DHCFT notes (but still not my GP notes).”

Sorry, now it’s too complicated. SystmOne doesn’t support this. There’s only one ‘pool’ (shared record); if the GP and DHCFT are both putting information in, then other organisations can’t be restricted to see only part of the ‘pool’.