Plain English Guide to Information Sharing

Joseph Waller, Director of XML Solutions

Phil Barrett, Programme Manager, Ripple Foundation

Dr. Tony Shannon, Clinical Director, Ripple Foundaiton

Our work with Ripple is aimed at supporting Health & Social Care. Our mission is aimed at;

Improving care to patients by supporting staff with better information and tools
Support the creation of an open integrated care record platform.

As we move Health and Social Care into the 21st Century, the need to improve care underpinned by better information sharing is paramount. For many health and social care professionals efforts around “information sharing” have become a real challenge. Central to that challenge has been the growing confusion about good practice in information governance, particularly when it comes to information sharing.  Our experience is that even the language is this field has become so overly complicated that is has become a barrier to progress in its own right.

With that in mind we wanted to delve deep into what is at issue here,  looking for some simple patterns to make this area a whole lot simpler, in essence a Plain English guide to Information Sharing. As we begin to explain our latest thinking on this, we want to give due credit to Joseph Waller director of XML Solutions whose “proposed consent model” we have deliberately reviewed, reused and hopefully improved. We’ll be working with Joe and others to improve this even further.

To explain our Plain English guide to Information Sharing, we wanted to try a Who, Where, What, Why, When  and How approach. We think it’s been fairly helpful.

In summary we would explain the model as follows.

Who

During a time of need a person often seeks help from a health or social care professional.

Where

The setting for that care may be in primary care (e.g. GP), secondary care (eg hospital appointment / ED), or they may be referred into a tertiary care (usually specialist) setting. Across the country we are encouraging more community care and recognising the need to integrate with social care. Of course many people need input from mental health services too.

As we explore new models of care, some of that care is provided by the “third sector” and/or voluntary services. Furthermore as we research to try to tackle and /or cure many of the big challenges of our time (cancer, dementia etc) we need to engage with the academic sector (universities etc.) to explore new treatments and approaches.

In the past all care was provided at a local level ( your family doctor and county hospital) but now some specialist care and services is provided at a regional and/or national level.

What

To facilitate any/all care information is always involved. Even if one is self caring that is the case, but particularly as care is now provided by larger multidisciplinary teams spread across organisations, so the need to share information becomes essential.

The amount information that needs to be shared to facilitate care can vary from your whole care record  (e.g. if you are moving from one GP to another) but more usually a single document or multiple documents between different parts of the care team. Those documents may take the form of letters or clinical summaries or might be a list of your medications, blood pressure readings  etc. Of course some of your information might be understood as being particularly sensitive information (e.g. HIV status) that may/may not be suitable to share.

Care Records are usually made up of a blend of patient details (name, date of birth etc.) and “clinical content” (e.g. your clinical details of your Diabetes condition if you were referred to a Diabetic clinic for instance.)  For day to day care purposes that information is kept together, i.e. your referral letter is identifiable (with your name and date of birth and clinical details). In certain circumstances your information may be pseudonymised (e.g. at a healthcare improvement meeting within the Diabetic Department , where the team may look to see how they can improve the care across the department, without identifying you by name to the rest of the team) or fully anonymised where all the identifiable information about you as a person is removed, but aggregate numbers are shared and analysed (e.g. number of Diabetic patients in Leeds needs to be shared with the Department of Health, to agree funding etc).

In fairly simple technical terms information is shared by either a push ( e.g. GP letter to the Hospital Diabetic team) or pull mechanism (e.g. Emergency Department seeks your GP summary information in an Emergency), though in practice a mix of approaches is often used.

Why

Though it may be obvious to state it, the reason why information is being shared is that the primary use of this shared information is to either support the direct care of patients (e.g. patients attending their GP or local ED) or their indirect care (e.g. a case discussion between multidisciplinary experts to discuss a complex cancer patients care).
There are other times when that information is later analysed to assess the quality and safety of care being provided or to identify growing needs across an area.  We describe this as the secondary use of that information.

When

In terms of the length of time that information is shared.. the usual practice would be that if patient information needs to be shared between professionals that is done on a permanent basis, although there are times when more sensitive information may be shared on a more temporary basis.

How

The proper means of sharing information usually involves a “good practice” known as “fair processing”, that is where a health and care organisation (or indeed organisations) involved in a persons care initially communicate as widely as they reasonably can.. to inform people in their care that information will only be shared between professionals if it is “fair and lawful” to do so.  In addition that good practice can be reinforced when a care professional makes an optional verbal enquiry or written enquiry to the person they are caring for, asking for their further permission to share their information.

As we move to integrate health & social care to deliver better care we are encouraged to break down the barriers that have held us back to date. Our clear understanding/assumption is that information should be shared more widely to improve care, so in the majority of cases consent to information sharing is simply implied.

If a professional chooses to make a verbal/written request for information sharing then the person involved chooses to respond by either agreeing to supply that information (which is by far the most common response) or deny the information sharing request (which is only done occasionally, but is technically explained as a refusal to share information).

Lastly if the professional think it’s in the person’s best interest they can choose to override that refusal (which is also known as “breaking the glass”) to access the information they believe is required to provide essential care (e.g. in case of patient with impaired mental capacity), though of course such action should be monitored carefully.

 

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