"The digital revolution is here and we must embrace it"

Keith McNeil, chief clinical information officer for health and social care talks to the PRSB about why setting standards are essential to the digital health strategy

Q: What is your vision for digital health and care and what is your role as CCIO?

The vision is to join up all the information available and to collect it in a standardised and structured way and mine all the information out of that and feed it back in as close to real time as possible to everybody who is making decisions so we have better informed decision-making right across the system – at the point of care between a patient and clinician, by a business manager or by a researcher. That way we will embed better outcomes, patient experience and sustainability in the health system as a whole. My role is defining the strategy for what is the digital revolution across the NHS and social care.

Q: What do you mean by structured information?

We need information to be collected in a structured way and according to standards. It makes it much easier to aggregate and mine that information.

Q: What is the role of PRSB in enabling both the development and implementation of standards for information?

The role of the PRSB is to help set the standards by which data will be collected. The PRSB’s role is to get consensus that the standards it develops are the right standards to apply but also when we have agreed standards the PRSB helps people abide by them, align to them and implement them as business as usual.

Q: Given the pressures clinicians and professionals are under, how would you convince them to adopt standards as part of the digital transformation. Is there anything we can do to ease the burden to make adoption easier?

Clinicians do have very busy lives and this is really an opportunity to reduce the burden of collecting all this information. Clinicians collect information on the basis of clinical interaction with patients. We should be aligning the system – this comes back to standards – so that whatever we collect in terms of that clinical interaction is what is used for the rest of the system so we are not adding to the burden by additional collections of information that is outwith that clinical interaction. If we collect information in a standardised, structured way we won’t need to keep going back and asking for it to be re-cut in another spreadsheet or another form to go off for another decision-making point. So if we collect it once and we collect it right, in a standardised way, that is enshrined in the clinical interaction, the burden will be taken off the clinicians of having to re-cut that data time and time again which is what happens now.

Q: How can we ensure that the vendors’ systems are compliant with standards? How is this being addressed and can we give confidence to local health and care organisations that this is being addressed?

The vendors are really important in this whole equation as they will provide the means by which important information is collected. It isn’t if but when we align the vendor community to accept standards and embed them into the systems they build for hospitals so that they are embedded into patient pathways, codes for diagnoses, pathology, radiology etc My sense is that they are looking for these standards so they can tune up their offerings toward this agenda.

Q: How are you involving other national bodies to support adoption of standards and the digital agenda?

We are having conversations across the whole system involving all the arms-length bodies like the CQC, NHS Improvement and others. We are single system and need to be aligned and one of the best ways to align the system is through information flows. If you have consistency in the way the information flows and the types of information and data that flow, then we can begin to align inspection, regulation and commissioning into a single system.

Q: What role will global digital exemplars play and how will others follow their lead?

We want GDEs to showcase what the art of the possible is in terms of the digital agenda – what it can do for patients and clinicians on the ground. GDEs are expected to be at the cutting edge in terms of digital capability and maturity and we want them to share that learning across the system. We want that to spread out like ripples across the NHS.

Q: Will each GDE have specific digital goals that they must achieve that are both technical and clinical or patient focussed?

The GDEs range from big, complex tertiary teaching hospitals down to hospitals which are largely place-based in communities with large community services. Some will be saying how can we make the whole of our system better by upping digital maturity across the system, others like tertiary hospitals who see different sorts of patients will be saying how can we cover the patient pathway before they come into hospital and after so we can minimise the impact on acute services.

Q: How can others further behind get moving on the digital agenda?

There are things that every organisation can do and should be doing and one of them might be implementing the E-discharge summary standard that has been agreed and is part of tariff and is agreed with GPs. Electronic prescribing is another area that is really important and a big National Institutes of Health Research study will show that even rudimentary electronic prescribing systems can reduce medication errors by 50%. Every single board across the country will say we can no longer afford not to invest in this because it is so important and we will try and help them do that.

Q: What role does digital maturity play in delivering improvements in cancer, mental health and genomics as outlined in the Five Year Forward View and the refresh?

We can really change outcomes in a quantum leap – this really depends on information. We need to make sure the information flows are there to support the sort of transformation in service this will bring about. We also know there is a big opportunity to use digital techniques and tools to provide services to patients with mental health problems – particularly in patient empowerment. We need the entrepreneurial community to get involved, and patients to get involved so we can maximise the benefits of all this.

Q: What notable innovations have you found across the country that could be shared elsewhere?

Shared care records across health systems are starting to be developed and there are individual initiatives at the level of intensive care where linking up automatic sensors to provide fast early warnings of deterioration, much faster than we can pick up as humans by doing intermittent observations. So we can make early interventions, preventing deterioration or the need for admission or the need for intensive care.

Q: How do you encourage local innovation but strike a balance and ensure national standards are adopted?

Wherever we do things that are place-based we do need to agree a consolidated or national standard. STPS will need to look at how their individual organisations collect information so they can compare information and we want to compare STPs. We want to make sure this works locally because this is about local provision of care. But we want to do things nationally where it is appropriate.

Q: What role will chief clinical information officers and chief information officers (CCIOs and CIOs) play in the transformation to digital and how can we make sure we have enough CCIOs and CIOs?

CCIOs and CIOs are pivotal to this. They are going to provide the leadership within organisations that enables this transformation. They have a dual role – making sure the technology is right to provide what clinicians and patients need on the ground but they will also bring them along to transform the way they work. It’s very important not to think it’s the technology which is going to change what happens in practice, It’s the adaptive change – using the technology to transform the way we work that is going to provide the power from the digital revolution. It is going to create different ways in which we treat patients, different ways we approach planning our treatments and looking at patient pathways in different ways. We need more CCIOs and CIOs to attend to this agenda.

The digital revolution is here and now. We have to embrace it and adapt to it and we need people who will help us do it. So we need to train up more people in digital capability including analytics, informatics and transformational leadership across the board- this is really important.

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Personalised care and support planning for people with severe mental illness

A review of a sample of current care plans, and the way they have been developed, may be helpful in identifying the priorities for this improvement. The PRSB Implementation Guide provides more detailed explanations about each element of the plan, including advice on how the planning process might be best conducted.
These questions might form a checklist for current plans to be compared with. 

1. Does the plan include an About Me section in which the service user, in their own words, can indicate the information they want to be available about their lives, their values, their interests, and priorities, available for all those who may care for them?
2. Is the approach to developing a care plan patient centred and engaging, allowing plans to be based on patient priorities goals, and aspirations, along with the actions they plan to take and the support that they will receive?
3. Is there space for a “formulation” to be recorded in which the person receiving care and the professionals who provide it, share and record the personal meaning and the origins of the person’s difficulties?
4. Are relevant procedures and therapies recorded?
5. Where relevant, are one or more contingency plans included for anticipatable disruptions, exacerbations, or deterioration, and do they include advice on what to do and points of contact for those called upon to respond?
6. Where relevant are additional supporting plans incorporated, (an example being an “educational and health plan” for someone with a neurodevelopment disorder)
7. Is a version of the plan available to a service user (if they wish to have it) in a form and format that they can understand and find to be of value?
8. How is a version of the plan available to the GP and other key parts of the health and care system?

Work conducted by PRSB and partners recently has looked specifically at the suitability of this approach to the development and documentation of care and support plans for people with Severe Mental Illness. This resulted in an updated version of the standard (v1.4), for use by any service and for any group of service users, but with some modifications to ensure that it meets the needs of this community. The approach to a patient centred process of identifying goals, hopes, and values, and the support needed to achieve them, is fully compatible with and can be conducted using, specific tools in use in mental health, such as DIALOG, DIALOG+, and ReQoL, for example. 

Where analysis indicates the need for improvement in the content and process of personalised care and support planning for patients with Severe Mental Illness, specific improvement projects should be instituted to co-design with service users and their representatives, and the relevant staff groups, new approaches, and documentation that would be of value in delivering improvement. The toolkit includes a range of existing resources that could be used to engage in this improvement work, including signposting to relevant existing approaches informed by patient experience-based design.

Moving to a single holistic plan

A review of a sample of current care plans, and the way they have been developed, may be helpful in identifying the priorities for this improvement. The PRSB Implementation Guide provides A key development, consistent with national policy on support for Personalised Care across all health and care sectors, is the move towards an individual with complex needs having a single, integrated, care plan, rather than a series of plans developed by different parts of the health and social care system in isolation of one another. For a patient with severe mental illness, the related concerns and challenges might form a very prominent part of such an integrated plan; many will also have concurrent health challenges and needs. The intention is that the relevant services work together to plan and wrap support around the patient and their family in an integrated way, rather than as a series of sequential or disconnected encounters in which the service user or their friends and family have to adopt the role of the integrator.

A starting point would be to agree priority groups of service users who may already have more than one care plan because they need care from more than one part of the system of health and social care. This could be initiated by looking at service users registered with some sentinel practices or PCNs. Alternatively, the approach might focus initially on people with defined co-morbidity or risk that entails collaborative care with agencies beyond specialist mental health services.

The focus here is on the process of care planning and agreement on what should be shared, rather than solely on the technology used;

1. What is the process to agree which professional will initiate care planning and act as the “lead point of contact” for the service user?
2. Will initial plans be agreed with the service user in joint consultations or sequentially? Where and how will they be conducted?
3. What will be the process to agree the elements of the plans which should be available to professionals and potential authorised users beyond the immediate care teams, (A&E services, Ambulance Services, Social services, etc.) with the service user’s consent?
4. How will elements of the plan be updated following consultations in a way which is proportionate, to allow contact and progress notes to be maintained by the service conducting the consultation, whilst avoiding unnecessary work for partners in care if there is no significant change to the personalised care and support plan?
5. What are the implications for workload, logistics, and administration arising out of these decisions?

The answers to these questions and others will best be elicited through focused joint working, grounded in real, or at least realistic examples. This will entail process mapping, and co-design with a range of professionals, service users, and families. Resources from the toolkit and outputs from the Simulation element of this project will be valuable. Some organisations would adopt an approach such as a Rapid Process Improvement Workshop, planned over several weeks and conducted over a number of sequential days, to develop prototype ways of working that could be tested in the field.