Case study: Patient Knows Best sees results from PRSB standard

Patient Knows Best has successfully incorporated the Digital Care and Support plan standard into their templates in order to better support personalised care. A health information exchange, Patient Knows Best brings information from health and social care providers as well as patients’ own information to create personal health and care records. We speak to the organisation’s CEO, Dr Mohammad Al-Ubaydli about using the standard in action.

 

What prompted you to use PRSB’s care plan standard?

We heard from our customers that the PRSB national shared care planning standard is what they wanted. Patients Know Best (PKB) has had the shared care planning functionality available in our application for more than five years – we were the first to enable truly shared viewing and editing, across all providers – including editing by the patient. However, we were looking for a standard to use with our customers and PRSB became the obvious solution.

How was this done? Did you find it straightforward to incorporate the standard in your template?

It was straightforward to do because the standard is specific and Patients Know Best is flexible. So it was easy and fast to create a care plan template in PKB that incorporated each of the elements of the PRSB standard. The PRSB documentation was also helpfully clear and complete.

How is it being used in action? By whom?

Since January 2020, the PKB-PRSB care plan has been available for all our customers. The feedback has been positive. Care planning teams like that they can use a national standard for their clinical transformation with PKB.

What challenges have you faced?

Shared care planning is clinically transformative. Everyone agrees that the patient seeing a care plan is the right thing to do, that planning with the patient improves outcomes, and that working across care settings increases safety. However, providers are still paid to document a care plan in their electronic medical records system, and none of these systems support shared care planning. Furthermore, clinical training programmes are still used in planning ‘for’ the patient not ‘with’ the patient. Transformation programmes tackle the incentives and training.

Do you have any solutions and advice for others hoping to use the standard?

Do it. Start small, start soon, but do it. The majority of health care spending is on long-term conditions, i.e. where the patient does most of the things that affect outcomes. In these cases they must be part of the decisions, plans and actions. More patients have more long-term conditions, so more specialists must help each patient, and care plans must be shared across care settings. These trends are large and long-term. The sooner you adopt shared care planning, the better for everyone, as the problems it solves will only increase.

What are the benefits to people who use services? To care professionals?

We know from previous work with shared planning that this is beneficial to patients and professionals. Patients who received their shared care plan from North Bristol’s severe trauma team improved their patient activation measure (PAM score) which is correlated to improve outcomes and lower costs. GPs had 28% fewer unscheduled appointments within 30 days of discharge from hospital, and the appointments were more efficient as the GP could see from the patient’s record, the same plan the hospital specialists had entered.

Anything you would change?

Communicating to payers that a plan that the patient cannot see and change is not a useful care plan. Nor is a plan that is trapped in one care setting’s record system. That provider may think it is useful to get paid to have written it – but it is not useful to the patient and so, the payer should not pay.

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CHAT theory also explicitly addresses five areas which if addressed systematically will help overcome stakeholder differences in pursuit of the common goal:

1. Understanding the artefacts that characterise the group and its activity.
• The artefacts might be clinical settings or the forms and templates used to capture and share information. During the pilot we heard about hard copy Dialog response forms; locally generated templates for collating information from different systems; letters and emails to GPs; images, poems or other non-text artefacts that service users might want to include in their ‘about me’ or care plan.

2. Understanding the multi-views of the group. Such groups are always a community of multiple points of view, traditions and interests. 
• Different participants in the group will have different roles and will bring to the group and their roles their own histories, language, and ‘rules’. During our Stocktake preparations and workshops we worked with psychiatrists, mental health nurses, occupational therapists, social workers, transformation leads and voluntary sector representatives, all professions and interests with their own language, approaches professional ‘rules’ but united in their interest in care plans, care planning.

3. Activity systems (like the ICSs) take shape and get transformed over periods of time. ‘Historicity’ is a term coined to express how the group’s problems and potentials can only be understood against their own history. 

 

• ‘We’ve always done it this way’, ‘that didn’t work before’, ‘it’s always like this’, ‘it wasn’t always like this’, ‘they are changing things again’, are all typical statements that often frustrate those charged with overseeing change initiatives. Without addressing the experiences that lie behind such comments you risk repeating mistakes of the past, alienating your stakeholders or just not understanding the real starting point for your transformation project. This is particularly the case for the implementation of the PCSP standard, the success of which will be largely reliant on point-of-care practices and information protocols as well as having systems which are user friendly and appropriately configured.

4. The central role of contradictions as sources of change and development. Contradictions are not the same as problems or conflicts. Contradictions are historically accumulating structural tensions within and between activity systems. Collectively addressing contradictions in how policy, practice, culture and technology interact will empower teams to find genuinely novel solutions for apparently intractable challenges, like interoperability and shared care plan/planning. 

This links to the fifth principle that:

5. the possibility of expansive transformations in activity systems. As the contradictions of an activity system are aggravated, some individual participants begin to question and deviate from its established norms. In some cases, this escalates into collaborative envisioning and a deliberate collective change effort. “An expansive transformation is accomplished when the object and motive of the activity are re-conceptualised to embrace a radically wider horizon of possibilities than in the previous mode of the activity.”

Successful teams have the functional skills to lead a task, benefit from diversity, and are led in a way that creates time and space for reflection; the ability to take stock periodically, of the task and of the way in which the team is engaged in delivering it. Your stakeholder analysis [HYPERLINK] should help you assemble the most appropriate team and identify how the team interacts and relates to other stakeholders like sponsors, services users, etc.

The variation in the size, both in terms of population served and numbers of constituent organisations, and of complexity, between Integrated Care Systems, precludes the possibility of any prescriptive guidance on the way in which this team is assembled.

Engeström’s expansive learning cycle of learning actions explains how there are 7 stages of learning actions;