The Kendal Project (Case 1)

Project profile

Objective To explore and evaluate different creative options for improving how data from monthly blood tests is visualised for patients with the aim of improving patient engagement and understanding. This is to take the form of a working digital prototype of a visualisation tool.

CX Cluster Public Service Innovation and Democracy

Budget £500 & PhD student's time

Status Ongoing at time of interviews

Project Partners1

• Lancaster University (Creative Exchange Lead)

• Westmorland General Hospital (Dialysis Unit)

Wider Stakeholders

• Royal Preston Hospital (Renal team)/Lancashire Teaching Hospitals

NHS Foundation Trust

Sources of Data Key Documents

• Creative Exchange Project Proposal

• Creative Exchange Collaboration Agreement

• Project TOR/Prototype Design Brief

• Project completion report

• NHS guidance for renal patients.

• Improving the Visualisation of Renal Blood Test Results to Enhance Patient-Clinician Communication, 12th EAD Conference, April 2017 (Gradinar et al. 2017)

Interviews

• Heather Hill Renal Dietitian, Royal Preston Hospital,

Lancashire Teaching Hospitals.

• Professor Paul Coulton Lancaster University, Academic lead

Background

This chapter presents the CX project Improving the presentation of renal blood test results (Kendal). This case is one of the six projects included as part of this research enquiry. Unlike the five cases presented in Chapter 8, the author was directly involved in the delivery team. His role as both a renal patient and PhD researcher provided a lens to explore different themes associated with knowledge and knowledge exchange, both in a clinical context and in the context of the collaboration itself.40

Following discussion with the renal dietitian (Heather Hill, Lancashire Teaching Hospital Trust), it was decided to develop a project for The Creative Exchange (CX). Discussions were subsequently held with potential team members at Lancaster University (Professor Paul Coulton and CX PhD Adrian Gradinar) and Dr Ahmed (Renal Consultant) to provide an appropriate mix of skills and experience. Following approval by the Health Research and Innovation Department at Lancashire Teaching Hospitals Trust (LTHTr), a proposal was formally submitted to the CX in January 2013. Ethics approval was granted by Lancaster University on March 25th, 2015 (Appendix 2). The Centre for Health Research and Innovation (Lancashire Teaching Hospitals) identified the project as service innovation without a related need for NHS ethics approval (Appendix 2).

The project’s immediate objective was to develop a working prototype to demonstrate novel and creative ways of visualising blood test results to assist renal patients (and their families/carers) in understanding and managing a chronic health condition. The tool aimed to provide a catalyst for more effective knowledge sharing between

patients and clinicians as the basis for the joint development of management strategies for chronic kidney disease (CKD). The wider goal of the project was to demonstrate the value that design, as a professional and research discipline, can bring to the renal team at Lancashire Teaching Hospitals Trust (LTHT).

40 _{Heather Hill Renal Dietitian (Lancashire Teaching Hospitals), Adrian Gradinar, CX PhD and}

The clinical context

"Individuals with CKD are required to change nearly every aspect of their life, following complex regimes involving multiple medications, special diets and fluid restriction" (Wright Nunes et al. 2016, pp.1-4)

Chronic Kidney Disease (CKD) is a clinical term used to indicate a deterioration in kidney function (National Institute for Health and Care Excellence (NICE) 2015). CKD is classified in five stages with the fifth stage regarded as kidney failure. Deterioration in function can occur over a period of years or very suddenly often requiring immediate clinical treatment. Stages 4 and 5 reflect severe impairment where health cannot be maintained requiring patients to undergo regular dialysis treatment or a kidney transplant.

As of 31st December 2014, it was estimated that 58,968 adult patients were receiving renal replacement therapy41 (dialysis) in the UK. Within Lancashire Teaching

Hospital Trust there were 523 hospital haemodialysis patients, 87 home haemodialysis patients and 11,601 clinic patients in 2016 (The Renal Association 2017). Routine blood tests are carried out for all patients (monthly or as required). The results are viewed by the renal team and adjustments to diet, medication and dialysis treatment are made as needed, in consultation with each patient. The results of tests can be made available to patients in two ways (the source of the data is the same):

• The renal team accesses the results in a clinical setting via a secure, online platform that is available to NHS staff only. They then discuss/interpret the test result data with patients (Figure 22).

• Patients can also access blood test results online (e.g. from home) via the NHS website Patient View. This secure online platform requires individual patients to register for access via their local hospital. Additional support in interpretation of the results can be provided by renal staff on request.

Figure 22 Example of current format for printing blood test results (on ward)

Inspiration for the project

The inspiration for the project arose from the researcher's direct experience as a renal patient and his observations of how the current system for communicating blood test results worked in practice and how this system might be improved for the benefit of both clinicians and patients. Issues considered important included;

• an overreliance on numerical data;

• varying ability (from excellent to poor) and time made available (little to as much time as needed) by clinicians in explaining test results;

• varying capacity of patients to concentrate and absorb information. The observations prompted the question as to whether the current method of

presenting blood test results could be improved, specifically on the dialysis unit and in clinic, through exploring a new approach to catalyse effective knowledge sharing between patients, families/carers and clinicians.

Stage Context Capacity Questions _Information42 Crisis Month 1 Hospital Very limited Will I survive? What has happened? What will happen (treatment)?

Will it hurt/have side effects? Random conversation with doctors and nurses. Observation Recovery Month 1/6 Home/ dialysis unit

Limited What has happened and will happen to me?

Why do I feel so tired?

Side effects and prognosis.

Can I get back to any normality?

Conversations with doctors and increasingly with nurses. Observation Leaflets Transition Months 6/12 Home/ dialysis unit Limited but better able to absorb and understand information . Greater understanding of the clinical journey.

Gaining confidence about managing CKD. Targeted conversations with consultant, dietitian, some nurses. Observation of fellow patients. Renal charity websites. New Normal Month 12 + Home/ dialysis unit Adapting to a new normal but impacted by dialysis cycle. Desire to take responsibility for managing dialysis process.

Learning how to self- manage and considering home dialysis. Targeted conversations Web searches e.g. charity websites. Trial and error in learning self- management

Table 18 A patient's journey: a personal reflection on the stages of recovery

Table 18 provides an overview of a patient's journey, highlighting important stages of recovery leading to a new normal. Inspiration occurred during the transition phase, where blood tests were recognised as critically important in understanding CKD and how to manage it. A key characteristic of recovery were factors impacting on the patient's capacity to absorb and understand data, and this insight was confirmed through observation of fellow patients. This reinforced the value in exploring creative ways of presenting test results to present information as simply as possible to assist in patient learning, help clinicians in their interactions with patients and explore new ways of empowering patients to become active partners in the management of a chronic health condition.

A clinician's perspective

"I believe that our data visualisation tool could offer patients a new interactive way of presenting blood results to patients and helping them achieve steps towards increased knowledge, understanding and self-management" (Hill 2017).

The clinical partner for the project was Heather Hill (Renal Dietitian) with further clinical support provided by Dr Ahmed (Renal Consultant) and Scott Rayner (Renal IT Manager). In the context of renal failure, the role of the dietitian is critically important in supporting patient management of their condition. Using the monthly blood test results, the dietitian undertakes consultations with each patient to review results and discuss diet. The overall aim is to keep the patient as well as possible, prevent malnutrition, optimise blood results and minimise complications associated with CKD.

High levels of potassium and phosphate are common side effects of CKD and

particularly dangerous as they can lead to cardiac arrest, bone disease, calcification of blood vessels and increased mortality. Potassium and phosphate levels can be

controlled by a diet low in these minerals and taking medication (for phosphate). Currently 56% of patients (based on 2015 data) at the Kendal haemodialysis unit do not meet the UK Renal Association Clinical Practice Guidelines for phosphate control (Mactier et al. 2011). This mirrors the national picture and led to the dietitian to reflect upon whether current management methods could be improved.

Alignment with NHS policy

“We will do more to support people to manage their own health – staying healthy, making informed choices of treatment, managing conditions and avoiding

complications” (NHS England et al. 2014, p.12)

The importance of patient involvement in managing chronic health conditions is recognised in NHS guidance. The National Institute for Health and Care Excellence (NICE 2015) highlighted that patients with CKD should be supported and encouraged in self-management and in accessing their test results and medical data. The guideline also advised that 'When developing information or education programmes, involve people with CKD in their development from the outset' (NICE 2015, p.181).

Project Methodology

The Double Diamond (Design Council 2017) illustrates a design-led approach reflected in the methodology adopted in project delivery. It is a process characterised by divergent and convergent thinking with emphasis on iterations from conception to delivery (understanding of context and needs, generating ideas, prototyping, testing and refining to find a workable solution).

Discovery: Discussion between team members was important for both transferring and sharing knowledge and developing an understanding of the renal context of the project. This included a visit to the Dialysis Unit at Royal Preston Hospital and discussion with the Renal IT Manager. The site visit provided an opportunity for the team to see a dialysis unit and place the project in a wider context of clinical care and data management. These conversations were reinforced by the literature review43 and a process of developing a shared understanding between patient, dietitian and the wider team in relation to questions and sources of information associated with interpreting test results.

Definition: Based on conversations, desk research and a site visit, a clearer

understanding of the design challenge and needs of both clinicians and patients was achieved (manifested as a design brief). The project aim was confirmed as being to help both clinicians and patients understand and act on blood test results to be achieved through presenting them in a more easily understood format. The brief stressed that the prototype was to be designed to be viewed by multiple users in a variety of clinical settings including the dialysis unit, ward and clinic e.g. by the multi-disciplinary renal team, patients, families and carers via tablet and desktop. The IT system was analysed in order to identify how the prototype could be embedded into the system and made available to clinicians.

Development: Mock-ups were developed through a series of iterations with the delivery team. Initial mock-ups of the prototype were presented to the North West region's monthly renal dietitian's meeting, with discussion highlighting issues related to design. The output was used to refine a design brief for the final phase of design and delivery.

Delivery: The final stage of Phase 1 included the development of a fully working prototype which was used as the basis for Phase 2 testing and evaluation with a wider group of patients.

The design-led methodology, reflected in the Kendal project, was strongly aligned with Action Research (AR). Swann (2002, p.5) notes that:

"Action research arises from a problem, dilemma, or ambiguity in the situation in which practitioners find themselves".

A number of relevant principles of AR were reflected in the Kendal design-based methodology (adapted from Andriessen 2008; Swann 2002);

• project situated in a social context/practice;

• emphasis on generating change towards a desired future state;

• collaborative and equitable team working to explore and find solutions;

• working through a cyclical process of planning-acting-observing-reflecting and learning.

As the Kendal team worked together to iteratively explore opportunities for improving day to day professional practice and patient experience, it's methodology was aligned with principles of AR including an emphasis on a cycle of prototyping- feedback- refinement, with focus on finding a viable solution aligned to the clinical/patient context and needs. Andriessen (2008) and Swann (2002) are among those academics and practitioners who have recognised such similarities in method and emphasis between the design-based approach and AR.

Catalysing a shared understanding

Figure 24 Mapping shared questions related to blood test results between dietitian and patient

An initial priority for the team was to align the project to the needs of both clinicians and patients. Figure 24 illustrates the landscape on which the team explored the development of the prototype. The map was generated by the dietitian and patient in conversation and shared and discussed with team members. It illustrates key questions posed by dietitian/patient in relation to managing diet and importantly identifying their overlap in terms of respective questions and interests. This overlap then provided the context within which the prototype would be developed. The aim of this exercise and related discussion was to facilitate a shared language and understanding across the team as to the needs that would be addressed by the prototype.

Literature review

A literature search was carried out (March 2015) by the Library and Information Service at Lancashire Teaching Hospitals Trust.44 The initial search did not reveal any relevant results and the search criteria was broadened to include non-renal patients.

44 _{Cochrane Library, Medline/Pub med, CINAHL and EMBASE. The search terms were: 'data}

visualization', 'data visualization', 'graphs', 'computer graphics', 'graphics', 'audio visual aids' and 'health communication'.

Clinicians recognise that people learn in different ways, with the research suggesting that new approaches to dietary education required, particularly with younger patients.

Collinson and colleagues concluded that:

“Using the same dietary education techniques may not be suitable for all ages, more innovative approaches supported by skilled health professionals are needed to motivate and engage with younger patients to promote self-management and adherence” (Collinson et al. 2014, p.1).

Brewer and colleagues, in a study of 106 adults, explored the comparison between tables and graphs in communicating health records. They concluded that bar graphs required less time and experience to convey results (Brewer et al. 2012).

Tang and colleagues, in a randomised trial of 415 patients, explored online

management of Type 2 diabetes (Tang et al. 2013). The study concluded that a nurse- led multidisciplinary health team can manage a population of diabetic patients to achieve positive results using online services (sharing data and knowledge for managing the disease). There was no explicit reference to how data was visualised.

Garcia-Retamero and Hoffrage explored visual representation of statistical data for improving diagnostic inferences (clinicians and patients) (Garcia-Retamero & Hoffrage 2013 pp.31-32). The study included 81 doctors and 81 patients who made diagnostic inferences about three medical tests. Their conclusions noted that that doctors/patients made more accurate inferences when information was communicated in natural frequencies relative to probabilities and that visuals aids boosted the

accuracy of the inferences made.

Elder and Barney (2012) explored preferences for communicating test results to primary health care patients. Their insights were generated from a semi-structured interview of twelve adult home-based patients, over half of whom had a chronic condition requiring regular testing. This study identified factors that supported test results being incorporated into personal health decision-making. The resulting algorithm included (Elder & Barney 2012, p.168):

“..communication elements (the purpose of the test, the actual results with desired values, clinician guidance, and a graphical representation) and appropriate choice of notification technique (phone/visit for diagnostic tests and all significantly abnormal results and mail/e-mail/web for all others)”.

Morton and colleagues looked at educational background in relation to health

outcomes in CKD. They found that lower educational attainment is associated with an increased risk of cardiovascular disease and mortality for people with moderate to severe CKD, reaching the conclusion that educational attainment should be taken into account in care strategies. New interventions for CKD patients need to be carefully evaluated before implementation in order to ensure they are relevant and appropriate for the target audience (Morton et al. 2016).

Wright Nunes and colleagues point out that 'We need to do a better job helping people manage their complex health conditions'. In terms of CKD, they go on to say that,

“..the real dilemma and our collective challenge remain in how to help patients change multiple behaviours that include diet restrictions, complex medication regimens, and healthy lifestyle implementations without becoming overwhelmed”

(Wright Nunes et al. 2016, p.1).

Web search

The topic of the web search was the 'visualisation of renal blood tests' subsequently expanded to include 'visualisation of blood tests' and the impact of digital technology on shared healthcare decision-making. The search highlighted initiatives exploring the potential impact of digital technologies on four key dimensions:

i) wellness and fitness; ii) biometric and clinical data;

iii) visualising blood tests and lab results (in theory); iv) shared decision-making and clinical guidance.

In the 'Future is Now' report (Ham & Brown 2015), emergent opportunities are placed in the context of drivers impacting on healthcare across developed economics; notably rising costs, limited budgets and growing social and personal expectations about the quality of healthcare and life. The search illustrated how digital technologies are catalysing opportunities for enhanced patient engagement although there was limited work in the field of visualisation of blood tests with no specific references citing the role of blood test results in supporting renal patients. Further insight included:

A distinction between the well-being/fitness applications (Google, Apple, Samsung) and web-based initiatives (including Apps.) focused upon self-/co-management of chronic health conditions. In the future, the apps under development may have the capacity to draw upon clinical data (e.g. Apple) or self-generate biometric data (e.g. Samsung).

• A range of initiatives, (largely clinically led or in partnership with clinicians), exploring co-management of chronic health conditions, focused upon collab- oration between clinicians and patients. The initiatives used different dimensions of digitally enabled technologies from websites, text-based services to mobile applications.

• A variety of largely web-based tools focused upon providing information and guidance to patients on a range of health-related topics including renal e.g. My Kidney (Guy’s and St Thomas & Kings College NHS Foundation Trust 2016) and

Defining the design brief

The following design principles were identified, informed by desk research, team discussions, a site visit to a dialysis unit and presentation and discussion of an early stage prototype with a group of regional renal dietitians. These principles distilled from this process informed the subsequent design process and resultant prototype: