Visual test results by Design for Services '14

VISUAL TEST RESULTS

Chris Timlin Hanshuman Tuteja

Our Thanks To We would like to express our deep gratitude to Dr. Graham Kramer, our expert adviser, for his guidance, encouragement, patience in giving us this masterâ&#x20AC;&#x2122;s research challenge. Dr. Kramer provided us with very valuable information serving as a foundation to start our research. We would like to thank Professor Mike Press and Hazel White for their professional advice, supervision and engaging critiques throughout the project. We would also like to thank the staff of the following organisations for enabling us to visit their practices and offices for interviews and to observe their daily operations: Annat Bank Practice, Montrose Ninewells Hospital, Dundee X-pert Health Scottish Care Information Diabetes Dundee Diabetes Research Centre DiabetesUK Support Groups in Dundee & Angus NHS Tayside Individuals living with diabetes have been crucial during this project and we are particularly grateful to all who spent their valuable time sharing their personal experiences with us. Special thanks to DCJAD, University of Dundee for providing us with this platform. Thanks for the authors and publishers of This Is Service Design Thinking and Flaticon.com, the resources of which helped create this report. Special thanks to Rebecca Black and Lydia Broussard for their assistance proofing this final report. Finally, We would like to acknowledge the help provided by the DJCAD Design Masters Cohort and being there for us whenever needed.

Executive Summary “Service design is the activity of planning and organizing people, infrastructure, communication and material components of a service in order to improve its quality and the interaction between service provider and customers.” Design Council (What is Service Design, 2014)

Visual Test Results has been born through a collaboration between designers, medical professionals and individuals living with diabetes. Its aim is to empower individuals, by providing medical information in a visual manner, to support richer conversations with their healthcare team. To tackle this, the project took a Service Design approach. This method uses interviews, idea creation and testing to examine and improve on what currently exists. These methods seek not only to expose the current circumstances but to aim to discover why the current situation exists. More importantly it unearths what changes can be supported by the resources and individuals already involved.

Individuals currently living with diabetes may receive their test results during valuable consultation time. A low level of literacy may be a further challenge to understanding. This provides little time to understand their impact in the time they have with their healthcare team.

The 3 month project created visual medical information, tailored to individual preferences and requirements.

It aimed to describe results relative to the risk of complications that may arise. This information could then be shared before an appointment, providing additional time for personal understanding to develop as well as preparation for the time limited consultation. Individuals are empowered to choose how they best understand the information given. Visual Test Results is designed to support varying levels of literacy.

The end result combines the individual’s area of expertise, being the experience of managing a condition with medical information given to them in a way that they can understand. This project aims to provide opportunities for individual and medical professionals to become better partners in managing an individual’s health. A small scale trial is being planned for August 2014. The learnings from this will then hopefully be highlighted through the Health Literacy Platform in Scotland.

Contents

Background

Exploring the context of living with diabetes in Scotland and how design may help find an answer.

Context Challenges

Rising costs, literacy barriers, self-managed conditions. Where can design help to create positive impact?

Research

Seeking medical professionals and individuals to understand the real situation at hand.

In a Relationship

Communication, information and â&#x20AC;&#x2DC;trueâ&#x20AC;&#x2122; stories.

22 29 30 35

Developing Ideas

Developing ideas to explore what the final design could be.

Ideas Guide Conversations

Balancing the needs of everyone with the goals of the design.

Final Design

The final design and how it fits into the existing system.

What It Does

Adaptable, representative, helpful and saved as a reminder.

36 39 40 43 44

The Value

Health is a Human Right, Visual Test Result may aid better Health.

Benefits & Implications

Potential resulting benefits & drawbacks.

Next Steps

Future implications, potential avenues & opportunity.

work.

The Plan

A Trial, A Partner, A future.

Bibliography - Appendix

References and supplementary

Improved Health

February

August

BACKGROUND

A System for Medicine “Health education should be placed in the forefront of national health policy. It should aim at producing a people who are balanced physically and mentally who enjoy health and take it largely for granted because, by education and training, their outlook and habits are healthy.” NHS Scotland (Cathcart Report 1936, 2014)

The NHS in Scotland came into being in 1948 and a revolution in social health occurred. Previously, around half of the population received healthcare through working insurance. The other half, largely women and children but overwhelmingly the poor, had to pay.

This newly formed NHS provided at point-of-need care that was free to access for all. This did not come cheaply. According to the NHS, in its first year the spend came roughly £6.76 a person or £35m. The approximate equivalent of £1.1bn today. This sum was massively more than anticipated, a full 40% higher than expectation. In the original plan, General Practitioner Doctors were to become central to

Where Does Diabetes Fit “Diabetes has a cost for the NHS, society and most importantly for those who live with diabetes.” DiabetesUK (Scotland: State of the Nation, 2013)

In just 5 years between 2006 and 2011, the total number of individuals living with diabetes increased by 50,447 almost 5% of the Scottish population. If this trend continues unabated, this will rise by another 100,000 people by 2030, representing 6% of the population. The majority of this increase is due to Type 2 Diabetes, a largely preventable condition.

staying healthy with added support from other experts such as pharmacists and dentists at specialist centres that would promote health over treating sickness. However, with the treatment costs skyrocketing, promoting health had to wait. The NHS had to treat first, and promote second. Today the expenditure is far greater. In 2013 almost £11.9bn was spent by NHS Scotland. However, the spending is not spread evenly. The Royal College of General Practitioners point to the discrepancy between their budgets, and face-to-face time with individuals in Scotland.

“[GP Consultations are] covering approximately 90% of patient contact for just 10% of the overall health budget.”

Today £1bn is spent anually on diabetes, of which a massive 80% is used for treating avoidable complications. This is compared to the relatively minor £16.3 million being allocated to diagnosis and monitoring. To avoid an ever swelling budget, money should first be spent on supporting individuals living with diabetes, before tragedies such as a loss of a limb occur.

The Human Component “Self management is the responsibility of individuals. However, this does not mean people doing it alone.” ALLIANCE, (Guan Yersel, 2008)

In the simplest terms, diabetes is a lifelong condition that causes an individual’s blood sugar to be too high. This is due to a lack, or fault in use, of a chemical called Insulin in the blood stream. Its purpose, is to take sugar from the blood and allow it to enter a cell where it can be used for energy.

to pursue policy was due to this lack of consensus.

However, no there is no simple description to explain how it can affect daily life. From life choices to complications, there is a lot more to living with the condition than this can accurately describe.

What complicates matters is that access to medical professionals is very limited. Individuals with long term conditions usually are mainly treated for their complications.

First, to fully understand their diagnosis, an individual must first have or develop an appropriate level of is often referred to as ‘health literacy’.

Nutbeam (2008) describes three levels of health literacy. Functional; reading & writing. Interactive or Communicative; cognitive & social skills to actively participate. Critical ability; to analyse & use information to overcome barriers to health.

Whilst in their 2009 scoping report, the Scottish Government did not discover a unified definition, they did highlight Nutbeam’s work as a broad and influential. Their recommendation not

Schillinger in 2002 found individuals with diabetes had higher levels of blood sugar and higher incidence of consequences suffered from related eye diseases.

Many individuals are provided with some education or remote assistance, but can only meet their medical professionals up to a few hours a year. The rest of the time, they will manage the condition alone, or ‘self-manage’. Diabetes UK estimates the ability of an individual to care for themselves and manage their diabetes accounts for 95% of all diabetes management. Programs such as X-Pert Health offer courses 15 hours long to prepare individuals to manage. In stark comparison, professionals in NHS Lothian are expected to complete a 300 hour course to assist individuals in managing their diabetes.

A Situational Overview

Managing the Self “An individual with chronic disease is in the medical office an average of 6 hours a year. The patient spends the remaining 8,754 hours outside.” US Department of Health & Human Services (2010)

ALLIANCE (Guan Yersel, 2009) Scotland suggests this challenge be faced by empowering an individual to be in the ‘driving seat’. To assist individuals in understanding their condition and have the confidence to make their own decisions and act without relying solely on the advice of their health care team. This requires individuals not to simply be informed, but aware of how and why they act. Mindfulness, described by Carlson, is a reflective practice that withholds self evaluation to better perceive the current external, and internal situation. Gregg has shown that individuals living

Equal Adults “The fevered child asks for a glass of water, and the nurturing mother brings it.” Eric Berne (1964) describes how the emotional need of thirst, is met by the memory of where to find water.

Transactional Analysis is the method which Eric Berne used to observe how people socially interact. It guides understanding of how people react internally, divided simply into Parent(Memory), Child(Emotional) and Adult(Evaluative). In the example on the left, the parent is providing what they remember will help the child’s thirst. In many ways, this is

with diabetes were better able to self manage and cope with their condition, when both educated and practicing mindfulness. However, in Hibbard’s (2010) American study of GP’s attitudes to selfmanagement, GPs were much more likely to endorse individuals following medical advice, over individuals acting independently or joining as a member of their healthcare team. The response was most negative towards individuals independently seeking information. Websites such as Patients Like Me and My Condition My Life reflect these issues. Allowing individuals who feel disempowered by medical professionals to discuss their medical results with others or a promotion of individual empowerment by medical professionals.

equivalent to a traditional, therapeutic relationship between Doctors and their patients.

The complication is that a balance of lifestyle, and medical information is required to properly manage a condition. Both parties need to be able to be ‘Adult’, evaluating as partners.

Our Design Approach Understand the situation.

Conducting interviews, researching the context and listening to conversations to grasp the current situation.

Why Design uses Visuals “Design is the intermediary between information and understanding; its role is to make the complex clear and useful.” Richard Grefé (2012)

Explore new possibilities.

Try, Share, Learn. Try Again.

Turning understanding into stories of individuals involved and the pressures they face allow ideas to generate.

New ideas, used to communicate with individuals, are repeatedly improved towards a final design and report.

Design uses visuals to aid understanding of complex information without the use of equally complex language. O’Grady highlights that the best information design often goes “unnoticed”, as it is simply so easy to understand.

it can also be beautiful evidence.

Though not an exact language, visuals meant to convey information should follow certain conventions. From providing scale, to provoking thought. Tufte (2006) argues that visual information can be not only informative,

However, visualising information goes deeper than communication. Schneider champions its ability to plan out how ideas will work in practice. Using visuals allows sharing imagined possibilities, allowing for involvement of people beyond the design team. By working with doctors and patients alike, we aim to create visual test results that improve their communication.

Combining Forces “The only way to communicate is to understand what it is like not to understand.” Richard Saul Wurman (2014)

The key to this project’s success is to combine the medical knowledge of Doctors with the personal experiences of individuals with diabetes. Design provides not only the approach, but explores those human experiences, combining them together to create a new, improved outcome. Polaine (2013) sets out that designers allow for services to be “based on genuine insight” of the individuals, delivering real value to those who use them. Service Design offers the tools to not only engage people in exploring their situations, it also provides an approach to take the insights gathered & develop new ideas into permanent change.

The Challenge

Dr Graham Kramer, Montrose GP and Clinical Lead for Self Management and Health Literacy at Scottish Government.

This focus upon trying new ideas based on insights, rather than a medicalized search for evidence, allows for humanbeings to be placed at the centre of creating novel tools and services. Jones champions using design in healthcare, envisioning that it will allow everyone involved to become empowered with the services and tools they to require for quality healthcare. Design focus is no longer creating beauty, but learning from and creating with individuals to improve their current experience. As Meroni describes, “In the twenty-first century, a designer rarely ‘designs something’ but rather ‘designs for something’”.

“One in 20 people live with diabetes and have to have regular blood tests and measurements. Often people go back to their Doctor or Nurse to get the results of these tests and have a discussion about what needs to be done to help improve things.”

“They are then expected to have an informed discussion about them with their healthcare professional. Ideally people should be able to see their results in meaningful and engaging visual formats (not just numbers) to contemplate before their consultation.”

“It often can be difficult for people to take in these results, which are often meaningless numbers, and understand them.”

“In practice this is difficult to achieve but it would be wonderful to work with design experts to develop a solution.”

KEY INSIGHTS Diabetes results from a lack of, or fault of, a chemical called insulin, which carries sugar from blood into cells. Complications include nerve and blood vessel damage that can result in sight loss, amputation and death. Diabetes costs the Scottish NHS over ÂŁ1bn a year, 80% of which is spent on avoidable complications. Only ÂŁ16.3m was spent in 2012 on diagnosis and monitoring. Health literacy is the measure of an individuals ability to understand medical information. 258,570 Individuals live with diabetes in Scotland.

A lack of health literacy results in poorer medical outcomes. Self-Management is the ability to live healthily alongside a long term condition. An individual with a long term condition spends 6 hours with their healthcare team and 8754 hours a year without. Traditional doctor-patient relationships disempower individuals. Design explores, creates and tests new ideas. The challenge has been set to create a visual test result, empowering individuals to understand their condition.

RESEARCH

Those Who Came Before “To design or implement a tool equivalent to an existing one.. with the implication that doing so.. is a waste of time.” The Jargon File (1997) describing ‘Reinvent the Wheel’.

More Than “An App for That”

Before being able to decide how a design approach can truly assist a project, an awareness must be made of what other services exists. This means more than just avoiding reinventing the wheel. It remains critical to understand what services are well provided to people living with diabetes. Services such as X-Pert Health, based in England, aim to “develop the knowledge, skills and confidence of participants” in managing their condition. The service revolves around structured education & goal setting.

Apps are programs for mobile phones and tablets that allow for thousands of different tasks to be undertaken.

A simple search of the Android phones app store, a major part of the market, turns up over 146 applications with the words ‘Diabetes’ alone. Not a single app has more than 500,000 downloads, which could represent no more than 0.1% of the world population who live with diabetes.

This service was shown by Deakin, the creator, to be the most clinically effective education programme. Given its person centred approach, effectiveness and continued expansion in Scotland it would only be doing the same work as others to use learning as a core component of the project.

The project also needs to seek ideas that are being implemented in unrelated fields. When discovered they could perhaps seed new ideas to benefit both health care professionals and individuals whilst being supportable in the long term.

Beyond phones, the SCI-Diabetes is a digital information network in Scotland. Since 2002 it has ensured a national sharing of diabetes data. A website allows individuals to interact with their own medical results, including presenting them in visual form. However, the website only sees a fraction of monthly visits compared to GP visits of the 258,570 people living with diabetes in Scotland today. Both require access to technology, which may suggest a techology based approach could act as a barrier for some.

“Too many people I meet assume that being innovative means ‘adding technology to it’.” Thackara (2006).

This problem is highlighted by searching for physical, visual test results. The only results being design calls to action or competitions. Simply, websites and Apps have been the main focus of design on this topic.

Teague, Stay Well

Researching with People “[Designers] ‘reinventing the wheel’ by ignoring evidence and field experiences.” Vincent (2009)

Wired Magazine, Bloodwork Makeover

When reading about the context of a project and researching examples that might provide us with ideas, it might be tempting to skip talking to people and get on with designing. However, this would be setting the project up to fail. By their nature, ideas can happen at any time and some can be more difficult to shake than others. To combat this, an idea bucket was created. It provided a place for ideas to wait until the project was ready. The most critical part of a research phase is to make individuals real. Sharing their stories with both the individuals and the

This appears to limit access for some individuals. They are a source of inspiration to how visuals can aid understanding, with some reflecting the work of Tufte (2001), showing scale and providing context. Though none go as far as the ubiquity envisioned by O’Grady (2008).

HealthEd, Health Summary

healthcare professionals involved. Using tools as simple as lego pieces, pens and paper, interviewees can be guided to explore and discuss how they perceive both their own actions and how they interact with others around them.

The key is to not only find valuable information, but to research the situation at hand through the people who are actively involved. Researching with people allows design to place people at it’s centre.

Talking Tools Project used kits including Lego, pens and post-its to help individuals explore their experience of diabetes.

Written records during the interviews, helped break down their experiences into key information to reflect in final design.

Information was continually revisited and communicated with others, creating a growing understanding.

Must Go to the Mountain Montrose Health Link Centre

DiabetesUK Dundee Support Group

And for Each an Interview “Interviews involve more than just interviewing.. It is the core of the interaction.. but there are other techniques.. to get at hard-touncover information.” Polaine (2013)

To be able to research with people, two things are paramount. Most importantly, you must go to where the people are. Researching with people is not possible with no contacts.

barriers when speaking with individuals. Visiting Diabetes support groups alleviated this concern, being within an environment in which individuals are already actively empowered.

Through Dr. Kramer the project had access to a GP practice situated in a community health centre. This created an interesting mix of professionals and staff not normally seen at a GP’s practice.

In either circumstances, a designer must observe, listen, question and be ready to provide answers. These visits served not only as introductions to the real situation, but opportunities to bring people into the project.

Whilst both individuals and healthcare professionals were present, being within a medical environment could create

A successful trip would include turning a participant into an advocate for the project, opening up new contacts.

The first critical component of researching with people is proper, informed consent. Working within both University and GPs Service Implementation ethical procedures the project can provide protection, such as protecting individuals’ identities.

Playful tools such as lego allow interviewees to ‘act out’ how they communicate with others.

To ensure a proper understanding is created, it is important to interview both individuals, healthcare professionals and those who support them. However, interviews can be more than just questions. Talking tools can help uncover deeper information.

Opportunities to reflect on past experiences can also be explored. Discussing, and recording, strengths and weaknesses proves critical to understanding priorities and responsibilities.

These techniques provided the information used to highlight important factors to consider when designing.

Observing Relationships “People don’t ‘use’ a healthcare professional.. [they] enter into a relationship with professionals and service providers, and their interactions produce [together] the service experience.” Polaine (2013)

When observing a medical practice, it became clear that work is structured to best support the work of the doctors. All staff and perhaps unusually even the manager, ensure that as many individuals as possible can meet with the doctor when they are in need. It was observed that there is a pyramid of not people, but priority. These priorities form a clear divide between admin & medical, vocational & doctorally educated and those who are found in between. This internal working structure seems to have a knock on effect towards the relationships doctors can strike with both staff and individual they treat.

For Doctors’ Eyes Only? Medical data was previously for trained eyes alone. However, systems are developing to allow access by the individuals living with these conditions.

The raw test result data.

Respect for doctors appears to form part of the barrier to equal, adult relationships. Though other factors such as their level of knowledge may also contribute. When considering other individuals and nurses, another view becomes apparent. The time constraints faced by doctors coupled with professional responsibility to advise on an individual’s health may create this rift. Perhaps by providing a better footing of knowledge & responsibility, this relationship could be encouraged toward a more equal setting.

When it comes to the raw medical information, the systems are designed largely to be understood by trained health care professionals. Raw test data is digitized and only results that are abnormal are highlighted.

However the SCI-Diabetes system seeks to make this easier to read. It provides a structure and offers visual manners of displaying test data.

The doctor view of medical information.

SCI-Diabetes view that allows sharing.

These systems however force a break from facial expressions, highlighted as 55% of communication by Mehrabian (1971). This creates a difficultly for an individual in trying to understand their doctor.

Finding True Stories

Family Matters

These stories represent snippets of both people interviewed, and the work of other designers (with special thanks to the design council) who have interviewed individuals with diabetes.

Simon is 74. He retired at 65 to begin caring for his late wife Anna, who was diagnosed with vascular dementia. Living with type 2 diabetes for 17 years, Simon’s condition improved whilst being her primary carer. Her frailty reinforced the importance of his own health.

Stories are not created to be a completely accurate version of events, for instance names, location and ages are changed. They are the truth behind the stories; Challenges faced or situations known by real individuals. The purpose is not to mislead the reader, but to respect and protect the privacy of individuals who have said, at times, deeply personal and meaningful information about themselves. Only Dr. Graham Kramer has remained identifiable. Moreover each story is not necessarily the product of a single interviewee. Some combine elements of research that observation proved had merit or are the combination of several people. Graham’s story itself highlights general challenges faced by GPs in Scotland.

Simon’s Story

Simon began learning more about diabetes. He researched how to manage the condition and his understanding was supported by his previous career as a lab technician. By Simon’s 71st birthday, Anna had passed away. In grief, Simon’s health soon was affected. His results became erratic and it was difficult to perceive a connection between them and his life. Simon has began to attend diabetes support groups. He feels he can offer good advice to many of those attending, though he prefers to talk about his medical struggles rather than his late wife. Simon hopes that with the right answer, he can get his condition back under control.

A Wrong Move

Morag’s Story

Morag is 63. She had always lived in the same town until Morag and her husband moved to an assisted living community to be closer to their family. Morag lives with type 2 diabetes. This was well supported by her healthcare team. However at her new practice, her tests are taken by a health care assistant and she misses the opportunity to discuss her condition with a diabetes nurse. She finds that the time she is given is the new practice with the doctor is too short to have a meaningful discussion about her condition. For example, at a recent hurried appointment with a GP there was a increase in her medication. Morag feels this would not be necessary if she could make a plan to improve the management of her condition alongside her GP.

A No. of Troubles

Clare’s Story

In Whose Hands

Graham’s Story

Clare has been in Arbroath since she was born 42 years ago. She lives with her partner of 25 years and prides herself on being a good mother to her two children.

Graham has been a Montrose GP for 16 years. He is passionate about helping individuals take control of their health care, from ‘his hands’ into ‘their own hands’.

Clare struggled through school, leaving with poor qualifications at 16. After several years searching, her chatty social skills allowed her to find part time work as a barmaid. At work, she lets the tills do the counting.

He works from 8am to 7pm in a day. During which he can see up to 40 people, though he makes sure to provide additional time for individuals managing conditions that will last more than a year.

Clare and her partner enjoy a saturday on the sofa and use the car whenever they leave the house. Clare’s favourite shows include lifestyle reality tv. Other people’s bad habits make her feel much more secure in her own health.

Working with these individuals, he attempts to discover their own priorities rather than set goals for them to reach. However, he finds that often a lot of consultation time is taken attempting to explain medical information rather than discussing the actual challenges they face.

Clare was diagnosed with type 1 diabetes at 38. It’s been difficult to understand the diagnosis. Doctor appointments just leave her feeling confused. Clare now walks to work but feels unsure what else to do.

Explaining test results is a particular difficulty. It seems that for some individuals, using numbers or medical language only alienates them. Spending less time tracking information would mean more time listening to and allowing them to involve themselves in managing their condition.

Designing with Stories These stories were created so that during the project it was clear in the teams minds not only who was being helped but also the challenges they face. Stories were fact driven reminders that the project could, and should, have real consequences. They also allow sharing, they provide a way to engage with both other individuals and professionals. Creating conversations that not only highlight an existing situation but can challenge preconceptions about people and their actions. They can also prompt more depth to be included in a story. On top of this, they can be used to place yourself in the shoes of an individual and explore how they would see an idea. They provide a way for interviews and observations to both inspire and challenge new ideas.

Stories become a way of showing the benefits and limits of the new design. As Brooks highlights, they provide a sense of history and purpose to ideas.

A Planned Check-Up This is an example of an invidualâ&#x20AC;&#x2122;s view of receiving a check up for diabetes. It lists the major events that could occur at each stage. Finally, it highlights how much of the year an individual is left to their own management of their condition.

Check-Up Scheduled

1-5 Days

Letter Phone Walk-in

Check-Up Health Tests

2-3 Weeks

Health Health Checks Questions

In contact with health centre

Check-Up Consultancy

6-12 Months

Managing own health

Share Discuss Agree Results Results Plan

In contact with health care team

Remaining 8754 hours in the year

Moragâ&#x20AC;&#x2122;s Check-up

Waiting for Check-Up

Meeting the *H.C.A.

A Doctors Appointment

Trying to Find a Voice

Morag knows when she is owed an appointment to monitor her condition. She has the date circled in the calendar and calls ahead to ensure her tests are taken.

Morag arrives early and is seen quickly. She has a pleasant conversation during her tests and the HCA is certain the Doctor can answer her questions.

Weeks later, Morag meets her Doctor, after waiting 25 minutes. He repeats the test results to her and says her medication will have to increase to compensate.

Morag collects her pills and tells a sympathetic pharmacist her long story. They recommend a better diet but Morag feels alone in trying to make changes.

Afraid Past Repeating

Hopeful of Answers *Health Care Assistant

Just More Pills!!

Am I Being Ignored?!

KEY INSIGHTS Excellent resources in education and goal setting are already available.

Doctors’ high level of respect makes an equal relationships difficult to foster.

There are tech enabled options to help monitor diabetes, but they are not very widely used.

People don’t “use” a doctor, they both enter into a relationship around the service.

Medical data is increasingly available to those individuals who live with diabetes.

Both doctors and individuals want better conversations during consultations.

Visits are important to discover the real situation but also recruit for the project.

Doctors want to see increased understanding by individuals.

Looking at screens during consultations breaks the line of communication. Work at a GP practice is structured to maximise individual’s time with doctors.

Individuals want to receive the best advice possible, that is most relevant to them. Design turns what is heard and seen into stories, used to create, test and improve ideas.

DEVELOPING IDEAS

Developing an Idea “Imagination is more important than knowledge. For knowledge is limited, whereas imagination embraces the entire world, stimulating progress.” Albert Einstein (1931)

Drawing Inspiration

Once a project has a good understanding of who, how, where, when and why they are helping, it is finally time to actually begin imagining how new ideas may bring changes that both individuals and healthcare professionals desire. Design also brings the opportunity to take lessons learned elsewhere in unrelated work. Previous work for a social innovation charity, sought to explore how individuals could be supported in talking about their own experience. This project will develop ideas to place this on an equal setting to the visual, medical information.

In creating initial sketches, the project sought examples of engaging, informative visuals.

Exploring examples from dentistry, infographics, apps, websites, magazines, maps, graphs, charts, weather stations, wallets, interior design, car dashboards... Design doesn’t just look for obvious ideas, it is open to the unexpected. These inspirations are sketched and short descriptions are given. These

Service design draws on tools and techniques to help generate ideas. From writing down as many ideas as possible, to combining an unrelated service with a problem in the project. The idea is to create visual ideas that can be shared by those involved in real situations.

It is this interaction, between designer and those who will be affected which is unusual in the design field. It allows discussion to continue throughout the project, developing ideas towards an actual impact.

descriptions help communicate how a simple idea would function. To illustrate; the classic london underground map could be used as a visual metaphor for individuals traveling towards improved test results. In early stages, these sketches are always kept to a very low quality. It not only allows for a very large number of ideas to be included in the project, most importantly, it prevents the designers from becoming too invested at an early stage with a single idea. It helps avoid the difficulty of perhaps needing to later “kill your darlings”.

Generating New Ideas The first stage of developing ideas is intended to be as varied and creative as possible. Using metaphor, shapes, combining results and colours, even suggesting changes to the who, how and where a consultation takes place.

“Test Results? I let my Doctor handle that. All I really need is a thumbs up or thumbs down, am I doing okay?”

Clare’s View

Keeping Ideas Human “[To create] appropriate, more breakthrough solutions, the design team must understand the problem both mentally, and from a connection to deep thoughts and feelings.” IDEO (Human Centered Design Toolkit, 2011)

Working Feedback

To allow the project the best chance of success, it is important to keep the actual people being designed for at the heart of each idea. This means thinking about how a person may understand, think, feel and interact with each idea. The stories already created by the project are a valuable way of ensuring this. They create a ‘real’ person, with a life and specific needs of their own, who can be continually empathised with. The purpose is that through this process, ideas can be improved until they actually become valuable parts of the stories themselves.

Whilst gathering feedback for ideas it is important to remember that this is not a popularity contest. Ideas are in part another way to uncover more about why people have certain preferences. Responses should be taken for more than what was said, but also why it was said. It is the values and influences they uncover that can be invaluable to creating a final design. Timing can also be critical when seeking feedback. For example, breaching the topic of doctor-patient relationships in

Design goes even further, encouraging putting on an act. Becoming Morag, or Graham, two designers can play out how both may interact with each other through an idea. This also aids as a reminder that this Visual Test Result will form part of a larger conversation. It is important to seek and differentiate both sides of this. Keeping in contact with both previous interviewees and reaching out to new people. The project keeps learning how people interact with the ideas.

a public environment is perhaps not the most sensible approach. Timing can even be beneficial to the project. Taking ideas to a group environment, for example a diabetes support group. Occasionally feedback can be so strong that in itself it could constitute a new idea. It can also be useful to many other separate ideas. The challenge becomes a balance between working towards a final design, and developing the right idea. The end result of this information is deeper, more meaningful stories. They allow explaining, and showing the true value of what is being created.

Listening to Feedback First exploring the feedback generated through emails and direct contact with individuals as well as medical professionals. This was incorporated into fresh design, with some new ideas added, checking improvement with all involved.

“It would be good to be able to gauge how well the information has been understood by an individual, perhaps on a 0-10 scale.”

Graham’s View

A Service, not an Object “The nature of services is different to that of [objects]. Individuals using the service are included within the service itself.” Løvlie (2013)

Designing Compromise “Our project ended up in a cul-desac. It worked brilliantly, but no funding was found by our clients to spread the idea. If done again, we would being our own search for our own way forward.” A Head of Design describing how project need support beyond simply a design.

Test Results are themselves an object, but they also form part of a service. Currently, they are a method of sharing information between the testing facility and a GP’s practice. In essence, this project is developing a method for this to be given to an individual, in a way they can understand.

Looking at solely the service is still too narrow a view. A service only exists within several people’s individual stories. The project has made use of this, providing not only testing through our research, but also as a draw on inspiration of how individual needs can be met.

Services are not static. They are by people, who act within the service, have expectations and feel whilst they interact with that service. Design can improve on each aspect while developing ideas.

Whilst creating a physical test result, it is important to explore how this evidence of using a service can transform understanding of what is happening. Not only during the service, but inside of an individuals body. It is proof that now can be easily shared.

During the development of a design, varying levels of quality can be made use of. Starting with simple sketches not only makes ideas quick. It can make design appear ready to change, prompting people to be comfortable to suggest changes.

to implement today. Sometimes the existing process simply makes a choice a dead end. Other ideas rely on creating entirely new organisations to be constructed. Ideas have little value when not compromised to be made real. The design must to be certain it can last.

As the design progresses, more formalised designs can be used. These provide the impression that a design is becoming real. Aiding people in imaging exactly how it could be used. This balance of low and high quality is carefully managed throughout a project.

The project made it clear no one solution would work for anyone. To make multiple solutions, the design must be have a formal, logical structure. That way, when adjusted for an individual it can still present the same information.

Not all ideas are actually possible

Finalising a Structure The final stage was concerned with both representing further feedback and making a standardised structure. As designers this provides a chance to reflect upon how generated ideas were represented in research of the project.

“This gives me the chance to see how my condition is really doing over time, it helps having something to point at and say see!”

Simon’s View

KEY INSIGHTS Presenting people with something visual provides strong, rapid engagement.

Consultations are the services, formed by people. Visual test result are only proof of this service.

Written feedback can be misinterpreted, It is critical to follow up with visual changes.

Both parties have ideas of what each other need. Design allows testing of what is correct or false.

It is not enough to simply follow feedback, it must be analysed to understand why it was given.

Feedback is not a popularity contest. It’s an ongoing conversation about what is useful.

Individual’s need to understand such a complicated subject vary from good/bad to technical.

Low and High quality sketches are reacted to in useful ways.

Doctors desire visual ways to gauge individual’s understanding and their reactions to information. Design needs to be not only certain that it is providing value, it must find a way to make it last.

Acting is part of designing. Using the stories, two designers can interact as if they were from them. Ideas can come from expected avenues, as well as the bizarre, the impossible and the fantastical.

FINAL DESIGN

What It Is A Visual Test Result of medical information and individual experiences.

See Appendix: XI

What It Does Informs individuals, aids communication and highlights experiences.

A Visual Test Result that consists of medical information taken during diabetes checkups, alongside the personal experiences of individuals

See Appendix: XII

The Visual Test Result has four important goals. Most importantly, it identifies the individual who the test is for. Partly preventing confusion and shock of receiving the incorrect test data. In providing test data, it is informing individuals directly of the condition of their health, in relation to managing their condition.

How It Works Generated by SCI-Diabetes, printed by GP/Test Centre and mailed to individuals.

The data used for the Test Results will be taken from the SCIDiabetes network. Additionally, through the My Diabetes My Way platform, the visual test results will be generated. This will ensure automation for every individual in Scotland with diabetes.

living with diabetes. It is mailed to individuals before attending a check-up consultation.

See Appendix: XIII

It improves communication. Between individuals and their doctors. Individuals and other health care professionals. Even Individuals and those who care for them. Finally, it allows individuals to add, and place importance in, their own experiences and empowering them. This could be both directly seen by an individual, it could also be mailed from either the test centre, or the GPs, depending on what proved economical. Individuals would receive their results roughly 3 working days before their consultation, providing time to understand and add their own experiences.

Final Design

Critical Details

Consisting of three sections, this design puts medical and life experience on an equal footing. The full final design is found in Appendix X-XIX.

At the top of the design is the most important information. It explains what the test is, who it is intended

Diabetes Test Result

Visual Test Results Medical Information takes up the central portion. Results are divided into Low, Medium and High risks of complications based on the Year of Care. Six alternatives are offered to provide for individual preference. They range from only risk levels, to label bodies (pictured), to detailed historical graphs of results. It also tracks three clinically important features; Eye and feet checkups as well as risk through smoking.

Patient Information Name

Dr Graham Kramer Link Health Centre Montrose, DD10 8TY Phone: 01674 673400

Maisey Smith

Gender F

Age 58

DOB 03/07/1956

Medical Information Low Risk Kidney Blood

Blood Pressure

Kidney Urine

Cholesterol

Weight

Blood Sugar

Medium Risk

High Risk

Eyecare Checkup <12 Months

Footcare Checkup <12 Months

Smoking Passive Smoker

Want to talk about? Communicating

Lifestyle

Diet

Moods

Exercise

Love Life

Iâ&#x20AC;&#x2122;d also want to discuss

for and the Doctor who ordered it. It also provides the practice phone number, for individuals the test worries.

Talking Points The final section consists of the individualâ&#x20AC;&#x2122;s experiences. This allows them to be seen as equally important as medical information. It also allows individuals to prepare information for their consultations. Three options are available. Icons to highlight as good or bad, Topics important to discuss or Goals the individual see as important to their health. It also provides an additional space for anything else to discuss.

Who It Helps The NHS, medical professionals, individuals living with diabetes and those who care for them. Printing and sending test results may increase job pressure on admin staff.

See Appendix: XIV

Where It Helps At home, in consultations and with conversations.

For medical professionals, Visual Test Results provide a new tool to not only prepare individuals for consultations. It provides an object to point to, have conversations around and removes the need of turn to computers during consultations.

See Appendix: XV

Before consultations the final design provides a level of awareness to individuals of what their test results are and what that means. This allows more time to be spent talking about the individuals experience of life, and provides a visual reminder of what this entails.

For individuals, it does all of this and more. It serves as a reminder of their last consultation, and provides a way of sharing with those who care for them who were not present. For the NHS improving health has both a financial and intent value. It also provides an example of how visuals could be put to greater medical use.

See Appendix: XVI

It remains with the individual as physical proof of the consultation and test results. Providing a window to their health on that date. Finally, it provides something to talk about, with family, friends and other individuals living with diabetes.

Check-Up+ This is an example of how the design changes an iindividual’s view of receiving a check up for diabetes. It lists the major events that could occur at each stage. It highlights how the Final Design is kept by an individual, physical proof of their experience.

1-5 Days Check-Up Health Tests

Check-Up Scheduled

Letter Phone Walk-in

2-3 Weeks

Health Health Checks Questions

6-12 Months

Visual Test Results

Check-Up Consultancy

Managing own health

Recieve Read Add to Results Results Results

Discuss Agree Results Plan

Use Results

In contact with health centre

In contact with health care team

Remaining 8754 hours in the year

Morag’s Check-up+

Waiting for Check-Up

Meeting the *H.C.A.

Armed and Ready

A Girls Support

Morag knows when she is owed an appointment to monitor her condition. She has the date circled in the calendar and calls ahead to ensure her tests are taken.

After taking her tests, the HCA informs her has the option to receive her results at home. With a little reassurance, Morag awaits her results.

At home Morag’s granddaughter sees her results. She offers to help her exercise. Her Doctor welcomes the idea, advising to take it slow.

Morag now has a new goal, to teach her granddaughter garden badminton. It is not a lot, but her test results are pinned to the kitchen fridge. She can keep trying.

Afraid Past Repeating

Doctor Best See Me *Health Care Assistant

A Conversation!

‘Get Out of Red!’

KEY INSIGHTS A Visual Test Result is adaptable, offering several different visualisations to provide choice. It informs individuals, helps them understand their risk and improves communication. It empowers individuals, valuing their experiences and preparing them for consultations. The SCI-Diabetes network could supply the data and automate the creation of Visual Test Results. The Results would be received approximately three days before a consultation. After consultations, it remains as a reminder and could be used to discuss with other individuals.

Diabetes Test Result Patient Information Name

Dr Graham Kramer Link Health Centre Montrose, DD10 8TY Phone: 01674 673400

Maisey Smith

Gender F

Age 58

DOB 03/07/1956

Medical Information Low Risk Kidney Blood

Blood Pressure

Kidney Urine

Cholesterol

Weight

Blood Sugar

Medium Risk

High Risk

Eyecare Checkup <12 Months

Footcare Checkup <12 Months

Smoking Passive Smoker

Want to talk about? Communicating

Lifestyle

Diet

Moods

Exercise

Love Life

Iâ&#x20AC;&#x2122;d also want to discuss

THE VALUE Reduction in Spending on Complications

Apply Visuals to Other Conditions

Reduced Complications Inappropriate Emergency Calls

Funds Available for Prevention

Condition Groups Feel Cheated

Print Cost Target Individuals at Risk of Diabetes

Paniced by Results Patients Share Results

Individuals Helped in Improved Understanding *S.M.

Satisfaction Seeing Individuals Improve Time Still Required to Explain Test Results Increasingly Organised

Better Conversations

Individual De-rails Consultation

Improved Health Results Cause Greater Confusion Share Personal Experience Only See Nurse, Never Doctor

Design for Care “Health is personal and universal - it may be the one value everyone cares about.” Jones (2013)

The right to health is the 25th Article of the Universal Declaration of Human Rights. It is more than a preference, it is the minimum expected and this projects ‘final design’ support just that, health. When examining the value of the project to individuals, healthcare professionals and even the designers themselves, it is critical to revisit the context. Individuals healthcare is largely in the hands of the medical professionals, especially those without access to technology. This Visual Test Result not only provides

Equal Adults? “Doctors shut off their child (emotional) aspects, to concentrate on medicine. Patients, facing the powerlessness of illness, favor being the child to care for their fears and worries.” Zigmond (2012)

To properly ascertain if Visual Test Result are able to help empower patients, first a trial need be undertaken. Plans of which are mentioned in the projects next steps. Once an individual has knowledge, being informed they themselves understand, as well as an agenda under their control, it is clear to see that the possibility of the relationship with their

them with information, it places a visible emphasis on their own experiences of life. In short, it makes their health and life combined known to them. Doctors have long been expected to be holders of knowledge and increasingly face treating more and more long term conditions. Sharing this burdeon allows them to spend more time listening and discussing, than informing and advising. With these better conversations, their professional pressure may be reduced.

As for the designers, they have been given the chance by those involved to be alongside them in their worlds. Giving design the chance to be ‘the value’ to health.

doctor beginning entirely differently. This may have benefits to doctors as well. In addition to being able to conduct a consultation where both parties are able to be evaluative(adult). It may relax the need for a doctor to be seen as authoritative, allowing their emotional(child) self to become part of a fuller doctor-patient relationship.

Value, in Context In practice, Visual Test Results may have further, more important implications. Taking account of the background & context. The research & development of ideas. This diagram explores some of the anticipated consequences.

The diagram contains benefits, but also negative implications that could arise in everyday use. A particularly important factor that

Reduction in Spending on Complications

Apply Visuals to Other Conditions

Reduced Complications Inappropriate Emergency Calls

Funds Available for Prevention

Condition Groups Feel Cheated

Print Cost Target Individuals at Risk of Diabetes

Healthcare professionals

Time Still Required to Explain

Patients Share Results

Test Results Increasingly Organised

Improved Health

Discussed not Advised

Better Conversations

Individual DeRails Consultation

National Health Services

Panicked by Results

Individuals Helped in Improved Understanding *S.M.

Satisfaction Seeing Individuals Improve Individuals

was highlighted by one individual was test anxiety. Receiving poor results through the mail could be a large shock. Measures would have to be taken to lessen this blow.

Results Cause Greater Confusion

Only See Nurse, Never Doctor Share Personal Experience

Expected Benefits

White

Anticipated Implications

Black

Affects Individuals, Professionals & NHS *Self-Managing

KEY INSIGHTS Health is valuable to everyone involved, this Visual Test Result support good health. For individuals, it brings some of the knowledge held by doctors into their own hands It may bring more equality in consultations, reducing stress for both parties Both the NHS, Individuals and Doctors will benefit from Visual Test Results by helping selfmanagement. It is anticipated that some negative implications may occur. It is expected that Visual Test Results would easily justify their cost to the NHS.

February

August

NEXT STEPS Patient Achieving Goals

Doctor - Patient Communication

Not One Solution

Funding

Productive Consultancy

Recruiting More G.Ps

Other Long Term Conditions

Evidencing

Statistical Risk

Public Engagement

Horizon 2020

Test Results Interaction

SCI Diabetes

Proving the Point â&#x20AC;&#x153;Respondents [from the field of service design] were unable.. to provide robust.. case studies of impact and there appears to be no common.. framework for measurement.â&#x20AC;? Design Council (Scoping Study on Service Design 2012)

Making More Impact To increase our Impact, the project will need to be able to find support through Dr. Graham Kramer. Visual Test Results need the NHS, other fellow doctors and Nurses, as well as those living with diabetes. Charities such as DiabetesUK could open many doors and become an advocate. The human element becomes even more critical as the project turns from design into reality.

Before being able to secure any funding to take the project into its next steps, a small scale trial will need to occur. During the first week of August, the project plans to work with our partners to outline the structure of the trial. Recruiting will occur during the initial contact with individuals due their checkup, as well as during the initial test taking appointment. To measure the impact of the Visual Test Results, we will continue to use the same techniques employed so far in the project. Taking interviews and creating stories from the truths we are told.

A trial proves the concept, but to bring it to people living across Scotland with diabetes today., money, partners and a plan are required. Once a trial has been completed, tenders for funding can be created. The aim would be to design, develop and implement a working system that could scale up across Scotland and reach every individual living with diabetes. This would likely work through the SCI-

As compelling as stories can be, they are not enough to bring the project to everyone living with diabetes in Scotland. To discover the full benefit, a trial could be undertaken over a longer period. By comparing the experiences of individuals, as well as their medical data, to others who do not have access to Visual Test Results, a more enriched picture can be created to convince the NHS of the value of visualising medical test results.

Diabetes system and entail 9 months work. Contacting a mixture of funding providers, social innovation funds and charities, the project could entertain the support and resources of many different kinds of organisation. Finally this report and the current prototype are openly available to interested parties in the hope that further projects can grow from what was learned.

Learn, Repeat, Improve “[The perpetual beta] is a radical position.. in which the product is developed in the open, with new features [added] on a monthly, weekly, or even daily basis.” O’Reilly (2005)

Given a completely successful trial, the ‘final design’ would still not be final. The design would seek to be continually be improved whilst being used, actively learning from individuals and healthcare professionals who interact with the project. Information gathered through qualitative interviews would form the basis of a set of stories that would in turn spark ideas on if, and how, Visual Test Results improve communication during consultations. Outside of consultations, individuals may use a their Visual Test Results

Share the Lessons

In June the project presented its initial work at the 3rd Annual Health Literacy conference at Keele University. A mix of healthcare professionals, academics and advocates. Our presentation represented a project with deliberate design approach, the only example at the conference.

This report may offer an idea on how this could change. If more was written for the individuals being impacted, it could help encourage them to become advocates of our work.

in other ways. Such as using them to talk with other individuals living with diabetes or their family members. This could provide new insights into what could help individuals self manage.

Care must be taken to not over complicate, making it difficult for individuals to get to grips with their first Visual Test Result. With this in mind, continual improvement of the design could allow for an even greater impact. Furthering ideas to empowering individuals living with diabetes.

Regardless, educating other designers on successes is critically important. Doubly so for mishaps and stalls in a project. In the coming year, we plan to write specifically for this audience, regarding the challenges faced by small teams tackling huge issues. Finally, our critical partner Dr. Graham Kramer. Through further discussion the hope remains that not only the project can be promoted through his advocacy, but also the value of using design to face the medical challenges of Scotland today.

THE PLAN During August a small scale trial will be undertaken to ensure that the expected benefit to consultations between doctors and individuals is found. Qualitative interviews with both parties will form the basis of our findings. If proven successful, our research will be recommended to interested parties at Nesta and in the SCI-Diabetes network. We will aim to promote our work via Graham Kramer, through the Scottish Health Literacy Platform. The next stage of the project entails a technical development of the SCI-Diabetes platform as well as a longer term study exploring any lasting effect on individuals ability to selfmanage their condition. We hope to be able to bring Visual, Relatable Test Result to all individuals living with diabetes in Scotland.

BIBLIOGRAPHY APPENDICES

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-%202012%2005%2009.ashx [Accessed 26 July 2014]. P. Reason, J. Heron, (2001). The Practice of Co-operative Inquiry: Research with rather than on people. Chapter 16 of P. Reason & H. Bradbury (Eds.), Handbook of Action Research: Participative Inquiry and Practice (pp. 179-188). London: Sage D. Schillinger, et al. (2002). The Association of Health Literacy with Diabetes Outcomes. Journal of the American Medical Association 2002 Jul 24-31 Chicago: AMA J. Schneider, M. Stickdorn, (2010). This is Service Design Thinking. Amsterdam:BIS Publishing SCI-Diabetes, (2014). My Diabetes My Way. [Online] Available at: [Accessed 21 Feb. 2014]. LM. Scwhartz, S. Woloshin, (2013). The Drugs Facts Box: Improving the communication of prescription drug information. PNAS [Online] Available at: http://www.pnas.org/content/110/Supplement_3/14069.full [Accessed on 18 Feburary 2014] Scottish Government, (2007). Better Health, Better Care Action Plan. [PDF] Available at: http://www.scotland.gov.uk/ Publications/2007/12/11103453/9 [Accessed on 18 Feburary 2014] Scottish Government, (2009). Health Literacy - A Scoping Study Final Report. [PDF] Available at: http://www.scotland.gov.uk/ Resource/Doc/296717/0092261.pdf [Accessed 25 July 2014]. J. Thackara (2006) In The Bubble: Designing In A Complex World. Cambridge, MA: The MIT Press E. Tufte, (2001) The Visual Display of Quantitative Information (2nd ed.). Cheshire: Graphics Press E. Tufte, (2006) Beautiful Evidence. Cheshire: Graphics Press. S. Vincent, (2009) [Do designers make good social innovators?]. [Online] Available at: http://blog.la27eregion.fr/Les-designerssont-ils-forcement (In French) [Accessed 28 July 2014]. Wired, (2014). The Blood Test Gets a Makeover. [Online] Available at: http://www.wired.com/2010/11/ff_bloodwork/ [Accessed 19 Feb. 2014]. R. Wurman, (2014). Understanding Change and the Change in Understanding. British Innovation Factory. [Video] Available at: http://vimeo.com/96122063 [Accessed 25 July 2014]. D. Zigmond, (2012). Transactional Analysis in Medical Practice: Part 1. [Online] Available at: http://www.marcolearningsystems.com/pages/david-zigmond/v3-transact1.htm [Accessed 30 July 2014].

Appendix Stories - Family Matters Simon’s Story Simon is 74. He worked for over 40 years as a lab technician in Schools and Hospitals and was asked, politely, to retire at 65. He decided to accept the offer as his wife was becoming increasingly frail. Eight months later, Anna suffered a minor stroke. Soon afterwards, she was diagnosed with Vascular Dementia. Simon had been diagnosed himself with Type 2 Diabetes at 47. After a few rocky years attempting to get his condition under control, he found a balance of eating, activity and the support of his wife allowed his condition to be largely manageable. His doctor was instrumental in supporting him in this. Given his technical background, he had a fair understanding of medical language. Together they could discuss the risks of failing to follow the doctor’s advice. For between his 55th birthday and his retirement, Simon remained largely symptom free. As Anna’s condition progressed, Simon’s condition seemingly improved. Having to provide almost constant care to his frail wife reinforced the need to guard his own health. However, during brief breaks afforded to him by his two sons watching their mother during the day, Simon felt increasingly anxious about his own health failing. Simon began adjusting his own strategies without the advice of his doctor. He researched new eating habits and exercises, but kept to his current routine. Simon created an emergency pack whenever he left to house, to avoid the possibility of becoming Hypo. This being when the energy available in the blood is insufficient for the body’s needs. Being a Type 2 Diabetic, this would be very unlikely to happen, as having too much energy in the blood is almost ubiquitous. By Simon’s 71st birthday, Anna had passed away. Now facing the absence of his old routine, and Anna, Simon’s health began to be affected. Whilst grieving, his results have became erratic. Simon has began to attend Diabetes Support Groups. Whilst he feels he can offer good advice to many of those attending, he prefers to discuss his medical struggles, preferring to not mention his late wife. Simon remains on good terms with his medical professionals. He hopes with the right answer, he can get his condition back under control.

Stories - The Wrong Move Moragâ&#x20AC;&#x2122;s Story Morag had lived in Leuchars since the day she was born, till her 63rd birthday. However, as her husband Art retired they made the decision to move into an assisted living community near Dundee. Relocating to Monifieth, Morag found part-time work managing a small charity shop. She was happy that their new home allowed Morag to travel into Dundee, where her youngest daughter lived with Moragâ&#x20AC;&#x2122;s 7 year old granddaughter. Whilst their community has been very welcoming, and they are proud to still be living in their own hope, not every part of the move has been as smooth. Morag had been diagnosed with Type 2 Diabetes on her 62nd birthday. Her then doctor in Leuchars had taken the time to explain the condition to her, and she met with a nurse bi-monthly for the first year of her life to help her manage the changes she needed to make. However, on moving Morag and her husband both had to find a new GP. Their new doctor was the only GP available in the local area. Having no choice, they attempted to schedule an appointment. After waiting for their medical records to be transferred, Morag was finally given a date a month ahead to have her blood taken. Morag attended her first appointment and prepared a few questions to check she was on the right track. Her previous medical staff had hinted that in time she would need to make more changes to her diet and exercise in the future. However, instead of seeing an experienced member of staff, a health care assistant instead took her blood. He told Morag that she would have to save her questions for the doctor. Two weeks later, Morag received a phone call to ask her to attend an appointment the next day. Morag quickly had to rearrange the collection of her granddaughter from school with a trusted, if new, friend. Morag once again attended with her questions prepared. The appointment was 35 minutes late and doctor had almost no time to speak. He informed her that there was too much sugar in her blood, wrote a prescription to take 1 tablet a day, and recommended a local diabetes support group. The tablets seem to have side effect that Morag heard are big problems for diabetics. She has had trouble urinating, and has gained weight. A year later, Morag was once again called to make an appointment. She once again attended an appointment to draw blood, and a short consultation several weeks later. Her medication had to be increased. This left Morag feeling powerless and poorly treated. She feels that if she could get the support she needs, she could lead a healthy lifestyle and stop taking medicine.

Stories - A Number of Troubles Clare’s Story Clare has lived in Arbroath since they were born 42 years ago. Living with her partner of 25 years, they have a teenage son and daughter of school age. Clare prides herself on being a good parent and often puts the children before their own needs. Clare struggled in school, leaving with a handful of poor qualifications at 16. Initially, she struggled to find work, especially since many relied on an ability to read and write to a good standard. Clare did however have great social skills, which eventually allowed her to find part-time work in a bar. When working, she let the tills do the counting. Clare has never been active and her partner is much the same. They spend most of their time watching TV and use the car whenever they need to go outside. Clare particularly enjoys watching lifestyle reality tv shows. They show how bad other people’s habits are, making Clare feel less critical about their own. Clare strongly dislikes shows that tell you how to ‘be healthier’. They don’t seem to speak well about people who aren’t perfect. Clare has been living with diabetes for 3 years now. She has tried to listen to the advice that her nurse gives, who is a lot easier to talk to than a doctor. They share news and it allows Clare to talk about her life as the nurse seems more concerned, rather than just focused on test results. However, the doctor tries to keep her informed, but it mean very little to Clare. Clare is starting to realise how serious her condition is. A few of her customers getting very sick and they say it’s ‘the diabetes’. The nurse is trying to encourage some changes of behaviour but Clare finds it difficult and the medical information only confuses things. Today Clare has taken to occasionally walking to work, when the weather isn’t so bad. However, the family comes first. When they are in need the walk is the first thing to go.

III

Stories - A lot on the Plate Jimâ&#x20AC;&#x2122;s Story Jim was born 68 years ago in Dundee. After being separated from his mother by the council, he was in and out of foster homes and distant relatives houses throughout his childhood. During this period, Jim experienced neglect and abuse. This became a constant challenge in his life. Being unable to seek help to improve his mental health, Jim turned heavily towards alcohol. This became a contributing factor of his development of diabetes at 54. Through this, his doctor began to realise that Jim required support to ensure that his condition did not deteriorate. By his late 50s, Jim was finally receiving the help he needs, however he still describes himself as â&#x20AC;&#x2DC;scatter brainedâ&#x20AC;&#x2122;. He has through the open university managed to attain a degree in Scottish History which his is avidly passionate about. It gives him a reason not to drink until the evening, though this is not always case. Some mornings he simply forgets. Jim is comfortable with being open, but struggles to remember what was said to him a few hours previously, which makes following doctors advice very challenging. He attends several support groups, including one for his diabetes. He is considered nice, if a little flighty and odd. He usually prefers to do the talking, often sharing his difficult past. Today, Jim continues to live alone. He attempts to manage his condition the best he can, but he admits he struggles against a life of learned behaviours. A second diagnosis of Cardiovascular Disease brought the focus on how to manage two conditions simultaneous, as well as his mental health. It has became difficult to remember why he takes medicine and relies on a social worker to fill a pill organiser. Even still, sometimes he forgets about the box.

Conference - Abstract Visual, Understandable, Relatable: Transforming Patient Understand of Diabetes Test Results Innovations in Practice Poster. C Timlin, H Tuteja. Duncan and Jordanstone School of Art and Design, Dundee University Medical test results are often challenging for all but the most health literate patients to understand, and little in the way of support is available outside of valuable appointment time. With the ever-increasing number of people living with diabetes approaching 5% of the Scottish population, we aim to create a visual, understandable and relatable medical test result template that patients can contemplate ahead of their consultation with a health care professional. We hope that this may become part of Scotlandâ&#x20AC;&#x2122;s proposed National Health Literacy recommendations. The current approaches to supporting self-management have been driven largely by healthcare professionals. We suggest that patients have many individualised solutions to maintain and relate to their conditions and health. Our approach will accommodate with consideration to patients with language, literacy, cognitive and capability barriers to fully understand test results. Through this, we hope to allow patients to engage more meaningfully and understand the implications to their health of their life choices. Service Design is the use of Design to plan and organise better interactions between providers and participants. Tools such as interviews, workshops, journey maps, prototyping tests and gathering reflections will be used throughout the project. We shall work in partnership with the Scottish Govt. Clinical Lead in Self Management and Health Literacy and his GP practice team in North East Scotland. Together, with the patients themselves, we intend to create an improved, visual test result that respects both the demands placed upon GP practices and addresses the needs of diabetic patients. We will also examine the changing requirements of patients from initial diagnosis through their full life journey in managing their conditions and how this may affect the demands they place on understanding their test results. Based upon a blueprint created to fit this new visual test into the existing GP service, we will launch a live trial in July based upon our findings in Montrose. Given a successful trial, lessons could be learned at both the local and executive level about how visualisation could assist patients relate to their test results and their own health. We expect that this could be disseminated across not only Scotland itself, but also other conditions dependant on regular testing to track progression of medical conditions. This will help lead to improved and informed patient decisions in regards to their personal health, reducing costs and the need for medical intervention. Finally, and most importantly, we hope that this will allow individual patients to better understand their health over time and be empowered by reduced literacy demands. The risks include a possibility that a visual diabetes test results will have no improvement on patients ability to self manage their health. Key-Words: Service Design, User-Centred Design, Diabetes Literacy, Innovation, Test Results

Conference - Poster Top Section

Visual, Relatable Test Results Transforming Patient Understanding of Diabetes Test Results Authors Chris Timlin, Hanshuman Tuteja

Presenting Author Hanshuman Tuteja

Abstract Individuals currently living with diabetes may receive their test results during valuable consultation time. This provides little time to understand their impact. Understanding that may be further challenged by a low level of literacy. We aim to create a visual, understandable test result. This can be tailored to individual preferences and requirements. Test results could then be shared before an appointment, improving potential impact.

Scottish Government, Survey of Adult Literacies 2009

Portion of Scottish Residents living with Diabetes ScotPHO, 2012 Scottish Diabetes Survey

258,570

Number of Scottish Residents living with Diabetes ScotPHO, 2012 Scottish Diabetes Survey

£1bn

80% Avoidable

Complications

NHS Scotland Expenditure Relating to Diabetes DiabetesUK Scotland, State of the Nation 2013

‘‘

Present Situation

I trust my Doctor to [understand] them for me.

Our initial research consisted partially of interviews with people living with Diabetes as well as the medical professionals involved in Diabetes care. Trust was clearly an important part of their relationship. However, when viewed through Eric Berne’s Transactional Analysis, trusting the professionals to be responsible for understanding medical information could prevent a shared, adult responsibility. Education may not be the only solution. Instead of expecting more knowledge from individuals, the opportunity could be to place their expertise, their current experience of

To tackle this opportunity, we have taken a Service Design approach. This method uses interviews, idea creation and testing to examine and improve communication. We aim to trial our work on a small scale during July 2014. This will then hopefully be highlighted through the Health Literacy Platform in Scotland.

Exploring Through Ideas

‘‘

For myself, graphs work best.

‘‘

Severe Literacy Problems Partially Literacy Challenged

Our interviews and research provided the platform to begin creating ideas. We sought inspiration from obvious fields such as health applications, as well as the more abstract such as the London Underground. These visual ideas were then shared with all project participants as well as members of the general public. The key was to not seek preferences, but to discover why different ideas worked. The conclusion was a standardised test result is not appropriate. Instead, a framework of Overview, Result Details and Individual Experience is needed. Each section could then be

to individual preferences and requirements. Test results could then be shared before an appointment, improving potential impact.

258,570

Number of Scottish Residents living with Diabetes ScotPHO, 2012 Scottish Diabetes Survey

£1bn

DiabetesUK Scotland, State of the Nation 2013

Exploring Through Ideas

‘‘

Complications

NHS Scotland Expenditure Relating to Diabetes

Conference - Poster Bottom Section

Present Situation

80% Avoidable

‘‘

I trust my Doctor to [understand] them for me.

Individuals may add their own lifestyle experiences.

For myself, graphs work best.

Design Council ‘Double-Diamond’ framework

Changes from previous results may be highlighted.

Future Plans In July 2014, we will engage in a small scale service trial with Dr. Graham Kramer to evaluate effectiveness in both individual consultations as well as group settings. We will examine our success through qualitative interviews with participating individuals. If the impact is positive, we aim to work with our partners to distribute and promote providing visual test results to patients by medical professionals. We expect to seek funding to further develop the project on a wider scale.

‘‘

ScotPHO, 2012 Scottish Diabetes Survey

Goals could be agreed upon in response to test results.

Acknowledgement

We are pleased to thank Dr. Graham Kramer, Clinical Lead for Health Literacy & Self Management in Scotland for his partnership during this project. We wish to thank the staff of Ninewells Hospital, SCI-Diabetes and organisers/members of local Diabetes Support Groups as well as medical staff across the wider Tayside & Angus areas.

h.j.tuteja@dundee.ac.uk

c.timlin@dundee.ac.uk

VII

Development Idea Testing & Feedback Sample: Stage 1 Idea Two: Icons & Overall Me Medical Professional Liked this one simple with a message how results are and what their agenda is. SubmitLow (need) SubmitMed SubmitHigh I like the icons but you would need to explain about green good, amber could be better, red at risk. Add options on the discussion box. Need keys. Why risk is low/med/high. Individuals Possibly specify that you can choose 1 or more things to speak about, people may be confused as to how many topics they are allowed to choose. Also what about BMI, this does not take into account an individual with type1 diabetes who has a high muscle mass yet is not fat, thus increased BMI and increased complication risk would appear in the results ( yet this would not be the case in real terms). good example which is readable but not good for the partially sighted or dyslexic a lot simpler, and seemed quite effective for all age ranges. the images/icons are very helpful and easy to identify with. however, some people thought it was straightforward but there wasnt enough information on there. a rising concern was that there would have to be a very clear difference between the yellow and green. Like the overall human view colour coded, maybe different colours on different parts of body will help see the overview more clearly. Idea One: Tracking Lines Medical Professional This has too many lines on it to make it easy to follow. Overcomplicated looking and no clear vision to many lines. Too many line, confused. Would need multiple scales on Y axis. Good idea, simple. Looks quite clogged up though, not sure how to fix this. Chances are there would be quite a lot of overlap in results, more so than in the picture above. This might make it look even more clogged up. Is the ideal weight in relation to height? Individuals too complex to read and understand too scientific. it felt very typical, bit boring at first glance. it is definitely useful to track and target specifically, but it looks tedious to keep up with, and people in this day and age are lazy, so they might want it self explanatory. this method seems most highly effective with those who have been...more highly educated.

VIII

Development Idea Testing & Feedback Sample: Stage 1 Idea Six: Simple Meters + Own Input Medical Professional Better can see the point in this as can make goals dependant on results and track the difference made. I think it would be difficult to have enough room for people to include their own questions, this could be done on another sheet though. What do symbols mean? Categories. keeping it simple, not too crowded. Individuals This is better than idea 5 in my opinion, as giving the patient a voice for input is definitely something which is currently lacking in the diabetes clinical service. simple enough, pictorial and colour coded to show results clearly was very popular, it is simple and full of colours, but the idea of it being almost like a diary made it easy to identify and use. it was one of the most preferred ones. Designers I like the patient engagement Patient Engagement looks good Idea Eight: Speedometer Result Medical Professional Does not appeal to me. maybe because iâ&#x20AC;&#x2122;m a woman? Speedometers would give a good indication but would need each dial labelling and would use colour to indicate good, could be improved and at risk. Colour coded within with logos/icons. multiple dials not much use. HbA1 is the the only data item that is recorded routinely within SCI-Diabetes, so in order to create and populate dials for the other metrics mentioned in 1 yo would have to create additional data items and ensure that staff record the data. Dashboards commonly used to present data within health and i think provide a good format for showing current position. I think you would struggle to incorporate any info re trends which i think its important for participants to see. Eg A patient with a BMI of 30 remains high risk, but if it was 32 6 months ago good to show the improvement. For me the 3 key pieces of info for each clinical market are; 1. What is current result? 2. Comparison with previous results 3. Target result. The above should support people to set goals and make changes to impact upon results. Individuals Again I think this is a very creative idea, although Iâ&#x20AC;&#x2122;m unsure of the ease in which it can be read and results translated. Will it say on the dial which result the speedo is measuring? was a complete nono with the ladies, but the men were happier. it seemed way too mathematical and gender generic for the men.

Final Design Whole Page Example

Diabetes Test Result Patient Information Name

Dr Graham Kramer Link Health Centre Montrose, DD10 8TY Phone: 01674 673400

Maisey Smith

Gender F

Age 58

DOB 03/07/1956

Medical Information Low Risk Kidney Blood

Blood Pressure

Kidney Urine

Cholesterol

Weight

Blood Sugar

Medium Risk

High Risk

Eyecare Checkup <12 Months

Footcare Checkup <12 Months

Smoking Passive Smoker

Want to talk about?

Communicating

Lifestyle

Diet

Moods

Exercise

Love Life

Iâ&#x20AC;&#x2122;d also want to discuss

Diabetes Test Result

Dr Graham Kramer Link Health Centre Montrose, DD10 8TY Phone: 01674 673400

Patient Information

Final Design Medical Information

Name

Maisey Smith

During our research, we heard a number of individuals wanted to just hear a ‘thumbs up’ or ‘thumbs down’ from their doctor. We Gender Age 58 be meaningful toDOB 03/07/1956 took this are theFbaseline minimum that would have a conversation around for doctors and individuals with diabetes.

Medical Information Low Risk

Medium Risk

High Risk

Blood Sugar High Risk

Weight High Risk

Blood Pressure Low Risk

Kidney Blood Low Risk

Cholesterol High Risk

Kidney Urine Medium Risk

Footcare Low Risk

Eyecare Medium Risk

Smoking High Risk

Want to talk about? Things I am good with

Things I am bad with

Diabetes Test Result

Dr Graham Kramer Link Health Centre Montrose, DD10 8TY Phone: 01674 673400

Patient Information

Final Design Medical Information

Name

Maisey Smith

A Circle, results in the circle pose only minimal risk. As a result increases an individual’s risk, it ‘grows’ in size. It also provide a Gender DOB 03/07/1956 F of all resultsAge very concise overview at once.58

Medical Information

Eye ca re

Weigh t

are Footc

Medium Risk

S ug ar

l tero les

Low Risk

Blood

o Ch

od o l B

sure Pres

K id

High Risk

loo d

ey B

Kidney

Urine

ki o Sm

Want to talk about? XII

Things I am good with

Things I am bad with

Diabetes Test Result Patient Information

Final Design Medical Information

Name

Dr Graham Kramer Link Health Centre Montrose, DD10 8TY Phone: 01674 673400

Maisey Smith

Providing an image of important organs that can affect, or be affected by Diabetes. This may aid individuals in imagining how Gender Age DOB their body reactsFto their test results. They58 also give a quick overview of all03/07/1956 results.

Medical Information Low Risk Kidney Blood

Blood Pressure

Kidney Urine

Cholesterol

Weight

Blood Sugar

Medium Risk

High Risk

Eyecare Checkup <12 Months

Footcare Checkup <12 Months

Smoking Passive Smoker

Want to talk about? Communicating

Lifestyle

Diet

XIII

Diabetes Test Result Patient Information

Final Design Medical Information

Name

Dr Graham Kramer Link Health Centre Montrose, DD10 8TY Phone: 01674 673400

Maisey Smith

Numbers can allow a target to be set. They provide a kind of goal to work towards. By highlighting if the current result was better Gender F 03/07/1956 than the last, individuals can knowAge if they58 are heading in the rightDOB direction.

Medical Information Low Risk

Medium Risk

High Risk

Blood Pressure

Blood Sugar

Kidney Blood

Improved Result: 128/78 Target: 120/70

Cholesterol Unimproved Result: 5.7 Target: 3.0 Eyecare Checkup >12 Months

Improved Result: 83 Target: 49

Weight Unimproved Result: 26.2 Target: 20.0 Footcare Checkup >12 Months

Improved Result: 88 Target: 90

Kidney Urine Improved Result: 3.5 Target: 1.5 Smoking Ex-Smoker

Want to talk about? XIV

Communicating

Lifestyle

Diet

Diabetes Test Result

Dr Graham Kramer Link Health Centre Montrose, DD10 8TY Phone: 01674 673400

Patient Information

Final Design Medical Information

Maisey Smith

Name

Line bars are a way of visualising more complex information. They give numbers a sense of scale and are complemented by the F can be adaptedAge 58previous results, to DOB useGender of units. Then to show provide 03/07/1956 a sense of if an individual result is improving.

Medical Information Low Risk

HbA1c

mmol/mol

ACR

5.3

mg/mmol

eGFR

mL/min/1.73m2

Medium Risk

High Risk

Diabetes Sugar Control 59

Kidney Function Urine 3.0

5.0

Kidney Blood Filtration 60

Eyecare Checkup >12 Months

Last Result

Current Result

120/78 Blood Pressure BP

mmHg

130/80

140/90

3.8 Cholesterol HDL ratio

4.0

5.0

24.2 Weight BMI kg/m2

Footcare Checkup <12 Months

25.0

30.0

Smoking Actively

Want to talk about? XV

Diabetes Test Result

Dr Graham Kramer Link Health Centre Montrose, DD10 8TY Phone: 01674 673400

Patient Information

Final Design Medical Information

Maisey Smith

Name

Graphs can provide a tremendous amount of information. They not only include detailed results, but represented over time. By Gender F graph risk overAge 58also be highlighted.DOB 03/07/1956 using a heatline on the time can They additionally can show links between several results. As one spikes, so many another or soon follow.

Medical Information Low Risk

Medium Risk

Diabetes Sugar Control

HbA1c

69 59

mmol/mol

1999

2004

2009

1.3

5.0 3.0

mg/mmol

1999

2004

2009

2014

Kidney Blood Filtration

eGFR

69 mL/min/1.73m

45 60

Blood Pressure

142/88 mmHg HDL

4.1 ratio BMI

27.7 kg/m 2

1999

2004

2009

Eyecare Checkup >12 Months

Want to talk about? XVI

2014

Kidney Function Urine

ACR

Current Result

High Risk

2014

140/90 130/80

1999

2004

2009

2014

2009

2014

2009

2014

Cholesterol 5.0 4.0

1999

2004

Weight 30.0 25.0

1999

Footcare Checkup >12 Months

2004

Smoking Ex-Smoker

Weigh t

are Footc

Medium Risk

K id

High Risk

ey B

loo d

Final Design Individual Experience

Kid

ki o Sm

newhatever y Urinethey need them to be. All icons are By using simple icons without text, individuals are permitted to turn them into presented as challenges or strengths, giving no bias to their meaning.

Want to talk about? Things I am good with

Things I am bad with

XVII

Result: 128/78 Target: 120/70

Cholesterol Unimproved

Final Design Result: 5.7 IndividualTarget: Experience 3.0

Result: 83 Target: 49

Weight Unimproved Result: 26.2 Target: 20.0

Result: 88 Target: 90

Kidney Urine Improved Result: 3.5 Target: 1.5

By identifying several important aspects of managing diabetes, the individual is encouraged to discuss Smoking their personal beliefs and Eyecare Checkup Footcare Checkup experiences surrounding each.

>12 Months

Ex-Smoker

Want to talk about? Communicating

Lifestyle

Diet

Moods

Exercise

Love Life

Iâ&#x20AC;&#x2122;d also want to discuss

XVIII

ACR

5.3

Kidney Function Urine

mg/mmol

eGFR

mL/min/1.73m2

3.0

5.0

Kidney Blood Filtration

Final Design Individual Experience

3.8 Cholesterol HDL ratio

4.0

5.0

24.2 Weight BMI kg/m2

25.0

30.0

Eyecare Checkup Goal can be set and and explaination can provide insight intoFootcare why they areCheckup important. Asking what theSmoking individual expects once theyâ&#x20AC;&#x2122;ve reached their >12 goal provides a clue to the vision the are<12 working towards. Months Months Actively

Want to talk about? Circle a Goal

I will change

Better Conversations

Change Exercise

I want this so I

Manage Moods

Adapt Lifestyle

I will do this by

Support Love Life

Improve Diet

I may stop for Iâ&#x20AC;&#x2122;d also want to discuss

XIX

February

August

Next Steps Project Diagram

Patient Achieving Goals

Doctor - Patient Communication

Not One Solution

Funding

Productive Consultancy

Recruiting More G.Ps

Other Long Term Conditions

Evidencing

Statistical Risk

Public Engagement

Horizon 2020

Test Results Interaction

SCI Diabetes

Research Grahamâ&#x20AC;&#x2122;s view of the future, Year of Care

Appointment Letter

Information Gathering

Care Planning

Appointment Letter

Data Inputting

Information Gathering

Data Inputting

Follow Up

Care Planning

Information Sharing

Outside the Consultancy Inside the Consultancy

XXI

Photography Project Collages - Experiencing the Situation

XXII

Photography Project Collages - Analysing the Situation

XXIII

Photography Project Collages - Research to Ideas

XXIV

Photography Project Collages - Preparing Ideas to Share

XXV

VISUAL TEST RESULTS