I invite readers to peruse the following 5 attachments at the end of this post, which provide additional information on InMyHands progress and the changes that have occurred during the refinement phase:
01 biz model and stakeholders: 2 pages
02 initiatives and influences: 2 pages
03 insights: 2 pages
04 user types: 1 page
05 user journeys: 3 pages
05 stakeholder and expert interviews: 2 pages
A business model canvas summarises the start-up vision, showing how InMyHands creates value for users and key healthcare partners, with iterations as I receive feedback and continue to refine the concept. A stakeholder map identifies the key people associated with the concept, their roles and the system of care that surrounds the individual - each stakeholder has an influence on the individual’s experience at different life and health stages. The model and map are contained in attachment 01 biz model and stakeholders.
Problem statement: The barriers to advanced care planning are high. It is a complex, unfamiliar and emotional process. Many individuals do not understand the forms or the consequences of their end-of-life preferences. It is not surprising that too few people create plans, and that those completed are poorly written. The result is that individuals lose control over end-of-life decisions; loved ones’ experience unnecessary stress and distress; and frontline medical staff struggle to interpret poorly expressed wishes. Not to mention the medical costs for unnecessary interventions borne by hospitals, aged care facilities and ultimately society.
Initiatives and influences: Information on the myriad government, medical and private websites is almost uniformly presented from a medical and/or quasi legal perspective. And the content dry and super factual. A few websites break this mould and are worthy of mention because they have helped me refine/confirm thoughts about InMyHands. They are https://www.farewill.com, https://www.myvalues.org.au and https://www.prepareforyourcare.org/page.
In thinking about how to personalize InMyHands for differing user needs, I’ve found inspiration in industries as diverse as health insurance, e-tax returns and photoshop elements editing software! What these have in common - and share with my vision for InMyHands - is that an initial choice by the user, based on their particular characteristics and needs, funnels them down a particular path, offering customized information and plans/programs to help them readily achieve their goals.
In attachment 02 initiatives and influences I explain why and how these websites and examples from other industries influenced my thinking.
Insights: I’m human and this is emotional --
Looking at end-of-life planning from a human-centred rather than government, organisational or medical point-of-view we discover ...
- end-of-life planning is intensely personal, yet websites adopt a one-size-fits all approach
- most individuals do not understand medical treatments and terminology, yet websites use this language and the end-of-life planning journey is unclear -- farewill and prepare are exceptions
- governments and hospitals want people to create end-of-life plans, yet people struggle understand the choices, the consequences of their choices or legal status of their wishes
- there’s wide-spread recognition that individuals are ill-qualified to make decisions about medical treatments and that end-of-life choices are better made through clarification of personal values and what are/are not acceptable outcomes, yet advanced care forms still ask people if they want CPR etc.
- more people are engaging in end-of-life conversation, yet uptake of end-of-life plans remains low
- end-of-life decision-making is treated as a dry and rational process, yet we know it is anything but
- family or doctors may have different views of end-of-life preferences than the individual and this clash in beliefs can cause significant distress
-- and it requires effort - from an individual’s perspective the cognitive and emotional effort required to become aware of, consider, create, update and ensure enactment of their end-of-life wishes is considerable.
Further details and a framework that captures this effort are available in attachment 03 insights.
Solution: advanced care planning solutions are typically large-scale and longer-term e.g. government and/or hospital-led awareness campaigns, systemic changes to government policy, medical training, medical awareness and legislative frameworks.
InMyHands is a more nimble solution that is designed to empower individuals. It guides users through the end-of-life planning journey from creation to the enactment of plans, and loops around between create and update to allow for changing experience, health situation and preferences over time. It allows the person to ‘start where they are’ with plans that take into account age. readiness and health status. It it lowers the barriers that prevent people getting started by making the creation and update of medical wishes easy to do, easy to understand, light in tone, and visually engaging. And the design is driven by the following ---
- help me get started easily and without having to understand medical terms
- start where I am now and let me build over time as I age and/or my health changes
- don’t make me do more than I need for my age stage and health status
- let me choose the type of plan I want to create - be it simple or complex
- give me more detailed information as my needs become more complex and my understanding increases
- reassure me that my plan is clear and comprehensive enough to be understood and enacted when needed
InMyHands tackles the problem of low uptake and poor quality plans with these key concepts:
- an easy-to-follow visual roadmap - what I need to do now and what next
- ‘someone like me’ - recommendations for plan type based on someone of similar age/health
- ‘mix and match’ - pre-prepared/standardised statements that can be selected and ‘dragged’ into a plan template to help users get started quickly and with minimal knowledge
- care companion ‘compatibility quiz’ - how comfortably your care companion can represent you and make decisions in line with your values
- creative expression of wishes through various media - words, a video or podcast with family and friends, a storyboard for different scenarios e.g. @ home, the hospital, an aged care facility or hospice
- IDEALLY a process that explains the potential consequences of an individual’s selected values and health conditions - investigation needed
- an electronic report that confirms plan preferences and robustness, with the flexibility to make changes before converting it to the preferred medium and sharing it with key healthcare partners
- use a process that is practical, simple and visually engaging
- create plans that can be as short and simple, or longer and more detailed
- can create plans at home alone, with family and/or friends
- from culturally and linguistically diverse populations are catered for
- have greater assurance that plan can be implemented as designed because of the care companion compatibility quiz and the use of pre-prepared statements that are easily interpreted
- game-like elements and pre-prepared mix-and-match information create a less formal and lighter-hearted take on a typically heavy topic
Frontline medical staff and aged care workers -
- interact with a higher percentage of individuals who have clear plans
- more easily interpret and enact plans that are contain easy-to-understand standardised wording
- experience reduced conflict among care companions and other loved ones
USERS AND THE USER EXPERIENCE
I used a matrix based on life stage and health status as a stepping stone to identify the following 4 types of representative users: Johnny who is young and healthy; Sasha also young but has experienced chronic childhood illness; Franklin, mature and healthy; and Millie, mature but with repeated chronic illness. How this matrix led to the 4 user types is explained in attachment 04 user types.
User experience map
To illustrate the user experience, and for the purpose of prototyping I’ve decided to focus on Johnny, who is young and healthy. See 05 user experience journey.
Johnny overcame his initial (and youthful!) hesitation about planning ahead and contemplating his own mortality because his best friend Sam suffered brain injuries in a motorbike accident and is being ‘kept alive’ by machines in a nursing home. Johnny dreads the thought of ‘living’ like Sam so he used InMyHands to get started quickly with a few ‘big bucket’ items for his plan (e.g. no life-support if no chance of recovery to current state of heath, and organ donation) which is all he is interested in right now. He knows he can ‘beef up’ his plan at any time with additional details, add a Medical Power of Attorney and even express his opinion on the controversial topic of assisted suicide. And he’s set up a 2 yearly notification to review his plan, unless his personal circumstances and or health change in the meantime.
REFINEMENT PHASE PROGRESS
So far I have interviewed and obtained feedback from the following 5 stakeholders and experts:
- an advanced care planning co-ordinator in community health
- physician and rheumatologist with palliative care experience
- project manager working on the integration of Shared Care Plans between GPs, Hospital, Community Health, Ambulance, private Allied Health professionals, My Health Record and Aged Care Facilities
- medical registrar in a hospital emergency department
- one young and healthy prospective user
And these were the key learnings:
- the medium used matters less than clear and comprehensive statements that make it easy for care companions and frontline medical staff to follow
- it's better to start small and simple than not at all; and an individual can create a useful plan even if it doesn't cover all medical scenario
- compatibility between the individual and their nominated ‘care companion’ is so important - the latter needs to be comfortable representing the person’s wishes, otherwise it's a barrier to enactment
- provide a summary report to users who’ve created their plan to let them review and subsequently change their registered preferences
- plan authority: plans do not require professional medical input; doctors take patient-initiated requests into account; the care companion does not need medical power of attorney, although it is more thorough if they do - although another source suggested plans required a digital signature, and for each plan update
- the ‘treatment pathway’: increasing government support for eHealth makes this a viable way to get end-of-life preferences into the hands of people on the treatment pathway
- improved plan quality: plans created from pre-prepared statements or selections from controlled drop down lists would standardise and improve the quality of information for individuals and medical staff
Attachment 05 stakeholder interviews describes in more detail the feedback from prospective users and experts.
Refinement phase pivots / changes
Target audience age range: in response to Community and expert feedback I extended the target audience age range from 35-65 to 30-70. I excluded those over 70 because they are often already the target of GP and aged care-initiated programs.
Outcomes vs. interventions: both research and prospective users say the likelihood of recovery is a critical factor in decision-making. Several prospective users said they are less concerned with interventions than outcome i.e. full/partial/no recovery. For example, an individual might say yes to artificial feeding if this is short-term 'bridge' to full recovery. They might say to the treatment if it has to be on-going because they are not expected to recover. This is a great new idea I'll use for framing plan decisions and content.
Translation of personal choices into what that means from a medical point-of-view: at idea submission phase I envisaged that InMyHands might enable individuals to express their end-of-life wishes, then ‘translate’ those wishes into what that means from a medical point-of-view. Prospective users expressed interest in knowing how this might work.
What I’ve learnt during the refinement phase is that how to achieve this 'translation' is a rather wicked problem that needs further investigation.
- some expert feedback suggested it feasible
- other expert feedback suggested a better starting point for making the connection might be the individual’s medical condition e.g. the user selects from a list of ~ 8 conditions (based on dementia and the major body systems e.g. heart, lungs, cancer, blood etc.) and their selection then provides them with tips on things to consider for inclusion in their plan
- algorithms that enable such a 'translation' work better with ‘controlled language’ or standard/pre-prepared language than with the variable, free-form responses that currently appear on plans
- Is eHealth sufficiently embedded in healthcare, and used by key partners -- GPs, Specialists, and frontline medical staff -- to be the ‘distribution channel’ of choice for the various media used to create an InMyHands plan?
- What is the most practical and useful way to explain the connection between value statements individuals choose and the consequence of these choices in terms of outcomes?