Purpose

The Futures of Unwellness project explores how our understanding of health, wellness, and disease may shift over the next 5-10 years. It brings to life two Futures Patient Journeys. These journeys are presented as short stories that illustrate how a person’s illness experience may shift in the future, exploring the different emotions, actors, touchpoints, and unmet needs they might face when navigating illness. In doing so, it asks us to reflect on the possible opportunities in planning for and building around the futures of illness experiences—rather than assuming our current paradigm of illness and wellness will remain stable.

How might we begin to design for the future patient journey now?

Process

At Fresh Squeezed Ideas, we practice strategic Anthro-Futures: an exploration of emerging futures at the intersection of socio-cultural, technological, and behavioral shifts. The Anthro-futures practice is led by a multidisciplinary team of social scientists and foresight* practitioners, and is comprised of four key steps:

Mapping the current cultural landscape

through social science literature and ethnographic insight. This includes a review of over 100 patient journeys developed for diverse clients, which has helped us uncover a universal current state patient journey.

Uncovering signals of change.

We have found that beliefs, behaviors, and technologies are changing in healthcare, and beyond.

Identifying trends

by connecting seemingly unrelated signals of change. We map these trends in relation to each other and across time, noting connection points and overlaps as well as divergences to create possible, probable, and preferred future scenarios.

Envisioning alternative future patient journeys*

grounded within these future scenarios. In this project, we have brought to life two very different futures journeys: a desired future journey in which healthcare organizations design and plan for Unwellness, and an alternative journey in which Unwellness experiences remain largely unaddressed.

Payoff

The patient experience and journey is changing, and new needs, emotions, touchpoints, and actors are emerging. The Futures of Unwellness project gives you the opportunity to align your business with the hopes, dreams, and desires of your future patient, instead of remaining part of the status quo. In other words, it’s a path to creating meaningful change and becoming a leader in the industry—and a chance to make a lasting impact at a very human level.

*Foresight is a research-driven practice of exploring expected and alternative futures and using these futures to inform strategy. In a business context, foresight is used to make organizations more resilient to change, to innovate effectively, and to increase differentiation early on.

*Futures patient journey moves beyond the current state to explore a day in the life of a future patient experience. These journeys bring to life possible and desired future experiences grounded in the hopes and desires of people we've met throughout our research, and in doing so, allows organizations to situate their business in the needs of a future patient.

What is Unwellness?

Unwellness: An in-between state, one in which you are not quite “sick” nor “healthy” or “well.”

:: The grey area between Wellness and sickness.

:: A feeling of pervasive unease.

We are living in a time of Unwellness. Wellness is failing us, and we’re realizing how futile it is to strive for an optimally functioning body and mind.

Instead, we’re increasingly living with a pervasive feeling of unease or Unwellness, driven by three key factors:

A constant stream of data about our bodies is making the risk of sickness more visible to us and creating feelings of pervasive unease (rather than Wellness)

Data on genetic markers and disease risk is creating a new type of patient experience: the patient-in-waiting or pre-patient with an early diagnosis and little-to-no symptoms

A growing number of conditions and health experiences are resisting diagnosis. People feel unwell but do not identify with the experience of being sick. Rather than identifying as a patient or caregiver, people are seeing themselves as living with experiences of Unwellness or caring for those who are Unwell.

Instead of relating to a clear patient journey with set stages, people treat their Unwellness with a DIY spirit of experimentation and iteration. More people than ever are feeling excluded from mainstream wellness narratives as well, which place the burden of responsibility for “living well” on the individual.

Strategic Disruptions

Think About It

Shift 1

Shifting Roles and Actors

From set roles to overlapping experiences

Current Paradigm

Today, the dominant thinking in the industry is that a patient is a patient and a caregiver a caregiver. This means that communications and solutions either target caregivers or patients. Yet, this is increasingly not the case: With the rise of chronic disease, most of us will be living with multiple conditions while caring for those around us. In other words, we will be both patients of something and caregivers to someone.

Anthro-Futures Provocation

What if we were to think of people as being simultaneously patients and caregivers? In the Futures Patient Journey, our protagonist Zahra is living with a condition while caring for her mother and aunts. Her needs, experiences, desires, and touchpoints span across the traditional roles of patient and caregiver.

In 2030, 83 million people in the US will have three or more chronic health conditions. (Masterson 2017)

Futures Opportunities

As patient and caregiver roles collapse, people will gravitate toward solutions that meet these dual roles. The focus needs to shift to designing solutions, communications, and services that address people’s dual roles, and their need to simultaneously care for themselves and for others.

Shift 2

Shifting Roles and Actors

From adherent patients to active curators of different modalities of treatment

Current Paradigm

We often assume that patients begin their journey in a space of denial; they simply aren’t accepting the severity or importance of their condition, or the fact that they are a patient. Within this vein, pharmaceuticals are seen as the core treatment modality, and anything else (e.g., herbal medicine, environmental cleanses) are seen as secondary or even unimportant. Yet, with the rise of Unwellness experiences, we see people resisting being categorized as patients or having a disease. This is because the paradigm of disease and patienthood fails to represent how people feel. In this space, pharmaceuticals are seen by patients as only one intervention among many that they may experiment with.

Anthro-Futures Provocation

What if people increasingly experience sickness, but don't ascribe to the idea of having a disease or being a patient of something? In the Futures Patient Journey, Zahra experiences depressive moods but does not see herself as having an illness or being a patient. Instead, she sees her low moods as a direct outcome of the world around her. Communications, solutions, and interactions that require her to “accept” her “disease” or identify as a patient alienate her. Instead, she moves towards interactions with health systems that recognize what she views as the “root causes” of her low moods, within which pharmaceuticals are administered alongside social and environmental interventions (such as community meals and nature walks).

In 2020, Americans’ out of pocket expenditures for complementary and alternative medicine [interventions that are not biomedical nor pharmaceutical] exceeded $30 billion dollars. (Donnelly 2020)

Futures Opportunities

As people increasingly experiment with different treatment modalities and reframe pharmaceuticals as only one of many ways of treating an ailment, they will seek out solutions that support them in this experimentation process. This requires designing solutions, communications, and services that account for people who don’t identify as having a disease or being a patient. It means designing for people who are using pharmaceuticals alongside, and interacting with, different forms of social, environmental, and emotional interventions.

Shift 3

Shifting Patient Journeys

From set stages to ongoing renegotiation of illness

Current Paradigm

We often assume that a person’s illness experience follows a discrete clinical pathway: first symptoms, diagnosis, treatment (first line and subsequent lines), and ongoing management. Yet, with the rise of Unwellness experiences—due to the constant stream of data about our bodies, as well as the growing number of conditions and health experiences that resist diagnosis—these stages are becoming less and less reflective of people’s experiences.

Anthro-Futures Provocation

What if set clinical stages in a patient journey are no longer the norm? In the futures patient journey, Zahra doesn’t experience discrete clinical steps, but instead moves through an ongoing process of making sense of her experience:

First signs of illness are no longer discrete events or moments.

Diagnosis is no longer a discrete moment, but a process of making sense of diverse data points.

As Zahra receives a constant stream of data about her body, the moment of diagnosis is no longer a pivotal moment of meaning.i Instead, her focus is on navigating what these different forms of data mean on a daily basis. The idea that she either denies or accepts her disease no longer holds up.

Treatment decision making is no longer a moment, but an ongoing process of renegotiation.

In Unwellness, Zahra experiments with different interventions, adopting a trial-and-error approach. She pairs these with other types of interventions, and evaluates the efficacy of pharmaceuticals based on their ability to pair well with other types of interventions (rather than the other way around).

Management of a condition is ever present.

Zahra lives with multiple unwellness experiences at the same time.

In 2020, Americans’ out of pocket expenditures for complementary and alternative medicine [interventions that are not biomedical nor pharmaceutical] exceeded $30 billion dollars. (Donnelly 2020)

Futures Opportunities

As defining moments in the patient journey shift, new actors will emerge. Consider a patient journey that is not based on a set clinical pathway, but instead centers around new phases, moments of meaning, and unmet needs.

Two Future

Patient Journeys

Possible vs. Preferable Future

With the rise of Unwellness, new needs and desires have started to emerge. Organizations can either respond to these new values or continue to offer services and products within the current paradigm. Below, we bring to life two journeys taking place 10 years into the future: The first explores how people may feel if organizations fail to respond to these shifts around Unwellness; the latter presents a future in which organizations and systems have pivoted to address Unwellness experiences.

In the first journey, we meet our protagonist, Zahra. Her world is one in which many elements of our present-day system continue on their current trajectory. Unwellness experiences remain largely unaddressed and Zahra often feels alienated from the systems of care around her. She ultimately finds meaning and hope in communities outside of the formal healthcare system instead.

In the second journey, Zahra's world is one in which our systems have shifted to support her needs and desires within Unwellness experiences. The healthcare system, and our approach to data and technology, has been transformed, and Unwellness experiences are at the heart of new models of care and wellbeing.

We want you to ask how you and your organization might respond to these changing values today. How might you begin responding to shifts in the patient journey now, to become more resilient later?

Considerations When Reading the Futures Patient Journeys

When reading the future journeys below, your immediate reactions may fall along the lines of:

This doesn’t relate to my target consumer

The Future Journeys below bring to life ways in which your target consumer may change (just look at how much expectations and needs have changed among patients, caregivers, and HCPs in the past 10 years). There are numerous ways that these learnings may apply to molecules or assets that are currently in Phase 1 and won’t come to market until 6-8 years from now. Consider how you might begin to plan for your future consumers’ needs, values, and desires (rather than assume that current needs and desires will remain stable).

This feels too unrealistic

Think about how much has changed over the past 10 years. It was only a decade ago that computers stopped including floppy drives. How we store and share data has radically changed. In 2008, the App Store was launched; in less than 15 years, a new world of digital products and experiences emerged, allowing almost anyone to solve anything with an app. These shifts were hard to envision before. Consider how the Future Journeys below may point to emerging futures that you haven’t planned for yet.

This future world makes me uncomfortable

The Future Journeys are designed to be provocations—scenarios that push our thinking beyond the current state paradigm. Feeling discomfort is a productive aspect of foresight thinking: it prompts us to reflect on how we might start to build a future that mitigates and addresses these discomforts. Consider how exploring uncomfortable and aspirational futures can help us identify paths toward a desired future—one that is desirable for both your organization and the people you serve.

These two scenarios feel like polar opposites

The Future Journeys bring to life two future scenarios that are envisioned at the extremes. Most likely, both of these journeys may coexist in the future. In exploring these extremes we invite you to consider possible middle paths, as well as your role in this hybrid world.

Zahra

I’ve been feeling very low lately. But with the state of the climate, the country, and my community, wouldn't anyone feel this way?”

I spend most of my time at work or caring for my mother and my aunts, who need quite a bit of support.

I need support in caring for my family, and to manage my own low moods that come and go.

I hope to receive care that considers my whole experience, my community, and the world around me.

Being healthy is about more than just health in my body; it is mental, emotional, communal, and spiritual.

Treatment goes far beyond the pharmaceuticals my mother used to take. I want solutions that integrate into my lifestyle and give me the freedom to experiment with different types of “treatments.”

Patient Journey 1

Current Paradigm Continuation

Patient Journey 2

SHIFT in Paradigm

Ongoing Monitoring

Current Paradigm Continuation

I’ve been feeling very low lately. But with the state of the climate, the country, and my community, wouldn't anyone feel this way? My Personi-Care portal doesn't seem to reflect any of this—it just keeps pushing ads for medication and sending reminders that my "risk" of heart disease is increasing. This makes me all the more anxious, so I do what any sane person would: I try to ignore it.

Shift in Paradigm

I've been feeling very low lately. But I'm not alone: Data from my community healthcare portal shows that others have been feeling this way too, especially since the news of a new disease strain affecting our neighborhood. Consenting to share my data with the community portal means that I have a better idea of what’s happening, while also contributing to our community care fund.

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I wake up to a vibration from my Personi-Care portal. I didn't sleep well last night; I tossed and turned to half-baked dreams about my apartment building crumbling and losing my mother in a shopping mall. But when your entire world feels like it’s on fire, who wouldn’t feel this low? Needless to say, getting ready for work is the last thing I want to do right now.

I head downstairs to the kitchen and see that the Personi-Care portal has synced with my fridge. This device monitors my daily data through wearables, and I have a simple bracelet that looks like a thick rubber band. This morning, it’s reminding me—via a screen on my fridge door, no less—that my recent low moods are causing my risk of heart disease to sky-rocket. I guess no bacon with my eggs this morning. Still, I tap "ignore."

Right on cue, my coffee maker pauses its reading of the morning headlines for an ad about a new depression drug: "Feeling sad? Hopeless? You might be experiencing symptoms of depression. Depression is a serious illness that affects millions of people every year. But help is on the way! New treatments can directly target the neural circuits involved in depression, getting at the root cause of your disease."

I roll my eyes. I don't have a disease. I'm just depressed because there's a lot to be worried about. Taking meds won’t make the ice caps stop melting or erase the fact that a kid was shot outside the local grocery store again. And besides, I don't have time to be sick. I have my mom and aunts depending on me.

The portal lets me sleep in a little longer this morning. I must not have slept well last night—the unpleasant dreams would certainly indicate that—so my meetings have been auto-rescheduled to give me a slower start.

I head downstairs to the kitchen and see the Communi-Care portal has a message for me. This device is our community’s healthcare portal, which aggregates data from the entire neighborhood. Today, it’s indicating that I'm not the only one who hasn't been sleeping well lately. The recent heat waves seem to be a big community stressor, and news of a new disease strain affecting nearby neighborhoods hasn't been helping either. No wonder people have been so distracted and disengaged in our local meetups.

My coffee maker has opted for jazz this morning instead of the news, and I'm thankful for that. During a pause in the music, it asks if I want to contribute how I'm feeling to the community portal. Now that I've had my coffee and listened to some music, things seem a little brighter. I accept. Allowing the portal to download my anonymized data means I'll receive payments for our community care fund too—last year, we were able to afford preventative mental health services for anyone who needed it.

The portal begins discussing some recent community data findings. Feelings of sadness and disconnectedness are on the rise. I describe my own feelings and some of the factors that I believe are contributing. I watch the screen as my insights are added to the Communi-Care database, seeing my own concerns match with the words of my neighbors and friends. As I read about other people’s experiences, I notice many things that must have been affecting my mood without realizing it.

I accept the portal notification recommending that I turn off my risk tracer notifications for the week to help increase my mood. When I'm feeling low like this, constant reminders of my health risks can be overwhelming. Usually I like knowing that someone—or in this case, something—has my back, but it’s good to take a break sometimes.

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Reaching Out for Support

Current Paradigm Continuation

Information online is overwhelming and no one is really talking about the things that make me feel low—in other words, the entire world around me! And although some of the suggested “lifestyle” changes (like spending more time outdoors) feel good, most are too expensive or time-intensive. It’s not supposed to be my full-time job to get better.

Shift in Paradigm

A virtual community meeting helps a lot, where a public health specialist, an environmental advocate, and an unwellness coach lead a discussion on the root causes of low moods in communities. I feel a lot more hopeful after connecting with everyone.

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A week goes by, and the depression ads and warnings finally get to me, so I research my symptoms online. There are so many virtual communities for people with depression, it's overwhelming.Yet no one is talking about the things that make me feel low.

Finally, I find a post from someone who had seen a naturopath, and it helped them feel better. Although the naturopath is well out of my budget, the person shared the care plan the naturopath had made for them in their post. Although the meal plan is impossible to afford or find the time to make, I enjoy reading about the importance of sleep and spending time outdoors.

For the first few weeks, I feel a little better as I try these suggestions. I make more time to walk outside, I eat my lunches in the park, I try really hard to get to bed earlier, and I spend more money than I should on food. But somehow, the Personi-Care portal data doesn’t change—my risk for heart disease remains the same. Why isn’t there a place to input that I’m feeling better? Doesn’t that count for something?

A week goes by, and the lows in my community are not tracking any better. This month's community concierge calls a meeting, and I join from my living room. They've brought together quite a panel of resources. There's an environmental advocate to discuss our concerns about the heat waves and liaise with the city council, and a public health specialist available to discuss the nearby disease outbreak.

There’s also a new panelist I haven't heard of before: an unwellness coach. They apparently specialize in helping communities identify root causes that manifest as feelings of unease in our bodies. This coach is being funded by the community care fund, so anyone who's been feeling down can meet with them for free. They seem to really understand the complexity of what we're going through. I sign up on the spot.

I feel a lot more hopeful after my appointment with the unwellness coach. They asked me about what’s been going on in my life and cross-referenced it with community data. We even explored possible environmental causes for my low moods, which they explained are deeply intertwined. They mentioned that, as a first step, I should continue going on my nature walks and shared some breathing exercises I could do while outdoors. They gave me some information about depression and said they would be checking in on me in a week or so to see how I was doing.

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Receiving Care

Current Paradigm Continuation

After my mother passes away, things get even worse. I start receiving warnings that if I don’t talk to a doctor, my insurance costs could go up, so I begrudgingly book an appointment. The TeleDoc doesn’t seem too interested about my mother passing away, or the fact that being outdoors has helped. Instead, she tells me that my depression could easily be treated with medication that I will probably have to take for several years.

Shift in Paradigm

My mother passes away. My unwellness coach is the first person who stops by with a meal and a listening ear. They recommend that I meet with the care team at the local library, where I’m able to share my concerns and hear from other community members about how they have been feeling too. The doctor, who is part of the team, sets me up with three different medications to trial over the next few weeks, paired with herbal medicine and an air purifier on loan.

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A few weeks later, my mother passes away. Now I’m the only one taking care of my aunts. And to make matters worse, a mini epidemic has broken out in my neighborhood for the third time in two years. It isn’t safe to go outside anymore, so no more walks for me. And I can’t afford to keep eating that organic food when there’s a funeral to pay for.

I start feeling really low again. And to add to my stress, the Personi-Care portal starts warning me that if I don’t talk to a doctor about my "risk," it could increase my rent and insurance prices. So I decide it’s time to bite the bullet and book an appointment via the portal. I have to wait two weeks for an appointment with the TeleDoc—a long time if I’m really so at risk, if you ask me.

When my TeleDoc appears for our first appointment, I know she could see all of my data. She doesn’t bring up the epidemic though. I tell her about my mother passing away, but she doesn’t seem to care. She does say that, based on data from my wearable bracelet, my depression wasn't that bad and could easily be treated with medication. How can my depression not be “that bad” if I feel this way? I tell her how much it's helped to be outdoors recently; she says that she's happy for me while glancing at her watch. I’m rather unimpressed.

"You have to accept that this is something you are going to live with your whole life now,” she continues. “You have an imbalance in your brain chemistry and need medication for it. And your genetic risk for heart disease means that you need heart medication as well. The data shows that if you don't act now, your risk will increase threefold over the next year.”

Just when things start to improve, my mother passes away. Now there is only me left to take care of my aunts. On top of that, a small epidemic has broken out in my community for the third time in two years. It isn't safe to go outside anymore, and I’m feeling so low that I can barely make it to the nearby community space to get meals or recharge.

Although we only met one time, my unwellness coach is the first to stop by my house after seeing the recent dips in my mood data. They bring my favorite meal and let me talk everything out. Even if it’s technically not their job, it’s nice to know there is someone who cares enough to check on me.

My unwellness coach books me in for a session with a holistic team at our local library. I remember a time in the not-so-distant past when libraries were only for books. Now, I can't imagine living in a community without a well-stocked lending and sharing system. Short on kitchen essentials? No problem. Your home office chair is hurting your back? There might be a better fit waiting for you here. It really cuts down on the clutter.

I'm bringing a friend along to my session, since she has dealt with low periods before. She has been taking pharmaceuticals, along with trying some medicinal practices from her ancestors, and has been in a much better place. It’s nice to have input from her experiences.

I feel so heard at the care team session. Some people even cry! We talk about what's been happening in the community and how it felt to lose my mom. The team and my friend share their experiences with similar losses, how the recent news in the community has been affecting them, and how they have felt during low periods. It’s very validating and interesting to hear how differently we all experience similar situations. I feel a lot less alone.

After the group care session, I meet with a librarian who's been given a list by the care team of things I should try with their support. The doctor on the team has set me up with three different medication options. I pick the first one based on the side effects and effectiveness matching with my genetic data, community data, and cultural profile. I take home a few days' worth, knowing I can come back to chat with the librarian about how it’s working. Other members of the care team, like the spiritual guide and the botanist, also suggested I loan out an air purifier and some herbal medicine. The librarian adds this to my check-out bag.

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Experimenting with Treatment

Current Paradigm Continuation

I take my meds for some time, but I stop eventually. Most days, I don’t really feel a difference anyway. Sometimes I skip a few days or I share them with a friend who was also feeling low. My doctor scolds me when I tell her about that. They have no understanding of what living with this is like.

Shift in Paradigm

I’m discouraged when the first medication sample doesn’t help much. I’m hesitant to try another, but my care team's support puts me at ease. They also advise that I pair the medication with some supplements. I share my data in the Communi-Care portal, hoping that other people in the community can get better recommendations moving forward.

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The next day, two small bottles of pills are delivered with my grocery order. The tag reads: "Patient No. 1426; Prescribed for: Depression and Pre Heart Disease."

How could they leave something so personal out in the open, lumped in with my groceries? And what if I had questions—was I supposed to reach out to a stranger on some virtual hotline and explain myself all over again?

I do take the meds for a little while though, and I admittedly start to feel better. But honestly, it's hard to say whether it’s the meds or just the normal passing of time. So one day, when I feel like I can breathe again, I stop taking them as regularly. On days when one of my friends is feeling particularly low or unmotivated, I give them some of the meds to get them through the day.

In my follow-up TeleDoc appointment, I mention that I sometimes share the pills with my friend, and that I take the medication on and off. The doctor tells me I should stop immediately. It makes no sense: If these pills help my friend and I'm not using them, why should I just let them sit on a shelf? On the other hand, I know that the Personi-Care platform is tracking my wearable activity and med deliveries now, and if I don't get a refill of my prescription soon, the warnings about insurance costs might return.

When I get home, there is a “Living with Unwellness” toolkit in my mailbox. Inside is a voucher for several day passes and transportation to a local conservation area (with appropriate safety measures for the epidemic), a list of community members who have invited me to join them for meals next week, and a schedule with friends who have signed up to help me care for my aunts for the rest of the month. There are flowers on my kitchen table too, yellow lilies—my favorite.

The next few months pass in a blur. The first medication sample I get from the library doesn’t seem to do much for my low mood, and my only highlights are the days when friends take me to the local conservation area. I let one of my friends try the meds when they’re having a bad day, and it seems to do wonders for them. I’m a bit hesitant to try a second medication, but a home visit from the librarian and a teleconference with my care team makes me feel like it’s worth a shot, especially if I pair it with a supplement regime the community nutritionist has developed. After a few months, I really do feel lighter. I write about my experiences in the Communi-Care portal in the hopes that the next person looking for medication options will find a better match.

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Communities of Care

Current Paradigm Continuation

I had all but given up until I read about an unwellness lobby group. There, I learn about a data tracking blocker for my devices—no more incessant notifications about risk and disease! Without the constant reminders, I’m finally starting to feel better about the future.

Shift in Paradigm

The portal matched me with a new community member who has been dealing with similar struggles. I can’t wait to provide her with the same support I received, so I send her an invite to visit the conservation area.

Read full stories

Eventually, I run into an old acquaintance at the grocery store and we catch up over coffee. She tells me about an "unwellness coach" she’s been seeing, a trained professional who specializes in caring for conditions like mine—especially when doctors aren’t helpful. I wish I had known that was an option, or been able to afford it. Imagine! Someone who actually looks at me like a whole person, not just numbers and a chart.

She also introduces me to an unwellness lobby group, made of people like me who feel that their care options don't reflect their experiences. After my first meeting with them, I download a data tracking blocker for my devices. Now I don't have to see all of the scary risk pop-ups or have my insurance notified if I eat a strip of bacon. It might seem counterintuitive, but I’m finally feeling a bit more optimistic about the future.

A few days ago, the portal notified me that I had been matched with a new member in our community. Our data reflects that she has been struggling with similar experiences lately, including the passing of her father while caring for her mother, and would benefit from connecting with someone.

I’m looking forward to sharing my experiences with her and letting her know that she can trust the community to take care of things when it matters most. Maybe I’ll even refer her to my unwellness coach. I send her an invite to visit the conservation area.

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