The future of healthcare: Carving out a new system from a broken one

Our current interactions and relationships with healthcare services rely on a deep sense of trust, but they might not be as trustworthy as they should be. The reasons vary wildly, but at Designit we’ve been ruminating on the systemic issues that are undercutting healthcare. In other words, the problems that are layered in the invisible, behind-the-scenes machinations that break down the care and trust between patient and practitioner.

By María Ana Barrera

This idea of invisibility has gained traction because of the digital era. You may not understand exactly what happens when you hit “pay” in an app on your phone, but you receive a text message from your bank letting you know Uber Eats (or any food delivery app) charged $25.00 to your credit card, and 35 minutes later there’s a delivery person ringing your doorbell with your veggie poke, just in time for lunch. Without understanding how it all happens, this is a fairly common action we do every day without hesitation.

Trusting invisibility

All in all, trusting invisibility goes beyond digital processes. It relates to trusting what you cannot see or understand. I don’t need to know exactly how the back end of my bank, my phone, the restaurant, and Uber Eats are all connected. As long as the food arrives at my door on time and the amount shown is charged to my account, I’m good. Most of us don’t even check when companies like Amazon or Apple charge us because we know (or at least we think we know) that they wouldn’t mess that up. We trust them.

I recently watched technology researcher and author Rachel Botsman speak about the currency of trust. She touches on some great points. For example, how most conversations about trust revolve around the idea of transparency which, she says, is not always the answer (not that transparency is a bad thing; it just isn’t the magical fix when there’s a lack of trust). She also talks about how trust depends on the context, and most of all, on integrity and the alignment of actions and intentions. When I heard this, I was blown away and haven’t stopped thinking about it. Wherever I go and whatever I do, I’m constantly considering my interactions with services and people; whether there’s trust or why there isn’t; and how this defines my relationship with everything around me.

Eyes wide open

In this weird personal experiment, I found myself helping my mom navigate the healthcare system. As daughter, caregiver, patient advocate and, as you can imagine, researcher, I’ve spent countless days understanding the reasons why it’s too hard to trust invisibility in healthcare, and how, surprisingly, many people haven’t lost faith in it. How is this even possible? Do patients blindly believe providers know best and unquestionably trust them?

While in the hospital I stopped and looked around. I saw how patients heard what providers told them, and observed that most didn’t ask any questions. They probably had a list of things they could ask, given the immense gap between how much providers know and how little we do. Beyond that, there’s a huge issue in that the time spent with doctors is minimal, and understanding the complex language of medicine is not quick and easy (especially when you also need to process emotionally-intense information). Thanks to previous research, I’m very aware that patients don’t always understand what providers say, and still, they don’t ask questions. On the other hand, patients are not completely honest with their providers, either because they feel ashamed, or because they don’t offer up information that’s not asked of them. I once heard Lorna Ross, Group Director at Fjord, say “patients don’t know what they don’t know” (tricky, but deep). Patients don’t know which information is important to share.

The relationship between patients and doctors goes a long way back. Doctors have been wizards, scientists, and saviors. They study hard to become experts, and they constantly train to address new conditions or understand new technologies, processes, and medications. I truly believe medical careers are tough and require tenacity, drive, and a thirst to be the best. After all, providers are in the business of saving lives. And as guardians of our health, they can be seen by patients as reliable figures who know it all. So, only a few patients question their medical team’s decisions (please don’t get me wrong, I’m not advising to question medical judgment). I’m honestly amazed that our relationships with providers, although not truly founded on honest and reliable information, are still fundamentally trustworthy.

Then again, we — common people with scarce knowledge about medicine — can only trust what well-trained medical practitioners recommend. Knowing all they know, undeniably they are more capable of making informed decisions than we are. On our end, we blindly trust what they say, because we don’t fully comprehend it all. (How can we? We’re not the doctors!)

Navigating the waters of communication

Doctors are not the only players who interact with patients in the healthcare system. Sometimes, contradictions between players and their own interests distort the idea of trust. Here’s a case study: Last year, while doing research for a health insurance company in Latin America, I was surprised to learn that pregnant women struggle with deciding whose advice to follow: Is the insurance company’s recommendation to embark on natural childbirth the best birth plan? Or should they listen to their doctor and have a C-section? Torn between the two options they’re forced to navigate this truth: Insurance companies may tell women that doctors prefer to schedule C-sections so they can have an organized schedule and charge higher fees. But doctors may tell women that it’s the insurance companies that are the problem, and recommend natural childbirth because it’s cheaper. In the end, women can’t help but wonder who has their best interests in mind (it’s the lucky person indeed who has a brother, a sister-in-law, or a next-door neighbor in the medical field).

During my research, I noticed that we tend to think medical decisions are based on our best interests. But we don’t grasp the idea of what our best interests are in the first place, because we don’t tend to ruminate on them or work them out in detailed conversations with our medical practitioners. This creates a terrible cycle. So, the moment a woman is presented with a scenario in which she has a high probability of developing breast cancer, her doctors might suggest it’s best to do a prophylactic mastectomy. Or, when she’s been in an awful car accident, the doctors might take extreme measures to revive her. But what if that preventive surgery ends up with the body rejecting the breast implants? Or, what if those extreme measures leave her unable to breathe on her own?

I know there are a million “what if” scenarios when it comes to health decisions. And that’s one of the reasons why reflecting on what our best interests are is so important. Especially, considering that they might change in different circumstances. A married woman with no children who’s diagnosed with a terminal condition could decide to spend her last days enjoying life to the fullest, whereas if there are children in this picture, she could decide to undergo an experimental treatment that could theoretically give her more time to raise her son and see him graduate, even if it means enduring pain and suffering. Knowing how the time we spend with our providers discussing our medical situations is practically zero, how can they understand what our best interests are, and make decisions based on that? Usually, we only discuss these when there’s a matter of life or death. But there are so many more situations in which we need to consider them. (In case you are thinking I’m placing blame on doctors, I’m not. I’m blaming us — the patients — and the healthcare system metrics that track efficiency and not care.)

Can trust in healthcare last much longer?

I believe relationships between patients and providers (and hopefully health insurance companies) are destined to change. Every now and then you hear someone asking if a medication will make him gain weight, or if a specific type of food could be the reason for his allergies. Usually, those issues are discussed among friends and families, or blogs or support groups. People are resourceful, after all. I’m pretty sure word-of-mouth is still the best publicity for informal advice. Doing research with patients and caregivers, we’ve learned that women whose children suffer from chronic conditions tend to group and help each other, just like pregnant women tend to talk with one another and share their experiences. You’ve probably seen this everywhere, given that we are social beings. This anecdotal information could benefit patients so much, but it’s not typically shared in the medical space where it could make an impact.

Healthcare by the clock

Moreover, healthcare has become an industry measured by targets, KPIs, and systems and processes driven by efficiency, all designed to be economically viable. Through this process of commercialization, we have all lost sight of what’s most important: our care. Doctors go from appointment to appointment trying to reach quotas (like number of patients seen per day); nurses and healthcare team members spend the bulk of their time doing paperwork that allows tracking, billing, etc.; patients don’t inform doctors of everything they need to know because appointments are cut short; health insurance companies are designed to react when there’s a crisis, but they’re not in the business of trying to keep people healthy. This is an equation that is not sustainable.

Going back to Rachel Bostman, there are four major components to her trust formula. Let’s see how they might look as seen through a patient’s eyes:

(Feel free to interchange the subject or pronouns of your preference: he / she / provider / doctor / healthcare team / clinic / insurance agent or company / practitioner / nurse…)

• Competence → Does this doctor have the skills and experience to go through with what she promised?
• Reliability → Do I feel I can depend on this healthcare team? Are they consistent? Do they show up when I need them?
• Empathy → Do I feel this insurance agent cares about me and understands what I’m going through?
• Integrity → Are the actions of this clinic aligned with their words and values? Are their intentions aligned with mine?

While there may be some positive responses to the above questions, that won’t always be the case. Here’s my take:

Most systems are broken, but people are not. So, whenever the system fails us, we should be able to at least count on people. What does this mean for me? As a patient, I try to be nice to the lady at the front desk of the hospital admissions. It all comes down to common sense: If I acknowledge the immense burden she has doing her job, chances are, she will do her best to help me. Although I wish it were different, I don’t always trust that hospitals have my best interest in mind since they tend to see the money signs in “bed count” — but she might.

A little piece of advice I received from a mother /caregiver while doing research: Always be nice to nurses. They can make things happen. Be on their good side. This applies to anyone who’s on the service end of the healthcare system. Even when it’s hard, I smile at the health insurance agent. I don’t call him names, or hang up the phone, or yell (I do my best never to do that, even if a call center causes me to lose my temper). Realizing he has a difficult job, and I can make it less difficult by offering him respect and treating him like a human being. This can have wonderful results. When I show empathy, I might get it back. When I’m lucky, I know I can trust that this person might go above and beyond to help me.

You are your own best advocate

The hardest part is trying to be completely honest with my healthcare team. It took me a while to learn this: I am the one holding all the information about what’s going on with my body, and I am my only fully-invested advocate. So, I try to explain everything with examples and details and I try to keep track of the issues that are bothering me. Telling your doctor that your wrist hurts is very different than explaining to her that the pain started at night and worsens when you sleep (not while you are writing an article on your computer). In the end, I try to promote these meaningful conversations so we can make decisions together.

And when it comes to healthcare providers, whenever I get the chance, I try to remind them that patients don’t know what they don’t know. Keeping in mind the knowledge gap is not always easy, so a reminder is always useful. I’m very aware of the emotional burden that providers face while dealing with metrics, quotas, and back-end tasks, and I have seen how some providers face dilemmas that might compromise their judgment or ethics. Although prioritizing their ethics might be difficult, they’ll sleep better at night doing so.

Designing the future

For my part, I believe that every healthcare organization has good allies who you haven’t met yet: service designers. We’re in a unique position to examine broken systems and ideate new ways to improve upon them, and have already had some great success (check out Designit’s project in Oslo that reduced the wait time of breast cancer diagnostics by 90%). If your healthcare organization could use a systematic change that would put communication back into the patient/practitioner equation, service designers are a valuable asset. Healthcare is changing, so try to keep up.