Design research findings
Learning from complex patients and the providers who treat them
On and off for the past seven years I have been working on a way for patients and doctors to communicate more visually — so that patients can better illustrate their experience to their care team. I’m calling this Pictal Health, and I’m currently exploring digital and analog means of supporting visual health storytelling.
As part of this work I’ve interviewed many different patients, caregivers, nurses, and doctors. For patients and caregivers, I wanted to know how they communicate with their care team: what works and doesn’t work, what is frustrating, how they keep track of what is happening with them, etc. I focused on patients with complex health problems and those who were trying to get a diagnosis. For healthcare providers, I wanted to understand their thought process: how they approach the diagnostic process, how they manage time during patient visits, what their pain points are, and what they would improve.
This type of work is called ‘design research,’ and it is an early step in the process I use in all my design projects. The goal is to discover opportunities and information that will help shape the solution.
After my recent interviews, I combed through new and old interview transcripts and wrote down key insights on sticky notes. I then put all the notes up on a wall and organized them into themes. This is a process of insight distillation called affinity diagramming, and no matter how well I think I know the topic, it always helps to clarify and organize information in this way.
Now I would like to share what I’ve learned with you! I am open-sourcing my research so that we can collectively move forward with improving the patient experience and doctor-patient communication. If you think anything important is missing, please leave a comment for me.
Below is what I’ve learned — it’s organized into key findings with supporting quotes and information from my research.
Patients “start over” at each new doctor they see. It’s frustrating. They’re forced to repeat tests, treatments and medications.
- Each doctor he goes to, it’s like they’re starting over at day one. It’s so frustrating. (RB, caregiver)
- I don’t want to start at square one again — I want to show what does not work. (patient DJ)
- We end up repeating medication trials (doctor KB)
- The cost of switching doctors and system is high- have to re-explain everything (past research)
Patients are forced to tell their story over and over to different care team members — it’s tedious.
- Telling your story over and over gets boring and tedious for patients. (nurse practitioner MP)
- Unfortunately patients have to tell their story 5–6 times. Each doctor wants to ask it in their own way. (doctor MF)
- Patients repeat their story over and over to different people. We could be more coordinated. (doctor KB)
Different staff have different ways of recording the patient’s story — it can get fragmented.
- Anything to do with symptoms and exam findings — these are subjective to the person doing the exam and can be hard to sort through. (doctor MF)
- The story can get fragmented — different staff will have different ways of recording it. (doctor BV)
- When the docs take the oral history you wonder if they wrote it down right. (nurse S)
- One doctor gets the same info and another doesn’t get it. Doctors aren’t coordinating. They don’t have all the info they need. (caregiver RB)
Lack of time is a big challenge for doctors, especially when the patients are complex.
- There’s never enough time to feel like I’ve gone through enough questions and ruled out enough things. It’s the most frustrating thing. (doctor BV)
- Time limitations in office visits are one of the most difficult things people have to deal with. (doctor BV)
- The more they bring in, the more you have to do in 15 minutes. It’s not the best care. (nurse BM)
- It’s overwhelming for patients to only have 15 minutes to come in and get it all out.
- What is the most time efficient way to get the information across to the provider so they have a gestalt feeling about the patient? (doctor BV)
System (EHR) problems
Doctors and Electronic Health Records (EHRs) focus more on the recent past — there’s no easy way to see the full picture/trajectory.
- Doctors tend to focus on the more recent past instead of the whole picture/trajectory.
- Long-term view is good — I have nowhere to add what happened in the last 20 years. (patient BJ)
It takes a lot of effort to build a picture of a patient’s timeline by clicking around in the record.
- It would be a big effort to put together your health history by clicking around in the record. (nurse S)
- This is really valuable — a way to capture someone’s timeline, which is what we spend most of our time doing for patients who have had their care elsewhere. (doctor MF)
- You look at notes and try to put a history together. But there are tons of notes and it’s hard to find what you’re looking for. (nurse S)
- There is a lot of combing through notes and encounters. (doctor MF)
- We look through notes, look into other systems like Dartmouth. (doctor MF)
- Right now in chart review you have to look through all the tabs, remember pieces of info like dates as you click around. (nurse S)
Important info is hard to find and access in the EHR systems: symptoms, pain, imaging reports, etc. A lot of info is buried, especially unstructured data.
- Info in medical record is not easy to find. (doctor MF)
- Procedures get entered as scanned documents — you have to go look somewhere else to see the findings. Scanned documents are difficult to slog through, out of order, hard to read. (doctor MF)
- It takes a lot of combing through the chart to figure out pain levels, medication levels, etc — it’s kept in separate systems. (doctor MF)
- It’s a pain to click around and dig for info in the EHR. (nurse S)
- Doctors don’t want to sift through a huge pile of paperwork — they miss the rich qualitative data in there. (patient CC)
- Identifying what was found on imaging is hard — gets lost in the report. (doctor MF)
- It’s hard to get at less quantifiable data like notes. The data is stuck in the notes. There are symptoms and exam findings that are only in notes. (doctor MF)
Health histories are spread across systems, and activity is sporadic
- So much of my history is in chunks. (patient CC)
- You have gaps in the different systems that are used. (doctor MF)
- My care has been so sporadic. I wish I could have seen someone more consistently. (patient CC)
- The chart is not always reliable. Past records can be all over the place. (doctor BV)
Problems with verbal storytelling & recall
It’s hard for patients to remember and convey the timeline of their health history.
- With chronic conditions it’s hard to remember what happened over time — patients forget. (nurse CT)
- Patients get very confused if they have tried a lot of things — they lose track. (doctor KB)
- It’s hard to explain my health history in the right order. (past finding)
- Patients can’t give you a clear timeline. (doctor MF)
- When shit hits the fan it’s hard for me to access my info in a meaningful way — I get so focused on the short-term pain. (patient CC)
- Doctors’ attention span is short and it’s hard for me to convey the whole timeline. (past finding)
Doctors rely on patients and families to fill in missing info. But patients often don’t know this info.
- We rely heavily on patients or their family in addition to what is documented in the chart. (doctor MF)
- I like the results being there. Patients don’t always know their results. (nurse S)
- We can’t always easily tell how severe an allergy really is — have to ask them. (doctor MF)
Some patients cannot communicate well because of cognitive/mental issues — they can’t tell us what happened.
- We could better help people who can’t tell us what’s going on because they are psychotic — we have to rely heavily on the chart. (doctor KB)
- If patients have dementia or a lot of other medical issues, it takes a lot more time to sort through all the symptoms. But we don’t have enough time. (doctor MF)
The ‘undiagnosed’ (or misdiagnosed) patient experience
Undiagnosed/misdiagnosed patients can feel desperate, urgent, and like they have to advocate for themselves.
- I need to be my own advocate. (patient AS)
- Doctors don’t feel as urgent as I do. (past finding)
Patients switch doctors in an effort to get a diagnosis and sometimes get lost in the system.
- Undiagnosed/misdiagnosed patients often see a string of doctors to try to get answers. (past finding)
- I switch doctors when I’m desperate or need an answer (past finding)
- You get different opinions from different doctors and you don’t know what to do. (patient AS)
- Got stuck in limbo between specialty and primary care. (patient CC)
Chronic patients avoid following up on new symptoms or issues because it is so time-intensive and they have low confidence that they’ll actually be able to get help.
- Per recent conversations with patients NG and CG, my own experience
Patients become experts in their own experience — and they often have theories about what is wrong.
- I know more about his problem than most doctors who don’t specialist in this. (caregiver RB)
- I have theories about what is wrong with me (per many patients, prior finding)
Symptoms are important but are hard to see, understand, and prioritize
Doctors need to know about symptoms — quality, duration, etc.
- We rely heavily on symptoms (doctor MF)
- I want to know when it started what’s the quality of it, duration, etc. (doctor BV)
- Want to know quality of symptom — if it’s bleeding, how much, what does it look like? Etc. (doctor MF)
Doctors can’t understand how difficult it is to deal with symptoms and manage daily life.
- Doctors don’t understand my inability to get through daily tasks. (patient facebook group)
- Doctors don’t understand my pain, fatigue, and exhaustion. (patient facebook group)
- Doctors don’t understand what it’s like to manage many diseases at once — since they focus on just one set of symptoms/one specialty. (patient facebook group)
Patients with invisible symptoms feel that no one believes, understands, or listens to them.
- He would not take my pain seriously until he did an exam. (patient CC)
- I had all these symptoms — dizzy, inner ear issues, numbness. Nobody could prove it was from the chemo but I read books that talked about these side effects. No one believed me. It made me mad. (patient K)
- My neighbor has Lyme and has all these subjective symptoms. She feels like no one is listening to her. (nurse S)
- Doctors don’t believe symptoms they can’t see (past finding)
Symptoms that come and go are hard to see and explain — especially if they are not present at the time of the visit.
- If I don’t have the symptom at the time of my appointment it’s hard for the doctor to see and understand it. (patient SS)
- It’s hard to explain chronic/intermittent issues like skin rashes that can come and go. (patient BJ)
When patients’ symptoms don’t fit the standard picture of a disease, they are misunderstood and forced down certain paths.
- Docs don’t understand symptoms that don’t fit in with their idea of what my disease ‘should’ look like. (patient facebook group)
- We think, ‘does this fit what we know and expect for this disease process?’ we end up forcing patients into specific areas. (doctor MF)
- It’s frustrating when you have a lot of vague symptoms that could be attributed to a lot of things. (doctor MF)
Patients come in for one reason and then bring up something else. Doctors want to know — what’s bothering them most?
- People save up things to ask in the visit. It can be hard to focus on the thing they’re there for. (nurse BM)
- Good doctors pay attention — you have to figure out what they’re telling you and not telling you. (doctor MF)
- What has bothered the patient the most? What really caused the patient to come in? It’s not always the first thing they talk about. What’s really bothering them in the sea of symptoms? (doctor MF)
- A lot of symptoms wax and wane. What made you think this time was different? (doctor MF)
Benefits of visuals
Visuals are a helpful way to ‘see’ what the patient is feeling.
- It’s helpful to see how the patient is feeling. Everyone hates the pain scale! (nurse CT)
- Wish I’d had a video of certain times of the day to show his symptoms. It would have helped us make more progress. (caregiver RB)
- Photos are awesome — I get weird rashes and constantly take pictures. (patient BJ)
- I save photos to my phone but don’t hold onto them. (patient BJ)
- I need a private place to keep symptom photos that may be embarrassing. (patient SS)
- I need to show, not only tell, what is going on with me. (multiple patients)
Props and notes help patients and providers communicate better during the visit.
- It’s helpful for me as the doctor when patients are organized and bring their story (doctor MF)
- Bringing notes helps me remember what to say (multiple patients)
- Props and notes help me take advantage of the visit — they help me explain and get what I want. (past finding)
- Having this as a prompt for the patient and provider would be helpful. (doctor MF)
- I like the idea of something printable, even a summary. (patient CR)
When you can see clearer cause and effect relationships, you can see patterns, make changes, and regain control.
- It’d be nice to figure out if stuff is related — like if you got the flu shot and then had a spike in symptoms, is that related? (nurse S)
- Patients can show when they took a medication and whether or not they started feeling better — you can see the cause and effect (nurses L&L)
- My husband saw by tracking that he didn’t get better when they gave him a medication. So he got off it — he could show them visually. (nurse L)
- I want to know how to connect my physical and mental health. Is there overlap? (patient CC)
- When you understand your patterns you’re not controlled by them and can make changes. (nurse practitioner MP)
Stress is an important factor, and it’s helpful to see the impact it can have on your life and symptoms.
- Life events are important in the health history — even holiday travel can impact your health. (patient BJ)
- Stress makes my symptoms worse! (multiple patients)
- I want to see stressors, life changes, and how that affected their symptoms (doctor MF)
- I want to help patients understand the implications of stressors on their lives. (nurse practitioner MP)
- People will minimize the effects of stress on their lives. Seeing your stressors is a chance to make some big changes. (nurse practitioner MP)
- I like seeing the social history and life events. (doctor KB)
Some patients (super patients) are willing to enter/maintain information and bring it to visits.
- I need a place to keep track of it all. (patient CR)
- Right now I’m using google docs — I keep it updated. I share it with family members in case anything happens. (patient CR)
- I would like to enter information for my kids. I keep little books for them at home. (Nurse S)
- I print my updated medication sheet and bring it to my doctor (patients CR, LS)
Patients want to feel confident, like they were able to tell the story well and fully.
- When I go to a new doctor I want to feel confident and comfortable presenting my history and highlighting thing that were missed or not properly addressed. (patient CC)
- Even if the doc doesn’t want to interact, I want it to help me because I am visually oriented. I want to have all the values there at my fingertips. (patient CC)
- It’s important for patients to feel that they expressed their story to the best of their ability. Both the patient and doctor can walk away feeling more satisfied. (doctor MF)
What’s most important?
First, I need to prioritize which problems I am focusing on. Here are a few I see as key (at least right now), with the underlying assumption that I am trying to help mitigate diagnostic errors (undiagnosed and misdiagnosed patients) and all of the expense and harm they cause:
- Unnecessary repetition and lack of diagnostic progress: our current system forces patients to repeat their stories and retry treatments that have not worked in the past
- Difficulty telling and absorbing complex stories: it’s hard for patients to remember and articulate what happened, and it’s hard for providers to create a mental picture of complex stories
- Providers lack a deep understanding of patients’ symptoms: symptoms are a key piece of the puzzle but can be difficult to see, understand, and prioritize
What am I going to do with all this info?
Developing research insights is a key part of the design process — you may be wondering, though, how I plan use this information.
- I’ll create design principles to help inform what the solution should be like. For example — since cause and effect were important for people to see, one design principle might be to ensure the solution helps highlight relationships between data.
- I will put together basic personas, using these findings along with other research material, that highlight important attributes of users and stakeholders.
- I’ll develop use cases and scenarios that describe how the eventual solution might be used.
- I’ll tell stories about what I’ve learned in interactions with my team and others.
- I’ll share this article with my team, though it is a bit overwhelming — that’s why the above strategies are helpful for communicating key points.
I’ll also keep learning as I continue to speak with patients and healthcare providers, and I’ll update this information as needed.
Do you have an insight to share on this topic? Please leave a note in the comments!
Also — I’m very grateful to the people who have donated their time to talk with me.