‘When Doctors Don’t Listen’ – a catalyst for better healthcare by design

Over the past month I’ve been reading a wonderful book called ‘When Doctors Don’t Listen: How to Avoid Misdiagnoses and Unnecessary Tests‘ written by Doctors Leana Wen and Joshua Kosowsky. Here’s a partial description of the book from Amazon:

In this examination of the doctor-patient relationship, Drs. Wen and Kosowsky argue that diagnosis, once the cornerstone of medicine, is fast becoming a lost art, with grave consequences. Using real-life stories of cookbook-diagnoses-gone-bad, the doctors illustrate how active patient participation can prevent these mistakes. Wen and Kosowsky offer tangible follow-up questions patients can easily incorporate into every doctor’s visit to avoid counterproductive and even potentially harmful tests.

How relevant and timely a topic, as the topic of healthcare costs (and waste) is reaching a fever pitch; the book is also of particular relevance to me, as I have certainly spent a lot of time struggling to explain my situation to doctors and have felt buried under piles of lab reports, many of them unnecessary duplicates. Overall, I have gotten a lot of useful advice from the book and I plan to send it around to my parents and some of their friends. 

Throughout the book the authors present a series of tips and best practices for patients, so that patients can really maximize their experience with doctors. I’ve been thinking, how could we best use these tips as a jumping off point to design applications and services that empower patients to take control of their health? Below I’ve listed the authors’ ‘8 Pillars to a Better Diagnosis’ …and below each one, I’ve included a list of questions (in the classic ‘how might we’ format that I learned in Future Problem Solving back in middle school, and also of IDEO fame) intended to prompt design ideas that support these pillars.

1. Tell your whole story

What it means: Tell your complete story, from the beginning; make sure to communicate what is most worrisome to you; answer close-ended questions with a narrative; interrupt when interrupted. Telling your whole story provides clinicians with the rich detail and context that they may be missing by asking close-ended, yes-or-no questions. (Side note, I was excited to see the emphasis the authors placed on visual storytelling, given my work using timelines to express my medical history and communicating symptoms on the body.)

  • How might we help patients tools to help them express their story coherently: verbally, visually, aurally, and perhaps in a tactile way?
  • Visual storytelling is a big opportunity because of its efficiency; how might we support visual storytelling?
  • Elements of change or surprise are important to a medical story; how might we help patients communicate change over time or something that surprised them?
  • How might we help patients prioritize their concerns and questions in advance of a doctor visit?
  • How might we support patients in articulating what is bothering them most?
  • How might a medical story be portable, so that patients can take it with them?

2. Assert yourself in the doctor’s thought process

What it means: Ensure that you know why the doctor is doing what they are doing; what they are looking to ‘rule out’ through the use of tests, or what they are ‘working up; ask questions to clarify what the doctor thinks may be going on with you.

  • How might we support patients so that they know the right questions to ask at the right time?
  • How might we help make doctors’ thought process more transparent to patients?
  • Is there a way to enhance the doctor-patient discussion by making the data in the EMR more visual – to make it tell more of a story that is legible to both patients and doctors?

3. Participate in your physical exam

What it means: Undress and expose the part of your body that is troubling you; point out anything unusual or anything you are concerned about; describe your symptoms as specifically as you can during the exam; ask the doctor what they are looking for when they are examining you.

  • How might we help patients make clear what part of their body has been bothering them?
  • How might we support doctors in making their thoughts more clear during the physical examination?
  • How might we help patients better describe their symptoms?

4. Make the differential diagnosis together

What it means: Ask the doctor what she thinks may be going on with you; ask for clarification if anything is unclear.

  • Again, how might we help make doctors’ thought processes more transparent; how might we expose the possible differential diagnoses to patients?

5. Partner for the decision-making process

What it means: Ask questions to understand all of the possible options for moving forward, and the rationale behind those potential avenues; make sure to express your preferences and concerns.

  • What tools or props could help provide the right information at the right time to help patients understand their options and make decisions?
  • How might we help patients speak up at the right time to make their opinions and preferences heard?

6. Apply tests rationally

What it means: As a patient, make sure to ask what any tests are looking for and why they are being performed; understand whether or not tests are necessary; ask what abnormal results really mean.

  • How might we help patients better and more efficiently understand what the planned tests are for?
  • How might we help patients better understand their lab results?
  • How might we help patients decide whether a given test is worth the cost (both financially and potentially with regard to their own health – like being exposed to radiation)

7. Use common sense to confirm the working diagnosis

What it means: Do a gut check to make sure that the working diagnosis is logical, given your symptoms and concerns; ask what else could explain your symptoms how the doctor knows you don’t have those things; do your own research about the diagnosis; make sure the doctor tells you what to expect and what ‘red flags’ to look out for.

  • How might we support patient ‘reality checks’ with regard to their diagnosis; making sure that the diagnosis seems to align with their symptoms and primary concerns?
  • How might we help patients understand what happens next?

8. Integrate diagnosis into the healing process

What it means: After diagnosis, ask for your doctor’s help in understanding what the course of your illness/healing may look like; understand that you always have treatment options, even though your doctor may be guiding you toward just one.

  • How might we ensure that a diagnosis – even a difficult one – is the first step toward healing?
  • How might we help patients understand the course/trajectory that a given illness may take?
  • How might we help patients understand that they have options for treatment?

***

Some of the concepts here I’m hoping to put into practice, and I’ve been doing some work already with a company called Medical Avatar to work toward helping patients visually represent their symptoms on a 3-D body.

Overall this has been a fun exercise, and I hope that these questions may spark some design ideas that could help improve the patient experience and reduce some of the inefficiencies we’re seeing in healthcare today.

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