Patient Centered Design


Design Thinking – Is the confidence that everyone can be part of creating a more desirable future, and a process to take action when faced with a difficult challenge. (

As a newly minted ePatient Scholar, I have entered a whole new world of terms, ideas, and communities about health and capitalism that I never new existed even a year ago. It’s confusing, interesting, intriguing and scary all at the same time. I’m now more empowered as a patient, which has improved my overall health all the while inspiring others with similar problems by sharing my story and continually advocating for arthritis awareness. However, I’m still very much an evolving patient (student), which means I’m nowhere near done learning or discovering.

One area I’m still learning about and discovering is this idea of Design and Design Thinking. My background consists of running political campaigns, teaching skiing, and earning 2 degrees in political science and accounting (my odd background fits my personality I like to think :)). Designing meaningful solutions for my community, my health care system, or myself is just something I have no real experience or education in. I’m an expert at teaching people how to turn sticks on snow or removing political rivals from office, not designing for the greater good.

However, now that I’m ePatient advocate I’m getting all kinds of requests to look at such and such product because it can either cure my arthritis or is the next miracle product for the greater good. My fellow ePatient advocates and friends are being bombarded with similar offers and claims all the time too. Design and design thinking unfortunately seems to have turned into buzzword in order to sell useless products that don’t help patients. My hope is to use my current knowledge in order to fight against this and bring the concept of Design back to its original intent, which is to help patients increase their quality of life.

My First Experience with the Idea of Design

During last years Medx, I had an incredible headache that was not getting any better no matter what I did. The conference had created a Wellness Room that I should have retreated too, but at this point in the pain, I decided it would be more beneficial for me to go outside away from the conference and building. For some reason exploring the campus of Stanford University with my new DSLR camera sounded like a better idea than going to the Wellness Room. So during one of the extended breaks I snuck outside in order to do some exploring.

I was not more than 10 feet away from the building when I meet a visiting professor from Sweden who had a PH.D in computer science. Katarzyna, who was also attending Medx, was taking the opportunity of the break to go back to her office in order to drop something off. After exchanging hellos, she immediately recognized my ePatient badge and invited me to walk back to her office with her while explaining my patient history.  Dr. Katarzyna was intrigued by my condition and wanted to know specifics about how my pain and arthritis affected particular aspects of my life like work and my social life.

After hearing my story she began to tell me about some amazing work computer engineers where doing in the field of wearable sensor technology. While describing these sensors capabilities to me, I started to ask questions about whether these sensors could tell if my posture while sitting at my computer at work was off. She thought they probably could. We talked about this some more and came to the conclusion that someone probably had technology where sensors could be placed in work clothes for the purpose of giving arthritic patients real time feed back on their posture while at work. This information could help the patient sit better in the hopes of reducing pain while giving engineers real time information on how to better design work spaces for companies.

This conversation took place in the span of about 20 minutes. I was incredibly energized and intrigued after visiting with Katarzyna despite my headache (this story is a perfect example of the magic of Medx, you never know what might happen or whom you might meet). Unfortunately though, being a political operative with a skiing addiction meant that I had no idea how to continue with this design idea in order to make it a reality for patients and myself.

A Patient Centered Design

The following is an idea I’ve been thinking about for years now. As far as I know, no company or individual has developed it so I’m assuming this is an example of an undeveloped patient centered design concept or idea. For the purpose of my post, I’m hoping it will illustrate the point of patient centered design versus developing an innovative idea in the hopes of selling it to patients.

For those of you that don’t know my history, I’m up to 7 surgeries relating to my arthritis condition. I’ve got plates, screws, and even had to travel to the University of Utah for one of the surgeries. Due to these procedures, I’ve spent years and tens of thousands of dollars on physical therapy. This means I’ve collected hundreds, if not thousands of Explanation of Benefits (EOB) from various insurance companies. Even for a tax accountant paper pusher like myself, this is a maddening amount of paperwork to keep track off. More importantly, keeping track of this paperwork means I’m not working on healing and recovering from these surgeries. Surely, something can be done to change this.

For those of you that don’t know, most physical therapy sessions are billed in 15-minute units. I’m still not entirely clear, even after all these years, what a unit is defined as, that seems to be solely at the discretion of the physical therapist. However, from my various EOB’s I do know that a unit of PT costs me $45.00. So my questions is why couldn’t an app be developed where a patient could enter the date of the PT session, the number of units the PT is charging for that session, the dollar amount per unit which could be retrieved from previous EOB’s, the percentage ones insurance is currently paying, and be able to store a photograph of the check out slip which contains the number of units being charged. This would give me a quick and easy way of keeping track of the cost of physical therapy while freeing up more time and reduce the stress of matching EOB’s with charges from the PT office.

Ideally, this information would be able to be transferred to some sort of excel spreadsheet. That way when I receive a bill from the PT office I can quickly compare date of service information with what I have storied in the app. This would provide me with a check on the billing department (can you tell I have a degree in accounting?) of the PT office while giving me away of avoiding sticker shock of my treatment thus reducing stress.

I consider this a patient centered design for several reasons. First, this idea comes from a patient with the hopes of making my, along with other patients, lives easier. If there is one thing our health care system is great at that is creating paperwork. This idea combats that. Next, this idea allows patients and computer engineers/designers to work together to develop a solution to a common problem for the greater good of patients. It keeps the focus on patients but realizes working together for the greater good will only solve this problem. Finally, profits from developing this solution will come from solving this problem with a quality product, not from appealing to the financial concerns of shareholders. Profit motive is important in patient centered design but it can’t be the main focus. Profit has to come from developing a solid product for a problem, not from marketing a product for a problem that may or may not actually exist. The latter example removes the patient from the equation, which is the most important part of any health care system.

Innovation as a Buzzword

The following are 2 examples of fictional companies that were developed solely for the purpose of illustrating my point of patient centered design versus innovation just for innovation sake in the hopes of selling to patients. If my examples hit a little to close to home for some of you, maybe you need to reevaluate some things about your company. P.S. Epatients would be happy to help you return to a more patient centered company if you need help just to let you know.

First, any companies that use weird CAPitals (I recently got an email from a company called ZetrOZ Inc that is currently sitting in my trash bin) in their name or are marketing the XXXX 5000 are not patient centered companies. These companies are trying to make profits based on fear tactics or spam marketing techniques. Their products are created quickly, without consultation from ePatients, patients, or doctors of medicine, with the hopes of selling them to uneducated patients with a medical literacy rate of a 5th grader. They are our time period’s snake oil salesmen.

It is important to point out that medical devices like ice packs, crutches, or knee braces are successful because they keep the focus on patients and don’t need snake oil salesmen. They set out to solve a particular issue a patient was having with their health, not to make a quick buck. These companies don’t need to advertise much or clog our e-mails because they work and patients know that. More importantly, patients are more than happy to recommend these products to their family and friends.

My second example is more difficult. Lets say a company named 46 and I wanted to sell you your entire DNA history for a small fee like $149.99. For this fee, 46 and I will send you a kit that all you have to do is spit into and 4 to 6 weeks later you will be able to know your entire DNA make up, probability of developing a particular disease, and can now locate family members around the world. Sounds great right!

This might sound like a wonderful idea on the surface until you dig deeper. With a little research you discover that 46 and I has not been responding to repeated FDA attempts to obtain data in order to determine whether their technology is accurate or not. Now, I will fully admit that the FDA is a slow, antiqued department that has not kept up with technology. However, they do have a long history of putting patient safety has its number one priority so I can literally live with them being slow. Besides, 46 and I is in the business of DNA analysis, not changing the procedures of the FDA. That is a different conversation completely.

Doctors are all for patients gaining more information about their health, especially when they don’t have to charge their patients a bundle for it. However, without the FDA’s stamp of approval on 46 and I’s techniques of DNA analysis, some doctors might become skeptical and order the same DNA test to be redone in order to verify the results of 46 and I. Now the patient has been charged twice for the same test just because 46 and I did not want to play nice with a government agency. This is not benefitting the patient.

Also, the average medical literacy rate in the United States right now is on a 5th grade level. We love technology, especially when it returns very cool information like our DNA make up, but we have no idea what the information means. It is like possessing the newest and latest toy. We will share it with our friends at cocktail parties or around the water cooler at work but rely on Dr. Google for translation and diagnosis. Also, without a doctor’s consultation, patients are now at risk for undue stress or for mistreatment because they did not have the complete picture or understanding of the DNA analysis. This is not benefiting the patient.

Finally, the patient might not realize that 46 and I is making its real money off storing the patient’s data in a giant database in order to sell it to researchers later. This brings up moral, ethical, and legal questions about who actually owns the data at this point. Is it 46 and I’s or does it still belong to the patient. These are conversations that do not benefit the patient or future patients because it’s a tricky issue that usually ends up in courts for years and years.

My Conclusion

Design and Design Thinking is a critical component in developing a truly patient centered health care system. W need educated designers that realize there is a technique and process to Design that takes education and experience in order to develop fully into products and ideas that benefit patients. Patients are a critical component of the Design process that should and must be involved in order to be successful.

When a company looks at a patient as a dollar sign only then they are basically useless in a patient centered health care system. Health care solutions need to start with the basic idea of improving a patient’s quality of life, not with improving the bottom line of a shareholder. A shareholder and patient can and should work together with the common goal of improving their particular community, their health care system, and themselves.\

As a newly minted ePatient, I can offer several things right now. First, and most importantly, I have my particular story and experience to offer. I have ideas and hopes for the future based on my experience as a patient. Secondly, I have a knowledge base and access to resources that a healthy person does not. I know patients inside of my own disease community along with other patients and leaders in other disease communities that are almost begging to be involved in designing products for the future. Finally, I have a strong desire to improve my community, my health care system, and myself as a patient.

Patients are the only truly experts of their own body. Doctors might understand my anatomy better, companies might understand innovation better, but I understand what hurts and what I need in order to be well again better!






Patient Centered Design — 2 Comments

  1. Hey Alan, I enjoyed reading this post. I like it when people assert stuff, because then you can have a real discussion about things. Hope you don’t mind if I add some of my candid thoughts.

    First off, I agree on the patient-centric design. Of course, I get contacted far less by people selling stuff because they think that I’m selling something, but your experience of charlatans is interesting and echos Afternoon Nappers view.

    Just some food for thought. You mentioned that the FDA has patient safety as the number one priority. If you look at the purpose of a PMA:

    It is to assure that treatments/medical devices etc. are “safe and effective”. It’s the effective part that gets pretty tricky.

    There are two approval processes, PMA linked above, and 510(k). My understanding is that to get PMA for a new drug you need to prove that it is “safe” and that it’s more effective than placebo…which is a tall order because placebo is pretty effective for a lot of conditions. PMA is very expensive and time intensive, so a lot of companies target the 510(k) path. But in order to get a 510(k), you need to show that your device is as effective and safe as another solution that has already gotten PMA. So you could have a low cost x-ray system that would be great for poor inner cities or rural areas, and maybe it costs 30% what another system costs, but unless it has the same resolution as another PMA device, you will not get approved. It’s safe, it’s inexpensive, but it’s illegal because it’s not as effective as some other x-ray system.

    The “effective” mandate becomes problematic because it means that instead of device manufacturers focusing just on patient needs, they’re incredibly focused on FDA approval. In fact the requirements are so onerous that some of the youngest and most innovative medical device companies my colleagues and I work with market their wares primarily outside of the U.S. It’s a tragedy to see that American Citizens don’t have a right to access cool technologies available to Brazil, Russia, and China.

    Anyway, if the FDA solely focused on stuff being safe, and left the rest to us to decide, we patients would control a lot more value. As it is now, the FDA is a like a bathroom door — great for those on the inside, lousy for those on the outside. Big medical companies love being on the inside.

    Now that we have that established, you can see why the case of 23andMe is not so straight forward. The FDA is not saying that 23andMe is unsafe per se, but what they’re saying is that their stated medical risks have not been deemed “verified” by the FDA. The FDA has a right to regulate companies claiming to offer medical diagnostics, which 23andMe was, so IMHO, the FDA is basically doing its job. However, without massive amounts of genetic data, 23andMe can’t show that their claims are effective. 23andMe can’t say as much, but they may have dropped communication when they realized there was no legal path for their business model.

    In my opinion, this is bad for patients. 3 months ago we had the ability to contract with a genetic analysis company at our own risk. Today we have no such ability. Something of value has been taken away from us. The next time we see genetic services they’ll probably be in the form of $500 packages that require genetic counseling as mandated by the FDA to explain basic statistics to us and billed to our insurance. It’s not hard to imagine why a lot of big medical companies would prefer genetic services be $500 rather than $99. Anyway, that went longer than I’d intended…

  2. Familiar with Rube Goldberg? Many (most?) large systems wind up looking like they were designed by Rube Goldberg eventually. Or they’re the storied “mouse designed by a committee” (translation = elephant).

    Design thinking in healthcare has, long and long, been more about easing clinical workflow and streamlining revenue capture than it has been about patient-centered design. That’s not the fault of the healthcare system, really, ’cause industrial design thinking influenced every industry’s process design throughout the 20th century. Now comes the “patient-centered” idea, and the healthcare system is still struggling to leave industrial design thinking behind.

    That’s the power of having patients in the room *when* a system is being designed. Not to drive, but to *inform*, process development. I think that’s all patients are asking for, and we should get what we’re asking for!

    Oh, and I really like your unit-cost tracking app idea. As a cost-transparency advocate, that sings to me.

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