This guest post by Irish blogger, speaker, patient and healthcare social media maven Marie Ennis O’Connor was originally published January 26, 2016 by Patient Empowerment Network, and reprinted here with Marie’s kind permission.
Designing with the patient in mind: Incorporating patient values, preferences and needs into digital health interventions.
“We are stuck with technology, when what we really want is just stuff that works.”
Douglas Adams, The Hitchhikers Guide To The Galaxy
A new report by Accenture reveals that just two percent of patients at hospitals are using the health apps provided for them. The research, which assessed mobile app use among the 100 largest U.S. hospitals, found that 66 percent of the hospitals have mobile apps for consumers and 38 percent of that subset have developed proprietary apps for their patients.
However, a mere two percent of patients at those hospitals are using the apps provided to them. This staggeringly low figure represents an alarming waste of resources in the healthcare industry.
Accenture found that “hospital apps are failing to engage patients by not aligning their functionality and user experience with what consumers expect and need.”
For example, only 11 percent of the apps surveyed offer at least one of three functions most desired by patients:
- access to medical records
- the ability to book, change and cancel appointments
- the ability to request prescription refills.
Brian Kalis, managing director of the health practice at Accenture, recommends that hospitals “must adopt a more patient-centric approach when developing new mobile health apps, or when revamping existing mobile apps.”
Respondents to a 2013 pilot study of 250 patient and consumer groups worldwide specified five main requirements of mobile health applications:
- Give people more control over their condition, or keep them healthy
- Be easy to use
- Be capable of being used regularly
- Allow networking with other people like them
- Be trustworthy
While all patients rated these five specificities as important, the degree of importance varied. For instance, those with a longterm chronic condition such as diabetes specified that their top priority for a health app is to help them manage their condition; while people with a condition that affects personal mobility such as a rheumatological condition placed ease of use as a top priority for their apps.
As I wrote in a previous article, app developers appear to be motivated more by the cleverness of a technology than actual improvements in health outcomes.
The lack of user involvement is one of the major reasons why health apps have failed to deliver thus far. We cannot design health care solutions or services without taking into account patient values and preferences and the context in which they live their lives. If an application does not solve a real problem for the patient, it will not be adopted.
The most successful health applications are those that understand the real-life problems that come with living with a condition and create solutions that meet real needs and make real impact. As Amy Tenderich, founder of Diabetes Mine, has said:
“We will use tools that answer our questions and solve our problems. We will avoid tools that help us do what you think we should do and we won’t use tools that add to the work of caring for ourselves.”
Alex Butler, in an article entitled How To Build Successful Mobile Health Applications, wrote:
“The question is not, ‘Does it solve a problem for the developer or even the patient’s clinician?’ The real question is, ‘Does it help the patient directly?‘ If an application is in any way a hindrance, or adds any further time to the investment people must make into their healthcare, it will not be used.”
Craig Scherer is co-founder and senior partner of Insight Product Development, a design innovation consultancy that specializes in medical devices, consumer healthcare, and drug-delivery systems. He recommends a design-approach which:
- understands the ergonomics and the physical experiences of how the device will be used (physical comfort and ease of use)
- curates the information that is most relevant to the user (making the most importation information visible first)
- puts the device in the context of a user’s environment and lifestyle (important to understand how the device will work in the patient’s own environment)
Developers must consider all aspects of the user’s interaction, not just the product itself. Adrian James, co-founder of Omada Health, a digital health company that designed a 16-week diabetes prevention program, recognized early on that one of the first steps in creating the company was getting user feedback – even before there was a product. James explained:
“We’d walk with people through their homes.We’d hear their story, and then we’d put this concept in their hands and just let them tell us about what it was.”
Build It And They Will Come
An oft-repeated pattern reflects the pervasive notion that if we simply build a solution the “right way,” patients will embrace it. Not so.
Dameyon Bonson, a national advisor on suicide prevention in Australia, is currently leading up a Movember-funded research project using digital interventions to help men take action on mental health. He firmly believes:
“There has been a rush to be ‘first’ to develop mobile health, taking the minimal viable product (MVP) approach a little too literally.
“MVP doesn’t mean serving up anything quickly; a lot of these mobile applications seem to have then been made ‘in a rush’. Evidence, and I mean good evidence, needs to support the development and I don’t think that (evidence) actually exists just yet.
“Simply automating what currently exists into mobile application, in my opinion is fraught with failure, and costly. Very costly. We are talking about the merging of two completely different worlds, mental health and technology.”
An app must seamlessly integrate into a user’s lifestyle to be accepted and well used; it needs to fulfill some kind of utility that is integral to our daily lives. It must also engage the end user. Dr. Mitesh Patel and colleagues have recently argued:
“Thee successful use and potential health benefits related to these devices depend more on the design of the engagement strategies than on the features of their technology.”
Stanford University behavioral health expert Stephanie Habif believes that emotional resonance is an important factor in designing successful health application:
“It’s not just enough to infect the brain and implant the knowledge. You have to stir up the desire engine. You have to tap into emotion.”
Health Does Not Happen In A Silo
The most successful health applications understand the real problems that come with living with a disease or condition, and offer something that genuinely helps. A failure to recognize the complexity of health systems and the reality of patients’ lives will continue to lead to short-sighted digital health initiatives.
It is patient input into a solution’s design, ongoing practice and evaluation that ultimately holds the key to the development and adoption of innovative therapies and clinical solutions that truly meet patients’ needs. After all, to quote Darla Brown – a cancer patient who co-created digital health company Intake.Me – in a Stanford MedicineX session on patients as entrepreneurs:
“Who knows better than the patient what will have the most impact on their ability to get and stay well?”
Co-panellist Michael Seres, a digital health entrepreneur and founder of 11Health, a connected medical device company, describes himself as a digital entrepreneur by accident and necessity:
“I was in hospital post [bowel] transplant with a stoma [a surgically created opening from an area inside the body to the outside] that leaked, and healthcare professionals asking me to measure output. I just assumed there was a solution, so I did what I assumed everyone would do. I asked other patients.
“Let’s face it, the greatest under-utilized resource in healthcare is patients. We usually have a solution for a practical problem. One thing is certain: we understand the end user needs. 20,000 patients online told me that there was no real solution to my problems, so I built one. I had one big advantage: I understood what I needed.
“It always amazes me that in healthcare we spend millions building solutions that the end users don’t want. Why? Well, often we are never asked.
“Would Amazon build a platform without consulting the end user? Would GM produce a new car without understanding their consumer? So why do we do it in healthcare? At every step, I consulted patients and healthcare professionals as to whether it made sense. It just seemed obvious to me to do it this way.”
We have now entered an age in which the digital world will revolutionize health care, much as it has done in other industries. Yet while digital technology is poised to transform healthcare, its full potential will never be realized unless stakeholders work alongside patients in co-designing solutions that will truly engage, enable, and empower the end-user.
To quote the late Jessie Gruman, founder of the Center for Advancing Health, in an open letter to mobile health developers:
“While I can’t promise you that consultation with us is the magic key to successful, well-used apps, I can tell you that without it, your app doesn’t stand a chance.”
© 2016 Marie Ennis-O’Connor
Q: Are you using some form of digital program or health device that’s supposed to be helping you manage a medical condition? Why or why not?
- Patient engagement as described by 31 non-patients
- “Us” vs “them”: the under-served patient speaks up
- “We are all patients.” No, you’re not.
- Why 74% of smartphone apps are dropped by the 10th use
- Open letter to mobile health app developers and their funders (the late Jessie Gruman’s classic essay)
- Self-tracking tech revolution? Not so fast…
16 thoughts on “Designing with the patient in mind”
I feel that my “anxiety attacks” are being caused by something i am being exposed to. I get hot and sweating. Have a hard time swallowing and feel faint with head ache. My companion also gets them and shakes.
See your physician, Amelia.
Another issue that I find extraordinarily frustrating is getting information about test results.
It is generally easier to get them online, but if that is not possible, as when someone is hospitalized, then it can be like pulling teeth to get the information. My husband was recently hospitalized for chest pains (he is fine, but with two stents alarm bells go off when he goes to the ER). Well, they ran multiple tests and shocking as this may be to the medical staff, we are actually informed about these things. Our cardiologist is highly forthcoming but sadly he is about to retire and he wasn’t there for that episode.
But in the hospital, I wanted to slap some of the nurses and attending doctors as even asking what his blood test results were seemed to be perceived as overstepping our “boundaries” as person and person’s wife.
I suspect that quite a few mistakes could be prevented if the “patients” were more engaged. I think it is our moral duty to educate ourselves as much as we can and as our abilities allow on how to take care of ourselves and keep ourselves healthy.
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I wonder why we can access our diagnostic test results outside of the hospital, but not when we are IN hospital?! This is often true for in-hospital procedures and treatments as well. I remember asking the ER nurse what drugs she was administering to me (right before I was being transferred upstairs in mid-heart attack). She simply said: “Plavix” (a drug I’d never heard of until that moment). “What is this drug for?” I had to ask her. But the fact that I was bothering her with my questions was clearly annoying to her. I now advise all patients to make sure they do understand every test, every procedure and every drug before (not after) they are delivered to them.
Every one of my doctors has a patient portal. Each with its own name, and a password. When I want to share information from one specialist with another, I have to log on to the portal (which involves once again discovering its name, my user id and password), get to the data, send the date TO THE PRINTER and then mail the data to the other specialist. None of these things talk to each other. The only advantage I have seen is that I can get the data without talking to anyone.
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Well, that’s just stupid, isn’t it? Compare that to my visit to a neurologist here (West Coast, Canada) who was recommending I get a diagnostic test for a possible issue, but first she suggested that we could look at the slides from a recent pelvic ultrasound I’d had to see if that test had also caught part of the spinal area she was interested in checking out. Bingo! On her office laptop, neurology can instantly see records/diagnostic scans from ob/gyn. Isn’t that is as it should be?
Good post. I have a few patient portals/wellness sites and do not use them as they do not provide me with what I need…….ongoing symptom management.
Going to portals to fetch data on healthcare encounters/tests does not mean that I have help in managing my cardiac symptoms nor does my compliance with seeing healthcare providers resolve my daily symptom complaints. Compliance may look good on a portal program but says “diddly squat” about how I am doing or if I was erroneously directed to yet another portal connected information site based on an ICD code which the physician has already resolved.
Ditto on written reports from specialists to PCP! Rarely, since 2005 have I RECEIVED a call from PCP or other specialist on results written within a report. I shouldn’t have an appointment with a doctor and have to ask “Did you read the report?” I follow up 99% of the time to be sure that I do NOT need another appointment to get information about any test result and further action.
Once a suggested diagnosis falls within a “best code” scenario, then portals can easily misdirect the patient to unneeded worry.
I still do online sites or private groups to ‘get and give’ healthcare management for the most basic of chronic angina care. There is great value to connecting with other patients even if most physicians do not like Dr. Google or those “other” patients.
This post does not negatively reference the value added to online medical records that can be viewed by healthcare providers within a network.
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You tell ’em, Joan! I’m with you about the value of online support groups (as Susannah Fox once said: “Patients know things!”) I’d add here that on top of the infamously dismal lack of general communication between GP and specialists (and vice versa), communication from hospital cardiologists to the GP of the heart patient can be non-existent. When I showed up for my first follow-up appointment with my GP post-heart attack, she knew nothing (translation: “diddly squat”) about my hospitalization. The name/contact info of my GP was on every chart, every test result, every procedure report during my entire hospitalization. How hard can it be for somebody, anybody to simply let the GP know that her patient of 31 years has just had a heart attack?
Recently I was referred to an orthopedist and he was all set to run x-rays again when I told him that copies from the family doc had been sent; they double checked and yes. Saved time and money. Now, the cardiologist and family doc systems are linked so they can see test results. If I’m not sure if they can “talk” to each other, I print out lab work from one office before visiting another as those lab tests are expensive and it just saves time. But again, it takes being pro-active on the part of the patient. I think we have to change our mindset from being cared for to managing our own care with professional help.
I personally like the idea of scheduling my own appointments. By being able to describe in my own words what is happening I think it is more accurate than when the information gets put into different words by the scheduler and/or the receptionist. One doctor I see uses online scheduling (phone-in scheduling is also available) but both types of appointments have to complete the same form with the same questions prior to seeing the doctor. The form is available both online and in the office.
With the freedom to communicate directly, I have felt much more confident that the physician was completely informed.
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Thanks Helen – such a good example of how (online, phone-in or in person), certain basic information MUST be communicated when arranging appointments.
I’ve frequently been surprised when I show up for appointments (the reason for which I’ve explained in exquisite detail to the receptionist over the phone in order to book that appointment) only to learn that none of those details have been communicated to the physician!
I am all for healthcare platforms and patient advisory forums. It is helpful to find out how someone else is dealing with the same problem. HOWEVER, please don’t think you should be able to schedule your own appointment online. Healthcare appointments are not the same as “getting your oil changed” or a “simple manicure”. Much more information needs to be gathered by the receptionist to determine how long your appointment is scheduled for and with who and why. Otherwise you are wasting your time and the doctors.
You’re right, Jennifer – scheduling an online medical appointment isn’t the same as booking an oil change or manicure, but that doesn’t mean it doesn’t work. Just the opposite, in fact: 40 of the top 100 largest health systems in the U.S. are already offering patients the option to self-schedule about half of their medical appointments. The way appointments are being currently scheduled, let’s face it, too often results in overcrowded waiting rooms, several patients overbooked for the same appointment time, minimal ability to fit in last-minute emergency patients, or poor management of ‘no-shows’ leaving gaps where those needy patients could have been accommodated – and that’s with real live appointment schedulers at the desk! Self-scheduling couldn’t possibly work worse that this.
Personally, I’m excited to one day be able to self-schedule my own appointments.
As with so many things, it depends. With my HMO I can book appointments online, but I rarely would, except perhaps for the most routine checks. Several times when I used the online method, even after I clicked that the matter was Urgent (though not life-threatening), I was offered appointments 6 weeks to 2 months away. When I pick up the phone and talk with a human being, I often get in that very afternoon or the next day.
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Hi Kathleen – waiting “6 weeks to 2 months” for an “urgent” appointment request!?!? That system needs fixing. Yesterday.