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 [1]reveals that just two percent of patients at hospitals are using 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 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; and 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:

  1. Give people more control over their condition, or keep them healthy
  2. Be easy to use
  3. Be capable of being used regularly
  4. Allow networking with other people like them
  5. Be trustworthy

Whilst all patients rated these five specificities as important, the degree of importance varied. For instance, those with a long-term 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, cofounder and senior partner of Insight Product Development, a design innovation consultancy that specializes in medical devices, consumer healthcare, and drug-delivery systems recommends an a design-approach which:

  • Understands the ergonomics and the physical experiences of how the device will be used
  • Curates the information that is most relevant to the user
  • Puts the device in the context of an user’s environment and lifestyle

Ergonomics concerns physical comfort and ease of use; curation means making the most importation information visible first; and finally, it’s 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, recognised early on that one of the first steps in creating the company was getting user feedback – even before there was a product. “We’d walk with people through their homes,” James explained, “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 “that 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 that “the 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 behavioral health expert Stephanie Habif believes that emotional resonance is an important factor in designing successful health applications. “It’s not just enough to infect the brain and implant the knowledge”, she said, “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 revolutionise 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.”


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Resource Links

[1] Accenture 

[2]

10 replies
  1. Carolyn Thomas
    Carolyn Thomas says:

    Hello again Marie and thank you for this!

    The title of this important essay drives me stark raving bonkers.

    Not because this title doesn’t make perfect sense, but because it implies (correctly!) that “designing with the patient in mind” is some kind of new and exciting concept for the tech hypemeisters out there to consider for the first time.

    Here’s what I’m wondering: who on earth have these designers (who are ostensibly designing stuff for patients) actually had in mind up until now if they WEREN’T thinking about the “values, preferences and needs” of their own end users?

    I’ve been writing (well, ranting, mostly!) about this topic ever since my own 2012 trip down to Silicon Valley to attend Stanford’s Medicine X conference. There, I was introduced to a whack of exhaustingly keen tech types, most busy garnering venture capital for their startups while creating the Next Big Thing – the launch of which was surely going to change healthcare and quite possibly life on this planet as we know it! I was dismayed to learn that so many of them hadn’t actually been within 10 feet of a real live patient until they were almost ready to launch their tech/app/device/tracker into the marketplace. The dismal stats you mention here are the predictable end results of such self-absorbed ignorance of the patient/user. As you say, many seemed “motivated more by the cleverness of technology than actual improvements in health outcomes”.

    I love the range of intelligent people you’ve mentioned in this article, each one offering an even more pithy quotable quote than the one before in support of what each of us have been saying. I’d love to reblog this on Heart Sisters, with your permission.

    Kindest regards,
    C.

    • marieennisoconnor
      marieennisoconnor says:

      Hi Carolyn, you are absolutely correct in what you say. Even with the best of intentions, most healthcare solutions from policies to research to mobile apps are not created to fit a patient’s lifestyle and needs. The best solutions come from the patients themselves and it is encouraging to see more patients as designers getting the funding and recognition they deserve. Please do re-blog on your own website. I always appreciate hearing your thoughts. Marie

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  3. […] “Marie Ennis-O'Conner explains how the potential of digital technology will never be realized if unless the stakeholders work alongside patients in co-designing”A new report by Accenture reveals that just two percent of patients at hospitals are using 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 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; and 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.”  […]

  4. […] Marie Ennis-O'Conner explains how the potential of digital technology will never be realized if unless the stakeholders work alongside patients in co-designing  […]

  5. […] Marie Ennis-O'Conner explains how the potential of digital technology will never be realized if unless the stakeholders work alongside patients in co-designing  […]

  6. […] Marie Ennis-O'Conner explains how the potential of digital technology will never be realized if unless the stakeholders work alongside patients in co-designing  […]

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