Utilizing patients in the experience design process

A version of this post has been published as an interactions magazine blog post.

Dave deBronkart (a.k.a. e-Patient Dave) is quite well-known for his assertion during a TED talk and at other times that patients are the most underutilized resource in healthcare. I think that underutilization extends to the healthcare and patient experience (re)design process. Part of the reason for this lies in some of the views of the roles patients can effectively play.

At Medicine X 2013, Sonny Vu ruffled some feathers when he said that, in his company's design process for wearable sensor products and services, they don't ask users what they need or want, but rather observe user behavior. Attending the conference was a large contingent of ePatients who have done a lot of work identifying what they need and want and then doing something about it [see my Learning from ePatient( scholar)s blog post]. In no time, Sonny was challenged by ePatients in the audience, and the controversy became a point of significant discussion among the ePatients after that session.

This is an issue that comes up often, and in my UX teaching, I share and contrast views that you do ask users what they need and want with views that you observe user behavior instead.

Can users know what they need? Can users know what will solve the problems they encounter? Many have argued that the answer is "no" and consequently choose to conduct no design research at all. However, others argue:

Similarly:

But what can you learn from spending time with users? User experience design researcher Catalina NaranjoBock tweeted a partial answer, echoing an assertion made by Sonny Vu:

Karen Holtzblatt has written often about this, but she goes further:

"Don't ask your customer what they need or want or like. People focus on doing their life. So if you ask them outright, people can't tell you what they do or what they want. It's not part of their consciousness to understand their own life activities."

Yet, in the world of patient experience, views such as Ann Becker-Schutte's are being expressed:

And in the experience design world, co-design -- the involvement of the user or customer in the design process as designers -- is increasing in popularity.

So how should one proceed?

IDEO's Dennis Boyle is among those who argue for the need to focus design research on edge cases:

John Hagel, co-chair of the Deloitte Center for Edge Innovation, makes a similar argument, stating that one should explore emerging innovations on the edge that are rising up to challenge the core. In a presentation I made at HxD 2013, I pointed out that those on the edge in the world of healthcare include participants in the quantified self movement, participants in peer-to-peer healthcare, and ePatients, three groups which overlap. Quantified self participants continually document aspects of their health and experience, peer-to-peer healthcare participants actively engage with other patients about their health and experience, and as stated by Leslie Kernisan, "...e-patients aren't like most patients. They're more motivated, more medically sophisticated, ..." One can argue that such behaviors and qualities make such people better able to know what they do or what they want or need.

But there is much to be learned from typical patients as well, and observational research might be particularly favored in such cases, though even typical patients have important insights to share. Fortunately, a trend is developing to both ask and observe, and to co-design. However, it is still the case that, whether you are talking about ePatients or most patients, patients continue to be the most underutilized resource in the badly needed redesign of healthcare and the patient experience.

Learning from ePatient( scholar)s

A version of this post has been published as an interactions magazine blog post.

Increasingly, patients are making invaluable contributions to the redesign of our broken healthcare system and the patient experience. Designers working in healthcare should be aware of and leverage these contributions.

Among the facilitators of this is Medicine X, a fabulous conference held annually in September at Stanford University. As stated by the conference organizers:

"Medicine X aims to bring together the best and brightest doctors, patients, academics, and industry leaders to talk about emerging technologies and how best to improve healthcare." 

"We seek to empower patients and give them a louder voice in healthcare discussions." 

"...patients are a core set of stakeholders. Yet they typically haven't been meaningfully represented and engaged at academic medical conferences. We want to change that."

To fulfill this goal, Medicine X invites select ePatient scholar applicants to attend the conference and some ePatient scholars to participate in the conference organizational and planning process. What is an ePatient scholar?

"ePatient scholar: 1. A specialist and expert who is highly educated in his or her own medical conditions and who uses information technologies (e.g., Internet tools, social networks, self-tracking tools) in managing their health, learning from and teaching others. 2. (Stanford Medicine X ePatient scholar) An educator and role model for other patients and health care stakeholders."

A valuable contribution provided by all of the ePatient scholars (and many, many other patients) is the story of their patient experience. Many of these stories are gripping, documenting much of what is wrong with healthcare and suggesting fixes. Some stories can be found in blogs; some stories can be found in online patient communities. During Medicine X, some stories are shared on stage. An example is that provided by Britt Johnson (pictured nearby) at last year's conference; the video of Britt's talk is essential viewing.

EPatient scholars' patient experiences form the basis of and provide the motivation for many of their additional contributions.

Two misdiagnoses and the urgent implant of a cardiac defibrillator made Hugo Campos realize how crucial it is for patients to engage in healthcare decision making with clinicians. This has prompted Hugo to tirelessly advocate for the rights of patients with pacemakers and implantable defibrillators to gain electronic access to the data collected by their electronic devices. Difficulty obtaining all sorts of medical records has led many to join Hugo in the call of "Give us our damn data." 

Unable to get a satisfactory response from doctors to her multi-year digestive problems, Katie McCurdy (pictured nearby) applied her design skills to the construction of a visual timeline of her symptoms and medical history. Katie's hope was that this timeline would communicate much more and more effectively than medical records or her usually rushed oral description in a doctor's office, and she has had some success with it. Wouldn't it be nice if such visual timelines could be created by or for other patients?

Important input to such a timeline might come from Symple, an app developed by ePatient scholar Natasha Gajewski for tracking symptoms. Natasha built this app because of the difficulty she had tracking the symptoms of her rare autoimmune disease between doctor's office visits. Symple is now used by tens of thousands of patients around the world.

Sean Ahrens (pictured nearby) is among the ePatient scholars who have made valuable contributions to what is increasingly referred to as peer-to-peer healthcare. Because of his and others' similar health needs, Sean designed and developed Crohnology.com, a social health network for patients with Crohn's, colitis, and other inflammatory bowel conditions. Crohnology.com lets patients share and learn what treatments work for others, track their health, and meet others near them. As stated in a recent MIT Technology Review article:

"The site is at the vanguard of the growing 'e-patient' movement that is letting patients take control over their health decisions -- and behavior -- in ways that could fundamentally change the economics of health care."

Many ePatient scholars help patients connect in other ways. Tweetchats are particularly popular. Three-time cancer survivor Alicia Staley's weekly tweetchat for the breast cancer community (#BCSM) is perhaps the best known of these. Alicia started this tweetchat to combat the extreme isolation she experienced. (To get a better sense of the importance of such connecting, see Katie McCurdy's blog post, "On Speaking Up.")

ePatient scholars share their insights in multiple ways. The contributions of the most well-known ePatient, Dave deBronkart -- a.k.a. e-Patient Dave -- have included a TEDx talk and an ebook entitled, "Let Patients Help."

Many share their insights via blogs. Katie McCurdy's blog, referenced above, is filled with gems. See her recent analysis of the use of the term "patient engagement" for another great post. Carolyn Thomas's great blog includes a related post. Sarah Kucharski, founder of FMD (FirbroMuscular Dysplasia) Chat (and pictured nearby), is another excellent blog writer; her recent post on patient engagement provides important advice to designers of health apps.

Advice to designers is among the contributions I have made. As you might know from my interactions magazine blog posts alone, my writing and speaking on healthcare system and patient experience redesign have been focused, in part, on identifying what designers need to do in order to have maximum impact on that redesign. See, for example, "Are You Trying to Solve the Right Problem?," "What Designers Need to Know/Do to Help Transform Healthcare," "The Importance of the Social to Achieving the Personal," and the blog post you are now reading.

In short, there is much to learn from ePatient scholars, and you can learn more from and about most of those highlighted above as well as the other ePatient scholars attending Medicine X this year by accessing the 2013 ePatient ebook put together by the conference organizers. Use this ebook (and this blog post) as starting points to include the oft missing voice in the redesign of healthcare and the patient experience: that of the patient. Better yet: come meet us all at the conference September 27-29; we'll be happy to talk to you.

Are you trying to solve the right problem?

A version of this post appears as a blog post for interactions magazine.

I just looked through the variety of graphical depictions of the human-centered design process that I show to and discuss with my masters degree students during the first class of the semester. Sure enough, none of them includes a step often called reframing or a step that obviously includes reframing. Hmm... Does the design process followed by many fail to include that activity?

I think it does. Hence, I think many designers spend a lot of their time trying to solve the wrong problem.

This is not a good thing.

Fortunately, I've been increasingly running into references to the importance of reframing. At the recent Healthcare: Refactored conference, Aza Raskin argued that we are still solving the wrong problem in healthcare; a part of the solution: "reask the problem; reframe it." At the recent Healthcare Technology Forum Innovation conference, Gavin Newsom argued, "If you don't like the answer, ask a different question," and Dennis Boyle argued similarly but went further, "Ask whether you are solving the right problem; understand those whose problems you are trying to solve."

In a recent Fast Company Design post entitled, "How Reframing a Problem Unlocks Innovation," Tina Seelig describes different ways to accomplish reframing, including the way referenced by Dennis Boyle:

"At the Stanford d.school, students are taught how to empathize with very different types of people, so that they can design products and experiences that match their specific needs. When you empathize, you are, essentially, changing your frame of reference by shifting your perspective to that of the other person. Instead of looking at a problem from your own point of view, you look at it from the point of view of your user. For example, if you are designing anything, from a lunch box to a lunar landing module, you soon discover that different people have very diverse desires and requirements. Students are taught how to uncover these needs by observing, listening, and interviewing and then pulling their insights together to paint a detailed picture from each user's point of view."

In his new book, "Interviewing Users: How to Uncover Compelling Insights," Steve Portigal extends Tina's words:

"interviewing customers is tremendous for driving reframes, which are crucial shifts in perspective that flip an initial problem on its head. These new frameworks (which come from rigorous analysis and synthesis of your data) are critical. They can point the way to significant, previously unrealized possibilities for design and innovation. Even if innovation isn't your goal, these frames also help you understand where (and why) your solutions will likely fail and where they will hopefully succeed."

When trying to solve "wicked" problems, (transformational) innovation often needs to be your goal. Hence, reframing is essential, as argued by Hugh Dubberly and others in an interactions magazine article entitled, "Reframing Health to Embrace Design of Our Own Well-being." In a BayCHI presentation of some of this material, Rajiv Mehta and Hugh argued that failure to reframe is why most healthcare apps developed to date have had only a modest impact.

Who is responsible for design might partly explain the frequent failure to reframe. Aza Raskin (see earlier reference) says "the problem in healthcare is that design is now mostly in the hands of medical gurus." Don Norman has argued that "engineers and MBAs are fantastic at solving problems, but they aren't any good at making sure it is the right problem."

Regardless, if "reframing the question" is "one of the most important principles in design" (as Tim Brown argued recently), then we should do a particularly good job of teaching it and making sure it is done. This includes including it in our graphical descriptions of the human-centered design process.

I know of at least two such graphics that include it. It is present -- if not called out explicitly -- in "Define" in the following process taught by the Stanford d.school:

And it appears explicitly on a poster I stumbled across recently at an event held at the Institute for Creative Integration:

Clearly, I need to add these two depictions to the collection that I share with my students.

The Final Class of the Semester

This post has been published as a cowbird story.

Midway through the class I was teaching -- the final class of the semester, I announced that it was time to take a break. Unexpectedly, no one moved. One student eventually left the room for a couple of minutes, but for the most part, the students remained engaged with each other, talking about their masters degree projects, the masters program, and their future plans. Some of us selected more to munch on of the treats students brought to the class. Students had brought treats to most every class of the semester, but this day, the treats were extra special, including those pictured (shh! don't tell any university officials!).

My teaching of this group had been evaluated by a university observer a few weeks earlier. Recorded observations included: "Class feels 'together.' Everyone on the same page. Students seem genuinely interested in helping each other. Activity was very group oriented. Class almost feels like a family." Today, the family didn't want to separate.

A bit more than an hour later, I wrapped up the class and announced that we were done. Again, no one moved. Ten minutes passed; twenty minutes passed; thirty minutes passed. The interaction continued, and some expressed how greatly they had enjoyed meeting and working together throughout the semester. The starting time of the next class that was to meet in the same room crept closer, but no one in the room wanted this class to end.

Eventually, after additional assurances that we would all remain connected, the students began to disengage. The semester may have finally reached its end, but the bonds of this academic family might very well endure.

What designers need to know/do to help transform healthcare

A version of this post has been published as an interactions magazine blog post.

I've been immersing myself in all things focused in some way on dramatically changing the U.S. healthcare system and the patient experience. This has included attending lots of events. Last week, I attended the Health Technology Forum Innovation Conference. Two weeks ago, I attended the Second Annual Great Silicon Valley Oxford Union Debate focused on whether Silicon Valley innovation will solve the healthcare crisis. Near the end of March, I attended both a panel discussion about "Improving the Ethics and Practice of Medicine" and hxd (Healthcare Experience Design) 2013. ... (The list goes on and on.)

I've also been writing and speaking about this topic as well. Recent examples include the blog post I wrote for interactions in December entitled, "The Importance of the Social to Achieving the Personal" (in healthcare) and my presentation at hxd 2013 entitled, "Preventing Nightmare Patient Experiences Like Mine" (subtitled, "Avoiding 'Putting Lipstick on a Pig'").

As most agree, the U.S. healthcare system and patient experience are badly in need of disruptive innovation, a transformation, and/or a revolution. Hence, the subtitle of my hxd 2013 presentation implies that there are things (UX) designers need to be aware of or do (or not do) so that they can do more than only contribute to modest improvement of the status quo.

What are those things? The things I addressed in that presentation:

1. too many designers are too enthralled with technology and too focused on digital user interfaces to have a great impact on transforming healthcare;
    
2. human-centered design as often practiced is better suited for achieving incremental innovation instead of the disruptive innovation most needed -- Don Norman and Roberto Verganti have written a great essay about this;
    
3. design research too often falls short of revealing the nature and dynamics of the socio-cultural models at play that need to change;
    
4. design research too often focuses on common cases instead of the "edge" cases which can more identify or reveal emergent and needed innovation;
    
5. essential to solving the "wicked problem" of healthcare is reframing it, something not all designers do adequately -- Hugh Dubberly and others addressed this particularly well in an interactions magazine cover story;
    
6. designers need to get picky about the kinds of healthcare projects they work on.

(See the presentation for more on each item in the list.)

What would you add to this list? Is there anything in the list you question? Let's have a conversation. Please comment below or contact me via email at riander(at)well(dot)com.

And if you hear of any events you think I might be interested in attending...

On what holds UX back or propels UX forward in the workplace

A version of this post has been published as a blog post for interactions magazine.

Among the teaching that I've done: UX management courses and workshops via the University of California Extension, during conferences, and in companies. And a topic I have always addressed therein: what holds UX back and propels UX forward in the workplace -- or to put it another way, what increases and what decreases the influence of UX on the business.

Last month, Dan Rosenberg authored an interactions blog post in which he states that a root cause for a lack of UX leadership in business decisions relates to "how the typical types and methods of user research data we collect and communicate today have failed our most important leadership customer/partner/funding source, the corporate CEO." (Dan will be elaborating on this in the March+April 2013 issue of interactions.) In my courses and workshops, we identify all sorts of reasons UX isn't as influential as it might or should be, and we often do so in part via use of a simple "speedboat exercise" as I described in a UX Magazine article entitled, "What is Holding User Experience Back Where You Work?". (A variation of the exercise can be used to help identify what has propelled UX forward in workplaces.)

I've also often addressed this topic in my blog, sometimes referring to discussions that occurred during my management courses or during conference sessions. For example, course guest speaker John Armitage made the following point:

"There is only so much air in the room -- only so much budget, head-count, attention, and future potential in an organization. And people within the organization are struggling to acquire it -- struggling for power, influence, promotion, etc. whether because of ego or as a competitive move against threats of rivals. People will turn a blind eye to good ideas if they don't support their career and personal objectives. Hence, if user experience is perceived as a threat, and if they think they can stop it, they will, even if it hurts the company."

Guest speaker Jim Nieters addressed the role that the positioning of UX personnel in an organization plays:

"You want to work for an executive who buys-in to what you do. If that executive is in marketing, then that is where you should be positioned. If that executive is in engineering, then that is where you should be positioned. Specifically where you sit matters less than finding the executive who supports you the most. If the executive you work for has reservations about what you do and wants proof of its value, that is a sign that you might be working for the wrong person."

Organizational positioning and the type of user research conducted were two of the factors debated by a stellar panel of UX executives and managers I assembled for a CHI conference session entitled, "Moving User Experience into a Position of Corporate Influence: Whose Advice Really Works?".

We also addressed this topic in interactions articles published when I was the magazine's Co-Editor-in-Chief. For example, in "The Business of Customer Experience," Secil Watson described work done by her teams at Wells Fargo Bank:

"We championed customer experience broadly. We knew that product managers, engineers, and servicing staff were equally important partners in the success of each of our customer-experience efforts. Instead of owning and controlling the goal of creating positive customer experience, we shared our vision and our methods across the group. This was a grassroots effort that took a long time. We didn't do formal training across the group, nor did we mandate a new process. Instead, we created converts in every project we touched using our UCD methods. Having a flexible set of well-designed, easy-to-use UCD tools ... made the experience teams more credible and put us in the position of guiding the process of concept definition and design for our business partners."

Forming the centerpiece of their UCD toolkit: an extensive user research-based user task model. The influence of the use of these tools extended to project identification, project prioritization, business case development, and more.

I encourage managers to employ the speedboat exercise to prompt diagnosis and discussion in their own place of work. Also, peruse my blog posts and past issues of interactions for more on factors that impact the influence of UX. And give particular thought to the role user research might play; along these lines, look forward, with me, to what further Dan Rosenberg has to say in the March+April issue of interactions.