A well-attended roomful of IAs, designers and strategists awaited us Saturday for the first World Information Architecture Day – I was in DC at Sapient’s Arlington auditorium, with Dan Brown (@brownarama) and great folks from the National Cancer Institute. Dan led off with a talk on collaborative design teams, based on his book Designing Together.
I closed the day with a new talk based on care-centered information design guidelines in Design for Care. One of the themes in the book is that information (content creation) must be developed as if it were a care practice. Caregivers and people in all health-seeking situations rely simple search access to internet and trusted institutional content – and because of the complexity of healthcare situations and the emotional concern of health, very little critical assessment may occur. The rapid-pace context of mobile interfaces compounds this issue. We cannot pretend to have solved it – in fact, it seems like we’re only now discovering the real complexity of health information as communicative care.
I retell the story from nurse Theresa Brown’s recent New York Times Opinionator, Lost in Clinical Translation. She sums up perfectly why we must curate, edit, and design better information resources for clinician use and patient communication. The patient’s quote drives home the point:
“When the medical team came to her room, they discussed her situation in detail: the problem itself, the necessary course of anti-coagulation treatment and the required blood tests that went with it. To me, just at the start of my nursing education, the explanations were clear and easy to follow, and I felt hopeful they would give my patient some comfort.
After the rounding team left, though, she turned a stricken face to me and deadpanned, “Well, that was clear as mud, wasn’t it?”
What know what we ought to do, and it will be expensive. Medical evidence translated for the range of clinical occupations and contexts of care is hard enough. Translating the translations so that health-seekers understand what they need to act on is going to be a significant challenge.
What can we do? There may be hundreds of touchpoints of care in a health-seeking experience. Issues ranging from caring for Dad (see the presentation) to conferring with specialists need different content, images, and evidence support. Real questions and concerns are answered today by dense clinical resources (even the well-structured cancer.gov) or the hyper-advertised and segmented WebMD. There are hundreds of clinical information sites, but most “patients” or health-seekers will stay with what they know and understand – whcih may be insufficient to inform.
Should designers embrace a duty of care? Perhaps, following the classic Mayeroff definition of care, do we pursue aims in our work that help people “grow and feel cared for.” Guidelines for helping to grow should include:
- First, do no harm. Due diligence to locate errors, ensure correct usage and meaning in context, and accuracy of measures and terms.
- Anticipate the information journey of health-seeking. People may have a months-long journey of treatment, testing and learning.
- Ensure health-seekers understand in their own language and terms, where possible (Unless you have a captured market, you do not have “users” – we can never know who our content readers really are).
- Start to design services around information touchpoints. Some touchpoints of care – Discovering about a condition, a diagnosis, a treatment – have physical service links as well.
- Design for multiple channels – websites, print media, patient handouts, apps. But don’t rely only on mobile apps – go responsive. Health seekers have bigger issues to deal with than finding your app – and they are not likely to be loyal to more than one or two major brands.
- Design responsive services for help seeking – use email responders and humanized (nurse-informed) call centers.
The health seeker is any person aware of his or her motivation to improve his or her health, whether sick or not. Health seeking is the natural pursuit of one’s appropriate balance of well-being, the continuous moving toward a person’s own centre and recognition of “normal” health. For some, normal is just not feeling any symptoms; for others, it may be achieving the physical performance of an Olympian. (Definition from Design for Care, FAQ) Either way, health seeking is a process view based on both behavior and one’s inner experience of “storing health,” it is not an identity.
There were several reasons for insinuating a new label. I needed a way to identify a person-centred view of care that embraces the full lifecycle of an individual and their circles of care. But we can’t say “person” all the time as a referent – and “patient” I like to reserve for the technical, clinical meaning only. And in a design book, I felt it was important to guide product-level designers away from “users” and user-centred.
The health-seeking impulse is also a systemic concept. Health seeking represents a motivation to restore balance, and is homeostatic in nature. I tend to disagree with the concept of “optimal” health, a concept which, from a person-centered and systems view, seems to overreach the human condition. An individual cannot ever reach or measure optimal, but we do recognize our own “normal.”
To optimize a function means to engineer its relationship to the environment to maximize its success in all known or preferred states. Optimizing ignores the real world complexity of many functions of a person, and presents health more as a engineering concept (where an optimal target can be defined and met as a benchmark). Research and experience shows people “seek normal,” even if normal for some is high performing and for others is merely comfortable. The reference should be with the person, not objective measures associated with an optimal state. That’s the system model chosen for the book.
A visual presentation of the health seeker emerges in the views of a person’s full lifecycle as in the book’s persona Elena’s journey from care-giver to recovering a new normal following a significant series of clinical encounters:
The health seeking journey situates the health seeker in a larger context where each stage of awareness results in (possibly, depending) a different encounter, a different outcome, and even a different circle of care. The journey shown here is not the sequence of supply-sided touchpoints of a service interaction, but the relationship of motivations to chosen touchpoints, leading to encounters and information resources. In this context, health seeking is rather like information seeking – an individual’s process for seeking resources and support to reach preferred outcomes.
Instances of health information seeking, as with the health concerns they reflect, are associated with a person’s experience of ill health. The health seeker is a person acting on the intention to pursue or sustain health, and health seeking is a purposeful activity that aims to restore or improve health. This new, neutral term gives context to the full range of experiences a person encounters in the pursuit of a homeostatic balance of relative good health.
When any concern arises—whether it’s sleeplessness, an unusual internal pain, or a chronic condition—our perspective changes, our information activity becomes focused and intentional, and in some cases our identity changes. A personal mood shifts from the indifference of everyday health to that of relieving a concern. Health seeking begins in earnest. People may undergo a significant change in identity—from a nonmedicalized self to that of a patient or even of a disease sufferer.
An Innovation Town Hall on Mental Wellness
November’s Design with Dialogue invites a wide range of community members to explore the landscape of campus and community mental wellness, the innovation of responsive care, and enhancing health service. With seasoned facilitators and special guests we take on several big questions, as well as those brought to the dialogue in the DwD circle.
- How can we move beyond the conventional views of mental health and learn from each other?
- Are there innovations in community and social health that might enhance awareness and improve mental wellbeing?
- What might we understand together to cultivate empathy and insight about the experience of emotional and mental health journeys?
The Health and Wellness Centre at OCAD University has pursued a positive, innovative course in engaging students and the campus in dialogues to understand experiences in mental health. Partnering with the HWC in this community-focused DwD, we join students, faculty, and community professionals in an exploration into the experience and struggles of mental health and the context of care and health services.
The Innovation Town Hall starts with several perspectives to learn about current, personal and critical issues in mental wellness and care. Moving from whole group to small group, context stories and health awareness journeys are co-created and shared among groups.
Outcomes of this dialogue will help inform the Health and Wellness Centre’s service and will be considered for potential designs for service enhancement. Please register on Eventbrite for this special session.
Peter Jones & Andrea Yip
Andrea Yip, MPH is the Coordinator of Mental Health Initiatives at OCAD U and Ryerson University and is working to co-design a collaborative mental health strategy between both schools. Working along the intersections of art, social design and health promotion, Andrea is coordinates community-led initiatives that have human-centered impact.
Andrea is an advisor to the Canadian Commission for UNESCO and the Wellspring Centre for Innovation. MentalHealthxDesign.com AndreaLYip.com Twitter: @andrealyip