Information Empathy at the Touchpoints of Care

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.

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