Patients are not users, and people are not (yet) patients until under a doctor’s care. Where does the user experience of health actually live?
Healthcare is systemic at every level of observation, and traditional user-centered design will tend to under-scope that system’s complexity. As with an emergency physician treating a cardiac arrest, but having to ignore multiple chronic diseases causing the attack, user-centered design is unsuited (by method) to fix what ails the system. Design teams will treat symptoms but fail to resolve root causes of systemic health and care problems.
We are faced with a double difficulty – of learning the language of healthcare and medicine and then to intervene. Designers must enlarge their methods toolbox and vocabularies to enable a more powerful range of options in systems and services design. Being able to carefully distance from the medical frame, designers can start making a difference by considering creative connections inaccessible within the patient and service model.
Designing for the Health Journey
Healthcare is characterized by multiple stakeholders (from consumers and patients to clinical staff, from administrators to insurers), multiple services (from primary care to academic institutional networks), and multiple sectors of services (from clinical practice to insurance and government).
The first design challenge is that we don’t find a definitive “user” in these complex systems of practice, in the institution. (If designing consumer websites or insurance products you can skip this part). If we design for one class of persona, we leave out another class. We cannot design for physicians, nurses, patients equally. Today’s major providers of electronic health records systems are a perfect example – by attempting to serve every constituent with a comprehensive database, they serve none well.
So who and what are we designing for? We are designing for situations that have few common workflows, with widely dispersed information, multiple and competing vendors, no integration, and weak systems protocols. This leaves us very limited ability to design at the service and systems level.
Leading with Experience
With a wide variety of stakeholders and problem owners, healthcare has no common voice, no conventional “user” base, and no system owners. Currently, design/research professionals are often isolated from each other by working in narrow bands of problem scope defined by a technology (e.g. electronic health records or device design), by media (online health publishing, social media, Health 2.0) or by an institution (electronic records, clinical informatics).
Rather than demonstrating leadership in the last decade, HCI and UX design have barely kept pace with the changes in the healthcare field at large. We have come late to the party, and are finding ourselves boxed-in by fixed infrastructures of large vendor services, EMRs, and fragmented IT systems. The dedicated design professionals in the field are doing great work, but where are human factors or experience designers actually positioned? Even in innovative institutions like Cleveland Clinic, the “patient experience” roles are not led by experience design professionals but by clinicians. They are the equivalent of the Customer Experience role which has become a staple of marketing. While at first it may seem that’s a good thing – we are all focused on better patient experience after all. However, my years of experience in product and service design informs my gut that the power of such a marketing-focused role can tend to overwhelm the more nuanced, interpretive, cognitive and affective responses from people served by healthcare services and informatics. Also, while patient focus is important, in designing for whole system impact, every constituent must be considered. The PX role can suffer the same blindness as UCD by over-focusing on one constituent.
The idea of the Chief Experience Officer was formulated by our field probably a decade ago – and being such a good idea, it may be championed by the same professionals that lead most of the decisions in healthcare, medically trained professional staff. Yes, it is fair to ask whether we are ready to lead in such roles. It is time we did. As conductor/author/educator Benjamin Zander calls for – we can lead “from any chair” – the chair we’re in today.
First take a reality test. There are few nationally-recognized design advisors or even industrial engineers leading in healthcare service. Publications are dominated by physicians and informatics specialists, who often focus work on tightly-scoped, feasible research agendas fitting the mandates of their institutions. Conferences are structured around medical or educational disciplines (societies and colleges), technology (Health 2.0), technology-oriented research (Medicine 2.0), and disease specialization.
Given the complexity of systemic issues, the compelling urgency of narrow-focus concerns, and the dedicated roles of stakeholders, individual designers and institutional teams are often unable to design solutions to address root causes or to scale applications across institutions or practice areas. Will Design for Care address or even hope to fix these concerns? (You’ll have to stay tuned …)
(An excerpt from Design for Care, in blog form)