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UPA 2008 Workshop
Models of Healthcare Consumers’ User Experience

Workshop facilitators: Whitney Quesenbery and Christy Mylks
Workshop date: June 16, 2008, Baltimore, Maryland

What have we learned about healthcare information consumers and their usability needs? This workshop invites practitioners who have done user research with healthcare consumers to share - and compare - their results, including context, product and user goals, and user profiles, personas or other models. This workshop invites practitioners who have done user research with healthcare consumers to share what they have learned.

From the early days of the web, sites began to make medical and healthcare information available online. Information once restricted to medical professionals is now free for the reading, from advice on staying healthy to information about cancer clinical trials. As healthcare facilities move to electronic medical information systems, they can provide patient health records, detailed and personalized support information and even services like scheduling a routine appointment online. And Web 2.0 is only accelerating health networking, as patients connect to share information and support.

What have we learned about healthcare information consumers? Do they have special usability needs? Are their personas based on their demographics, or their disease? How do the patients’ journeys intersect with and inform their user experience? What do we see consistently, and what differs across projects and why?

This workshop is a chance to look across projects and see if there are any common themes to what different user researchers have learned about users and the user experience in different project contexts. Although this is a subject for discussion in medical communications conferences, we do not believe it has been done from a usability/UX perspective before. This may be little more than a chance for practitioners to share information, but it might also show areas of overlap or difference that could provide direction for further work.

We will start with each participant presenting a brief, structured summary of a model for understanding users, and the context in which this model was created. We will then break into small groups to discuss similar models in detail and identify areas of overlap and difference. After reports from the breakouts to the full group, we will then re-examine the models from the perspective of themes such as medical context, product type, or aspects of user demographics and behavior considered in the models. At the end of the day, we will work as a group to summarize what we have learned from this exchange of user research, and consider ways in which we can publish our results (meeting the requirement for dissemination of our results).

Participants in the workshop will be limited to people who can provide details of their research, so we can examine the context, product and user goals, and results of their research, in the form of user profiles, personas or other models. Each prospective participant will submit a short description of their background in this work and the work they would present. Participants will be selected for diversity of:

  • Healthcare context
  • Geographical, cultural or socio-economic diversity
  • Types of organizations (corporate, non-profit/advocacy, healthcare providers)

People accepted for the workshop will create a description of their user models, including a structured description of the context in which the models were created, and any visualizations or other materials to communicate the model.

Workshop Report

Participants: Beth Barnett, Suzanne Currie, Lisa Goldberg, Meryl Gross, Lyle Kantrovich, Yvonne Lavender, Elizabeth Randolph, Ginny Redish, Tamara Rose, Kathryn Summers

Questions addressed by this workshop included:

  • What have we learned about healthcare information consumers?
  • Do they have special usability needs? Are their personas based on their demographics, or their disease?
  • How does the patient journey intersect with and inform their user experience?
  • What do we see consistently, and what differs across projects and why?

Our final discussion asked, “What’s different about understanding users in healthcare vs. any other field?” Our answer was that the context itself makes the difference: No one chooses to be in this space. Healthcare has added emotional layers, complex relationships and issues around privacy, trust and urgency of the need for information.

The emotional layers permeate healthcare interactions:

First, it's a stressful situation.

  • Fear and uncertainty (it's about life and death)
  • Reactions are amplified
  • There's a lack of control
  • A medical crisis adds urgency
  • There may be a hunger for support: More than in an ecommerce or other “everyday” interactions

The healthcare domain adds issues:

  • The industry context includes: safety, liability, regulations, HIPPA
  • Privacy, and choices around it, are critical
  • The provider-patient relationship
    • May be adversarial or supportive
    • Includes power relationship based on knowledge Includes financial issues, especially for payers
  • One goal of the interaction may be change, but
    • Change happens outside of the web site
    • May require difficult (life-changing) actions
    • May be complicated by co-morbidity
  • A computer system – even a medical device – may not be able to solve the problem

What model or approach fits healthcare best?

  • Task-based: Patients have basic scenarios and basic tasks: What doctors did I see when? What were results? How can I print a summary of my activity?
  • Behavioral: Understand behavioral drivers, as well as demographics, personas and tasks
  • Process: Cycle of care, or stage in a cancer journey
  • Demographics: Health literacy, type of disease or health issue, literacy (computer and reading)

In thinking about people, questions to consider: What's salient?

  • When do these pieces of information come into play? (progressively layered personas)
  • Which things do we need to embody in a user and which things do we need to know at a product/site level? Implications of “learn” vs. “do” products.
  • If you’re going to create a set of core personas to use in many circumstances, what’s the core and what’s the project-specific/ancillary material?
  • Be sure the emotional layers are included in personas for healthcare consumers
  • Can you talk about personas without talking about scenarios?
  • Where do business goals come in?

The presentation version of this report is available on the UPA web site archives.