Huddol

Goal

Huddol is a platform designed to meet the complex needs of informal caregivers. My role was to develop the functional specifications of the platform based on conversations with the founder and UX research.

Research Questions

  • What are the primary informational needs of informal caregivers?
  • What are their primary practical needs?
  • What are the needs of potential customers from such a platform?

Methodology

  1. Online research. While caregiving is not well understood, academic and industry research sheds light on the needs and opportunities available in for this growing segment of the population. I read widely to situate our work.
  2. Structured interviews with caregivers, professionals and potential customers. Based on my understanding, I developed interview protocols. I conducted formal interviews with caregivers, nurses and social workers. And, we held more informal discussions with pharmaceutical companies and service providers.
  3. A caregiver survey. Building upon the interviews, I conducted a survey of a broader group of caregivers which included open and closed-ended questions.
  4. Prototype testing. After synthesizing our findings, I developed and tested low fidelity prototypes of our recommendation system. I conducted user tests based on a cognitive walkthrough approach to iterate upon the designs.

Results

In open-ended questions, respondents expressed disorientation and discussed a need to simplify their search for services. One respondent stated this clearly:

An integrated approach to resources — caregivers do not have time to do all the searching and calling of caregiving organizations, touring of care homes, etc. The actual administration of all this is a full-time job in itself that goes unrecognized.

Rather than interest in talking to peers, respondents revealed a strong desire to connect with experts and find educational programs. See chart below.

Although we had been thinking about the site as primarily a peer network, this research shifted our thinking. It suggested the need to have experts tightly integrated into the platform. Access to experts is now a core part of the business model.

Interviews with companies and government agencies pointed to a lack of data in evaluating treatment options. Research partners revealed the sorts of data they would like to access through the site, allowing us to identify measures worth tracking.

Prototype testing informed the phrasing and presentation of information.

Prototype Survey

Outcomes

Based on our interviews and survey findings, we refocused the platform’s design and business model and built a platform.

I drafted user flows and functional specs. Together with the founder and UI designer, I detailed how the system should behave.

Huddol is a smart, social network providing personalized recommendations that connect users to experts, peers, and “networks of care,” while aggregating data to inform policy and research.

 

Additional Work: The Privacy Policy

Privacy issues are central to healthcare. Building on my academic research in this area, I drafted the site’s privacy policy, user agreement, and data model to be vetted and finalized by a privacy expert. The platform begins beta testing in February 2017.

 

Kanker.NL

Context

Kanker.nl is a novel platform for Dutch cancer patients to collaboratively access medical information and discuss experiences. I met the team as they began setting up the project and worked with them for three years. My role changed as the product developed. Throughout, I managed junior researchers and worked closely with the product owner and the UI and graphic designers.

Background Research: Interviews, Participatory Design and Surveys 

In the early stages of product development, I was tasked with conducting the design research needed to define the site’s functionality. We began by sketching ideas and conducting interviews. I oversaw the work of two junior researchers and trained the UI designer in research methods.

In order to design with our users, rather than for them, we ran a series of participatory design sessions. In them, I drew from a variety of methods to engage users. We sketched together, did card sorts, and brainstormed new ideas for the site.

KNL CardSortClose

  • To gather feedback from a larger group of users, I developed a survey for cancer patients that prioritized goals for the platform.

Design Phase: Personas, Prototyping

Based on interviews and surveys, I developed a set of personas used to validate our design choices. See samples here.

In collaboration with the UI designer, we developed a clickable prototype for the proposed system. Testing with users helped avoid usability issues in the live product.

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Usability Testing and Analytics

To improve the live product, we carried out regular user tests. Once the product was live, I defined and tracked metrics. We used Site Catalyst to track usage. Based on observed patterns, we improved the site.

To learn more about our design process see our paper, Meeting cancer patient need: Designing a patient platform, presented at CHI.

The Cobra Museum

Context

The mission of the Cobra Museum is to both educate the public on the legacy of the international Cobra Movement and further the intellectual heritage of the Movement’s artists. The Cobra is committed to innovation in their curatorial practice.

In collaboration with Claudio Martella, this project explored the use of data on the movements, attitudes, and experiences of museum visitors to inform curatorial practice. We received funding to support research assistants. I acted as the design researcher on the project and trained junior researchers.

Our Process

In order to prototype a tool for curators, we carried out a series of studies. We began with interviews. I defined the protocol and together we talked to curators, marketing professionals, and exhibition designers to assess needs. Concurrently, Claudio and a research assistant instrumented the exhibition and invited users to wear a low-cost sensor and complete a survey during the visit. Based on the data we developed a set of data visualizations of visitor behavior within an exhibition and tested these visual “prototypes” with museum staff to assess their utility and inform design.

Prototype testing revealed an increased awareness of how the exhibition space functions, and what types of pieces attract and maintain visitors attention. It also revealed distinct types of visitor behavior in the exhibition hall.

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This project was funding by the Network Institute and was featured in the Volkskrant, a major Dutch daily newspaper.

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Sample visualizations

PatientsLikeMe

Context

PatientsLikeMe is is a startup that aggregates the experiences of patients to improve individual health outcomes and advance medical research. Users enter detailed information about their health day-to-day and share experiences on forums.

When I arrived, the company consisted of 6 people and served a community of ALS patients. There was no history of UX research or design. There were few metrics to evaluate the operation of the site. I was there to incorporate design thinking into product development and present the platform to researchers and designers. Ten years after launch, PatientsLikeMe has over 400,000 members and serves people with more than 2,500 conditions.

UX Research: Interviews, Mockups and Participatory Design

In the early days of the platform, we grew through adding disease specific communities one at a time. I conducted the contextual interviews used to inform that design process. I worked with the graphic designer to generate site mockups (patient profiles, reports, visualizations) that described the concerns of the particular patient group.

Expanding and Improving the Site: Defining Functionality, User Testing

Based on findings from contextual interviews and participatory design sessions, I made recommendations for new functionality on the site (e.g. mood trackers, upgrades to treatment reports) that are now core elements of the platform. And, to ensure the usability of new elements of the site, I conducted user tests.

Representing the Platform

During my time at PatientsLikeMe, I published findings on our work and presented the platform widely to different audiences, both in medicine and design, including an Ars Electronica Award of Distinction in 2008 and the paper of the year at Medicine 2.0 in 2009. Here is one of my final presentations on PatientsLikeMe made in Amsterdam.

The interactive treatment report was one outcome of our studies.

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