CENTER FOR DATA DRIVEN DISCOVERY IN BIOMEDICINE

UX Strategic Plan Development

Goal: Define the research journey and UX opportunities for childhood rare disease research

Summary: The Center for Data Driven Discovery in Biomedicine (D3b) is a rare childhood disease research center at Children’s Hospital of Philadelphia. D3b is on the leading edge of research discovery and treatment, providing resources and data to advance the care for debilitating childhood conditions.

Improving the experience for those using D3b’s suite of cloud-based tools and platforms is central to the D3b mission to discover breakthroughs for every child, every time, everywhere. I developed a strategic proposal to model to implement user experience (UX) strategies within D3b.

Key Opportunity

The D3b Center has created a powerful repository of childhood rare disease specimens and data - these resources are accessible through a suite of cloud-based analysis platforms that help researchers save precious research time and empower new discoveries on behalf of patients. Time is the resource that patients and their families simply do not have enough of.

Implementing UX strategies and best practices would enable the D3b Center to satisfy the unmet needs of the research, clinical and patient communities, allowing them to transform and reinvent the standard of care. UX and design thinking would allow D3b to improve their tools and more completely address the needs of a very diverse community of partners and collaborators.

  • Which activities should we pursue and which ones we should avoid or minimize?

  • Have we thought of all of the possible solutions? Have we considered all variables/scope?

  • How do we transform our solution into something great? What is the best experience for the end user?

  • At the end of the day, what is possible within the project constraints? What can we create with the resources we have?

“On average, every dollar invested in UX brings $100 in return. That’s an ROI of 9,900%.”
— Forbes

Introducing UX & Design Thinking Principles to D3b

UX and design thinking methodologies are employed by many successful organizations and are approaches that guide the design and implementation of resources including, but not limited to, websites, web apps, platforms, tools, processes and business strategy. However, these principles had not been fully adopted by the D3b Center, or more broadly across the childhood research/healthcare ecosystem.

My goal was to make sure the users of our platforms and tools had everything they needed to do their jobs more successfully and faster than ever before. To achieve this goal, I had to first define which UX activities could identify and deliver value for our partners, in spite of our very limited time and resources.

If our center wasn’t helping a researcher solve one of their fundamental research goals, then we’d need to reframe our activities to align with the priorities of the research community. Taking a user-centric perspective allowed me to see the D3b Center as a resource network tasked with connecting researchers to the tools and information they need to develop better treatments.

I applied design thinking models to dive deeper into four main questions. These questions helped me develop a comprehensive UX strategy and ensure that all of the proposed activities would help to deliver a specific benefit to our partner communities.

Using these questions as a framework, I was able to refine the value of UX activities at D3b by defining the phases within the research journey. Just like the scientists who use the scientific method to test possible solutions to a question or hypothesis, I approached the task of defining the UX opportunities at D3b through the lens of what we could learn from both internal and external sources, as well as how we could improve our user experience across our communications, operations, platform development, and other areas of emphasis.

Redefining the ‘Traditional’ Research Experience

As I outlined the core challenges facing the D3b Center, I reflected on how UX activities could support greater adoption and implementation of D3b resources throughout the research community. I noticed patterns in several scenarios which occurred at D3b, when often a project deliverable is rushed or condensed to meet an arbitrary deadline. Almost unilaterally, these projects required significant rework due to a lack of clarity or vision at the beginning of the project. In my estimation, additional research and modeling at the beginning of these project timelines would have significantly reduced rework and improved the overall quality to the user if UX was incorporated into the project planning.

Without first learning of and then considering the specific needs of each user, a tool or resource was often created that did not provide the greatest possible value to the user for the amount of time and effort expended. Adding user experience activities such as UX research, persona development, and strategic planning activities, as well as follow up reviews of analytics and metrics, would allow these activities and deliverables to have a greater overall impact.

The Journey of a Researcher

To understand which UX activities would have the greatest impact within the D3b Center, I first needed to define the broader aims of D3b related to the needs of the research community. I identified the phases of research and grouped the typical activities of a researcher within the appropriate categories.

After identifying the typical journey of a researcher, I wanted to define the best aspects of the D3b Center, as well as the areas of greatest opportunity for engaging with both external and internal stakeholders. Any opportunity to strengthen trust, build relationships and optimize experiences should be considered.

Additionally, reducing waste, improving efficiency and minimizing effort are also ways to improve the overall user experience. Since everything at D3b comes back to finding better treatments for patients, anything that can save or preserve time with their families is the highest priority.

UX Activities at D3b

I continued my proposal by outlining specific user experience activities which, if implemented at D3b, would improve transparency between D3b unit teams and strengthen relationships with members of D3b’s partner communities. I created a convergence map with areas of emphasis including strategy and planning, community feedback (stakeholders), industry best practices, and technology. Creating a convergence map allowed me to show the shared benefit or focus for activities across a number of unique operational domains. It also created a standard for comparison across other successful organizations and enabled me to clearly identify strengths, opportunities, weaknesses and threats within D3b’s competitive landscape.

Once I had identified points of intersection from the convergence map, I created a list of all the potential UX activities for the D3b Center and classified them into one of four operational domains. These domains could be identified at different points throughout the project planning cycle, beginning at the research and learning stage, then modeling and hypothesis forming, followed by the task execution and tracking, followed by review and analysis. At the convergence points of overlapping color, I was able to identify the specific activities that may have the most shared value for all of the teams within D3b.

Research & Learning

  • User surveys

  • Focus groups

  • Questionnaires

  • UX research

  • Data models & sourcing

Proposed D3b UX Activities

Models & Frameworks

  • Journey mapping

  • Empathy mapping

  • User personas

  • Prototyping/wireframing

  • Site map generation

  • Brand development

  • Design systems & component libraries

  • Convergence maps

  • Business/productivity models

Execution & Tracking

  • Guided feedback sessions

  • SEO/user analytics

  • Data analysis

  • Persona modeling

  • Design research

  • Task execution

  • Iterative feedback

  • UI development

  • Project management

Review & Analysis

  • Analytics review

  • Follow up surveys

  • Feedback collection

  • Design review

  • Documentation

  • Process improvement

  • Changes and updates

Planning & Execution

For any project or task to be successful, it must be within an acceptable scope of the organization, which includes budget and timeline approval. As part of my proposal submission, I outlined an implementation timeline for the creation of a new D3b Experience Design Team. Due to budget limitations, I would need to iterate and revisit this timeline several times to make adjustments based on leadership feedback. I was intentional to include opportunities for feedback and included members of cross-functional teams to fully consider their inputs, along with what was best for the Center in both the short and long term.

I provided recommendations for the staffing, compensation and training of the Experience Design Team, along with recommendations for additional educational opportunities, professional conferences to attend, and potential mentors in the field of user experience. Finally, I created a resource library with many of the UX- and design-thinking-focused resources that I used in my primary research for the proposal.

Presenting the Strategy

I created a PDF proposal to share with D3b leadership in depth, along with a companion presentation to more clearly introduce and emphasize the UX concepts and design thinking methodologies. I tailored the messaging and content to the interests of the D3b leadership team.

During the presentation of the proposal slides, I received a lot of specific feedback as to the challenges related to implementation of the UX plan in the D3b Center, but this indicated that I was able to clearly articulate the overall goals of the proposal, despite the opposition due to budget and staffing limitations.

Results & Conclusion

This proposal was excitedly received and reviewed by D3b leadership, but due to financial restraints, the proposal was paused based on the inability to fund the additional UX roles and/or existing workloads that could not be backfilled at the current time. However, the feedback received was generally very positive and optimistic about the future UX activities. Many of the activities have been already incorporated into communications workflows, including wireframing, empathy mapping, UX strategy and planning, web review and content development, and many others.

Despite the lack of a dedicated role, the UX footprint at D3b has expanded greatly as a result of this proposal and my other efforts to introduce and review opportunities for improving the user experience at every touchpoint.

CLIENT

Center for Data Driven Discovery in Biomedicine

ROLE

Senior Designer, Project Leader

TACTICS

  • UX strategy

  • UX research

  • Convergence mapping

  • Case study/curriculum development