Two brothers founded PLM in 2004 as a direct response to their family’s experience with ALS. Their solution was an online, open, patient-facing community for patients with life-changing diseases. Eventually supporting a community of 700,000+ patients, which includes 2,900+ conditions, and collecting and organizing 40 M+ structured data points.
PatientLikeMe was in recovery mode following a failed $1B acquisition by iCx, a foreign company based in China. |A| A decision had to be made regarding the company's future. |B| The design and user research team was overburdened and discouraged. |C| There were disparate delivery teams and working models.
Goals:
To raise capital or donate the organized data, ensuring the privacy of patients and their communities is a priority.
My role:
Head of Design and acting-Head of Marketing. Create pitch decks and use cases that illustrate the value of PLM. Participate in virtual and in-person pitches with potential investors.
Observations:
Lack of consistent company artifacts that told a concise and coherent story.
Solutions:
Organize "pitch" materials and a list of top organizations that share similar ethics and goals.
Results:
PatientsLikeMe was acquired by United Health Group, the research and innovation branch of United Health. The group was later acquired by Optum Ventures.
Artifacts:
Pitch decks, PR, and both patient and media communications.
View media sources.
Goals:
Evaluate existing team members and identify core skills and potential gaps. Understand the needs of PLM's research activities.
My role:
Head of Design and acting-Head of Marketing.
Observations:
|A| Designers were working in isolation without the necessary support structures and team validation. |B| Patient research was happening in every organization within the company, with no cross-organization alignment and minimal sharing. |C| The majority of data collected from patients was anecdotal, and very little measurable data and insights.
Solutions:
|A| Restructure the design team into a 'Hub and Spoke' operating model. This allowed individuals to remain embedded within delivery teams but to rely heavily on the hub for support and ideation. |B-C| Create a Patient Insights Organization (PIO) led by a council. The council was company-wide, consisting of team leads from science research, user research, customer service, voice of the patients, and product data & analysis.
Results:
|A| The design team would self-organize design reviews and collaboratively support one another. A design system started to take shape. |B| The PIO team created research templates and a shared research schedule that provided visibility into departmental research needs, which in turn enabled cross-departmental collaboration when defining a study and communicating their findings. |D| There was an immediate decrease in siloed research, which resulted in less redundancy, cross-functional shared goals, and a streamlined process.
Artifacts:
Research templates, readout templates, shared research calendar, and research training material.
Goals:
Observe each team and designer more closely to better understand their current processes and expectations from design.
My role:
Head of Design and acting-Head of Marketing, and hands-on product designer.
Observations:
Each team deployed a customized development process, which made sense; however, each team had unique expectations from design team members and their role within the teams.
Solutions:
|A| Collaborate with leads to implement two design working models: one focused on product and delivery, and the other centered on ideation and design. |B| Set partner expectations that designers within teams would support delivery, but would also rely on the larger design team for support.
Results:
By setting clear expectations on the measure for success, team members became more comfortable in the roles supporting non-design partners. Teams had a shared set of expectations across projects, regardless of their goals.
Artifacts:
UCD design artifact including: patient journeys (storyboards and more), models, maps, archetypes, user flows, wireframes, screen comps, and prototypes.
Goals:
Identify opportunities where caregivers can impact PLM by contributing to the shared learning and care management of its communities, the members, and their health.
My role:
Head of Design and acting-Head of Marketing, Co-creation facilitator, and hands-on product designer.
Observations:
Common themes Include Confusion with Proxy identity and sign-up, a lack of a vibrant caregiver community for social support, caregivers seeking social support and practical advice but not finding it, and struggles with design and workflows.
Solutions:
|A| Executed a study of roughly 50 caregiver participants better to understand their challenges, needs, and goals. |B| Run a 3-day Design Sprint based on existing knowledge and the study insights. |C| Define and concept what the experience could be for caregivers on the PLM platform.
Results:
A multidisciplinary team of 6-9 enthusiastic people collaborated and delivered a concept for selling internally to the executive team.
Artifacts:
Caregiver Insights report, co-creation synthesis, and a concept of the caregiver experience.
