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Co-Design Workshop for Parkinson’s Research

How may we increase patient recruitment and retention for the Cincinnati Cohort Biomarker Program (CCBP) by creating an informational hub?

A group of medical research scientists at the UC Gardner Neuroscience Institute needed more patients with neurodegenerative diseases to participation in their research study.

 

As the UX Researcher in a team of 3, I developed a co-design workshop backed to determine the best strategy to incentivize participation in the study.

SKILLS

Design Research
Participatory Design
Research Synthesis
Design System

INDUSTRY

Healthcare Research

TIMELINE

3 Months

TOOLS

MS Excel
Miro
Adobe Illustrator
Paper + Pen

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THE CHALLENGE

Lack of information & community support services makes patients apprehensive to join a medical research study.

With the Cincinnati Cohort Biomarker Program (CCBP) vision to realize the potential of precision medicine for patients living with neurodegenerative diseases, the team is on a mission to recruit 6000 participants to understand how individuals are affected by them.

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The recruitment methods currently rely on word-of-mouth and recommendations given to patients by their doctors, the actual footfall of which is a fraction of the target number.

PROCESS OVERVIEW

A mission that could change lives

4000

Patients

1000

Healthy Control Group

120

Months

THE APPROACH

Engaging in co-design to inform a sustainable recruitment strategy

Through our initial research, we determined that our point of intervention must solve for patient and caregiver needs throughout the process.

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We spent weeks looking through previous research and online forum/groups for neurodegenerative disease caregiver support, coding data into relevant themes that could inform our next steps.

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The field study sessions were where we could be silent observes in the patient sessions, making notes of the touch-points in their user journey and infer opportunity areas.

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The findings defined our research questions, objectives, and brainstorming potential responses, including the idea of constructing a "hope package".

Secondary Research

Research began with readings of about 82 articles based on which, the initial themes noted included:

  • Implementation of wearable technology

  • Fostering connections with the local community

  • Creating participation incentives

  • The role of caregivers and support groups in the lives of the patients.

INITIAL POINTS OF INQUIRY

Primary Research

Primary research involved meeting with different stakeholders involved with the CCBP study to gain a deeper understanding of the recruitment and participation processes that are involved. These meetings involved the following:

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  • Chris: Fly-on-the-wall patient appointment observation

  • Urvi: Patient session observation + Informal interview

  • Jessica: Observing researchers and internal protocols

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KEY FINDINGS

  • Patient experiences frustration in degrading physical state

  • Appreciative of social connections and experiences

  • Social activity and creative expression/art is important

  • Misses the social interactions he used to have pre-diagnosis

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Arising questions:

  1. How can the CCBP create support systems and facilitate social interactions that benefit the patients?

  2. How can existing patients help network and bring in referrals?

PATIENT OBSERVATION NOTES

TEAM FINDINGS

Stakeholder Interviews

Interviews consisted of hour long sessions where the team had unscripted conversations with the following stakeholders:

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  1. A personal trainer with experience conducting physical fitness classes for Parkinson's patients.

  2. An owner of a non-profit organization working towards support efforts for patients with neurodegenerative diseases

  3. A Parkinson's patient who has been part of the CCBP study in the past, but is not anymore
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"Many patients who live in surrounding areas aren't comfortable driving into the city."

"If the CCBP had testing centres at churches in different parts of the city once a month, they would reach more people."

"We haven't been told about any family counseling."

"I would like more psychological support."

"I don't see any reason not to help find a cure for others."

"I don't think all doctors understand the reason for CCBP themselves."

"I'd like to know what's happening with the study even when I'm not being asked to go in."

"Lack of communication about the disease and what we're experiencing can feel very isolating."

QUOTES FROM INTERVIEWS

The findings defined our research questions, objectives, and brainstorming potential responses, including the idea of constructing a "hope package"

Research Synthesis

COLOR KEY

OUTREACH

OUTREACH

RETENTION

PATIENT FLOW MODEL

AFFINITY MAPPING

USER JOURNEY MAP

EMPATHY MAPPING

THE SOLUTION

Participatory design workshop to embody stakeholder decisions

Based on the research insights and taking inspiration from case studies of participatory design involving card sorting, we designed a gameplay that helps participants empathize with different stakeholders to participate in the user journey (We made scientists play with post-its!)

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Here is what we designed and how it works:

ROLE CARDS

NEED CARDS

WORKSHOP ASSETS

WORKSHEET

SITUATION SHEET

Conducting the co-design workshop. (Making medical researchers lay with post-its!)

STEP I

Choosing a Role

Participants pick a ROLE CARD at random, each of which comes with a description of the role of a particular stakeholder. Participants must empathize with the chosen role for the entirety of the game by putting themselves in a situation chosen from or inspired by the SITUATION SHEET.

 

Ex of Role: "Adult Caregiver" (Direct Stakeholder)

Ex of Description: Someone who lives in their parent's home and is the primary caregiver for one/both parents who are patients.

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STEP II

Mapping Needs

Collect and use NEED CARDS to characterize information that the participants' particular stakeholders would find useful in a potential newsletter. Through principles of card sorting, participants could choose from existing cards, or write down ideas on given empty cards.

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Ex. of Need Cards: "It Would Be Good To Know About Speech training programs to re-develop communication abilities."

STEP III

Synthesizing a Story

Use worksheets to map out the prioritization of content cards, and why the stakeholder would need the content that is picked. Participants must create a storyline for their characters and prepare to present it to the rest of the group.

STEP IV

Presentation and Discussion

Participants present their ideas to a group. The other members of the group must put down their ideas or feedback onto post-it notes that are shared with the presenter at the end.

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Positive feedback and constructive results contributed to the refinement of our proposal.

We were limited to only 3 rounds of conducting the workshop with CCBP participants, and the tasks involved imagination for the most part and maintain their adopted persona throughout the game.

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The idea of creating a “hope package” was affirmed and encouraged, provided the result would be a tangible artefact, since our target audience were most often senior citizens who still prefer to read the newspaper over news apps.

IDEATION

SKETCHES

DIGITAL PROTOTYPE I

PROTOTYPES

DIGITAL PROTOTYPE II

THE IMPACT

Strategy-driven plan for a quarterly newsletter that elderly patients can engage with

Based on the prototype work, we developed a template of a newsletter that could be worked on by a student from the University hired on co-op at every trimester rotation.

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To take it forward, I iterated on a design system for The Report Labs, a community initiative system and an information hub, for patients enrolled in the CCBP and their families to foster communication and community support while being participants in the study.

PROTOTYPES

The Report Labs can be run by a group of full-time and part-time workers with the CCBP, including researcher publishing their work, graphic designers, and UC student co-ops. The proposed templates can be a blueprint to maintain visual consistency, however the content and layout will change based on the information available every quarter.

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Publishable material includes relevant research updates from UC and beyond, featured patient/caregiver stories, local events or clubs, featuring/advertising medical practitioners and clinics, group classes and the publishing team.

PROTOTYPES

IMMEDIATE IMPLEMENTATION PLAN

We recommended that the CCBP assign a co-op student to oversee the newsletter creation every semester, who will carry out the following steps.

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  1. Collaborate with Dawn to conduct interviews with:

    • Doctors

    • Consenting Patients 

    • Consenting caregivers and families 

  2. Develop a comprehensive description of the study and recent developments in the field to be featured in the quarterly newsletter.

  3. Reach out to local community groups and event organizers for features or sponsorship of events.

  4. Utilize a pre-designed Canva template for the newsletter creation.

  5. Manage and re-organize a mailing list for effective distribution.

References Afshari, M., Yang, A., & Bega, D. (2017). Motivators and barriers to exercise in Parkinson’s disease. Journal of Parkinson's disease, 7(4), 703-711. Haridy, R. (2022, September 13). Hormone secreted when exercising halts Parkinson's decline in mice. New Atlas. https://newatlas.com/science/hormone-exercise-irisin-parkinsons-degeneration-mice/ Lwi, S. J. et al., (2017). Poor caregiver mental health predicts mortality of patients with neurodegenerative disease. Proceedings of the National Academy of Sciences of the United States of America, 114(28), 7319–7324. https://www.jstor.org/stable/26486465 Espay, A. J. et al., (2018). Current concepts in diagnosis and treatment of functional neurological disorders. JAMA Neurology, 75(9), 1132-1141. Pan, S., Stutzbach, J., Reichwein, S., Lee, B. K., & Dahodwala, N. (2014). Knowledge and attitudes about Parkinson’s disease among a diverse group of older adults. Journal of Cross-Cultural Gerontology, 29(3), 339-352. Singh, R. L. et al. (2020). Considering health care needs in a rural Parkinson disease community. Progress in Community Health Partnerships: Research, Education, and Action, 14(1), 15-28. Shimbo, T. et al. (2004). Association between patient education and health-related quality of life in patients with Parkinson's disease. Quality of Life Research, 13(1), 81-89. Spencer, C. M., Haub, M., & Rockers, M. (2020). Living with Parkinson's disease: The benefits of community programming. Complementary Therapies in Clinical Practice, 41, 101241. Bailey, M., Anderson, S., & Hall, D. A. (2020). Parkinson’s disease in African Americans: A review of the current literature. Journal of Parkinson's Disease, 10(3), 831-841. Boulos, M. N. K. et al. (2015). LiveWell–promoting healthy living and wellbeing for Parkinson patients through social network and ICT training: Lessons learnt and best practices. International Journal of Healthcare Information Systems and Informatics (IJHISI), 10(3), 24-41. Burks, J. (2022, September 9). Steady Strides Volunteers. Parkinson Support & Wellness. http://parkinsoncincinnati.org/blog-feed/steady-strides-volunteers Hatano, T. et al. (2009). Unmet needs of patients with Parkinson's disease: Interview survey of patients and caregivers. Journal of International Medical Research, 37(3), 717-726. National Institute of Neurological Disorders and Stroke. (n.d.). Parkinson's Disease: Challenges, Progress, and Promise. Retrieved Oct 11, 2022 from https://www.ninds.nih.gov/health-information/patient-caregiver-education/hope-through-research/parkinsons-disease/parkinsons-disease-challenges-progress-and-promise Parkinson Support & Wellness. (n.d.). Exercise & Activity Programs. Retrieved October 11, 2022, from http://parkinsoncincinnati.org/exercise Sproesser, E. et al. (2010). The effect of psychotherapy in patients with PD: A controlled study. Parkinsonism & related disorders, 16(4), 298-300.

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