Engaging young patients: Boosting StudY enrollment for hospitalized kids

Problem:

A multi-centre study examining the effect of individualised yoga on general fatigue in young patients receiving intensive chemotherapy closed early due to poor accrual; only 125 of the targeted 210 patients were recruited over a span of seven years.

Challenge Framing

PROJECT CHALLENGE 1:

Obtaining health care practitioner (HCP) support so researchers could approach eligible patients during the recruitment window.

While the study had received Institutional Research Ethics Board Approval to be conducted on Bone Marrow Transplant and cancer wards, in practice nursing staff have the authority to allow research to approach eligible patients.

PROJECT CHALLENGE 2:

Parents or guardians concerns to allow their children to participate in a study, for fear that it could interfere with treatment or add unnecessary stress during an already difficult time.

Project goal:

How might we redesign and increase effectiveness of the patient engagement strategy for this study based on the knowledge of the critical role that nursing staff play in the practical implementation of research?

Company:

The Hospital for Sick Children

Role:

UX Researcher

Brief:

To develop an effortless research onboarding approach that integrates seamlessly with nurses' primary responsibility of patient care.

Design Process:

Research & Discovery 

To design the right solution, it must be grounded in real data. We were not able to ideate and gather insights into solutions for this project before it was abruptly stopped. In retrospect, I would propose taking a mixed methods (quantitative and qualitative) approach in order to better understand the environment dynamics. These could include the following aspects:

  • Interviews with key stakeholders on wards, including those involved in the delivery of patient care (i.e. nurses, physicians, occupational therapists, arts therapists, nutritionists, therapy clowns) and the patients

  • Observation - “shadow” or “ride along with various staff to observe in real time their day-to-day experience 

  • Co-created journey map with HCPs to understand current state of the service, steps in nurses “typical day”, steps in new patient onboarding to ward

  • Review existing research and data on successful methods employed to implement studies on acute pediatric patient wards

  • Measure patient volume on hospital wards

  • Numbers of staff on hospital wards

In similar vein were not able to measure impact because of the aforementioned reasons above, however below are some proposed impact measurements.

Metrics

Activities we can measure to determine success:

- Numbers of patients on study

- Numbers of patients approached

- HCP self-reported satisfaction