THE RESEARCH NEED
Emily’s Place The One is seeking a university faculty principal investigator to design and test a trauma-informed, low-burden method for capturing what happens to people when established pain care is interrupted, denied, or inadequate — and what it costs, year after year.
Community-engaged Pilot: Sentinel Reporting
Seeking a Faculty Principal Investigator for a REALtime Pain-Care Safety and Access Reporting Pilot: to measure the impact of disrupted paincare and undertreated pain.
Emerging from six years of service, we consider it imperative to measure the impact of disrupted pain care and undertreated pain on patients, caregivers, families, and thepublic.
Undertreated pain has consequences that are not always visible in medical charts, brief appointments, or routine intake forms. Relevant information is scattered across clinical records, pharmacy systems, insurers, emergency departments, and household caregiving — and those sources rarely show whether a treatment change was voluntary, why continuity failed, what happened afterward, or how long the consequences lasted.
The question
Can a co-designed, low-burden patient- and caregiver-report instrument feasibly and safely capture significant disruptions in established pain treatment, the duration of undertreated pain, and changes in function, care continuity, emergency-care use, caregiver burden, and selected household and public-cost indicators at baseline and follow-up?
A first study would be deliberately bounded: roughly 75–150 patient reports, follow-up at 30, 90, and 180 days, co-designed with compensated patient and caregiver partners. It would not estimate national prevalence, adjudicate individual care, or presume that every treatment change caused harm.
What we learned that shapes the method
A person living near the top of the pain scale is barely surviving, and is vulnerable emotionally as well as physically. Before any healing was mutually possible — before being asked anything at all — the rescue had to happen first. That is why this work begins with safety, and why stability must precede participation.
Who does what
Emily’s Place The One brings the originating question, lived-experience leadership, community relationships, and accessibility guidance. It does not assume IRB, funder, secure-data, clinical-service, or institutional-liability responsibilities. The university and faculty PI provide scientific leadership, IRB oversight, data protection, supervision, and independent analysis. No participant reporting would begin without IRB review, informed consent, privacy protections, and an approved distress and crisis protocol.
The immediate decision is not whether to launch a study. It is whether this focused question is researchable, aligned with your expertise, and suitable for a university-supervised partnership.