OUR RESEARCH NEED
Now seeking a university research partner and faculty principal investigator
We’re delighted to welcome Carolyn Concia, NP, as co-investigator. Together, we’re looking for a faculty principal investigator to lead a proposed REALtime Pain-Care Safety and Access Reporting Pilot.
Concept Summary Below
The real-time pilot: Sample Image
WELCOME TO OUR PROPOSED REALtime PIlot: Everything we want to measure started as something we lived through
Our research question and pilot concept didn’t begin in a conference room—they grew out of real lives and urgent need. It started with one woman’s search for rescue, and with witnessing, firsthand, the unmeasured costs and invisible consequences when systems fail.
Where the question began
For more than a decade, she lived with severe pain and a series of gaps in her care that no one person caused, but that no one could close. More than once, the gaps brought her close to losing hope altogether. She held on because people came: a caregiver who stayed, and a physician willing to care for patients others had turned away. Her story taught us something simple and urgent: hope depends on continuity.
The same question, from a clinician’s side
Carolyn Concia, NP, a geriatri and palliative care nurse practitioner in Oregon, came to this work after a friend’s son, a veteran struggling with sleep due to untreated pain, was turned away without relief and died by suicide. She first believed his experience was an outlier, then learned of others across the country facing the same barriers to accessing care.
She later launched her own study, Opioid Tapering in Older Adults with Chronic Pain, which she has been grateful for the opportunity to share at professional meetings and has presented it at the Oregon Geriatics Society Conference, with upcoming presentations at the International Association for the Study of Pain (IASP) and the Nurse Practioners of Oregon conferences. Her work reflects a deep commitment to supporting older adults living with chronic pain and to improving their functional quality of life while helping prevent the physical, psychological, and social decline that can occur when pain goes untreated.
A caregiver and a clinician, from different sides of the same gap, arrived at the same question: what happens to people when pain care is lost, and how can we measure it?
Our stories, “A Heartsong Published” and “The Rescue”, are not tales of completed projects or established solutions. Instead, they map the lived territory of gaps—spaces so wide patients and families fall through them, and moments when acts of care become the difference between survival and despair.
Right now, there is no tool or way to track what happens to people when pain care is suddenly cut off, or when life altering pain goes untreated or undertreated year after year—what it costs, what it does to their bodies, to their families, or what it takes from their lives. And no one’s asking the people closest to help build a way forward.
That’s why we’re here.
We’re not bringing a solution. We’re bringing the question—and lived evidence that what’s missing is too important to ignore.
Our Goal: To determine the feasibility of the first tool to measure what is actually happening on the ground when care is lost, or nowhere to be found — when hope is at risk.
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
- REALtime Pilot Executive Summary
- Concept Packet and Letter
- FDA/CDER Full Concept Summary
- FDA/CDER Full Concept Packet
- 2026 Public Testimony FDA-Reagan-UDALL Session
Reach Out To Us For Faculty and FDA/CDER Concept Packets, or A 30 Minute Exploratory
Conversation email: artrsenlove@gmail.com
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.
What we believe
- Every gap in care is a measurable event
- Patients and caregivers are experts in their own experience and should help shape what gets measured.
- Documenting the gap is itself an act of hope, it says this mattered.
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.
- Faculty Concept Summary
- Concept Packet and Letter
- FDA/CDER Full Concept Summary
- FDA/CDER Full Concept Packet
- Sample: Public Facing Instrument (see below)
Welcome. We’re so glad you found us.
Emily’s Place The One walks beside women sidelined by catastrophic illness or injury as they reclaim dignity, safety, and life, and find a new heartsong.
To the clinicians who stay with the hardest cases: thank you. You are often the reason someone holds on.
Our proposed REALtime pilot, shaped by patients and caregivers, asks a hopeful question: what helps people in severe pain stay safely connected to care through surgery and every change?
The answers will come from patients and clinicians together. Hope springs eternal. Please join us.