Insight
Finding each other: Peer recognition as a clinical intervention in chronic illness
By Morgan Rose, chief science officer, Ema and Erlyn Macarayan, PhD, vice president, data science at PatientsLikeMe
May is Mental Health Awareness Month.
Most of the conversation this month treats depression and anxiety as standalone conditions, things people experience independently of their physical health.
For the patients we serve through the PLM platform, that framing leaves out something important.
Mental health in chronic illness functions as an overlay on a condition that does not end. It runs alongside the disease for as long as the disease lasts.
We have been analysing anonymised, aggregated conversational data from Ema, our agentic AI for patient support, and PLM users.
One pattern stands out across the dataset: what people are reaching for when they reach out.
The single most common behavior in the data, appearing in nearly 500 unique conversations, is the search for someone with the same diagnosis.
“Can you connect me with an MS group?” “Are there other people here with fibromyalgia?” “Does anyone in my city have what I have?” “I am looking for people like me.”
That request has a name in the research literature. It is peer support, and in the context of chronic illness, it functions as a mental health intervention.
The clinical case for peer recognition
The literature on peer support in chronic illness is well-developed.
Connection with others who share your diagnosis is associated with reduced depression severity, better treatment adherence, and a measurable drop in perceived isolation.
The mechanism behind those outcomes is recognition.
Someone else has lived inside the same symptom, navigated the same medication side effect, sat with the same diagnostic delay, and that recognition closes a specific gap that conventional therapy alone often cannot reach.
Therapists matter.
So do the people who know what an MS fatigue day actually feels like, what a fibro flare does to a person’s sense of self, what it is to be 34 and on a chemo regimen your friends cannot picture.
In clinical terms, that community is part of the care infrastructure for chronic illness, alongside medications, specialists, and labs.
PLM was built around this insight.
What Ema adds is a conversational layer that can route someone toward that community at the moment of need, before they have finished learning a platform.
“The PatientsLikeMe community has made living with MS manageable and in some bizarre way, even enjoyable sometimes because I’ve garnered these friendships and I am no longer afraid because all these other people are doing it with me.”
- PLM member living with MS
Why the burden is hard to address inside a clinical visit
There is a structural reason the mental health weight of chronic illness routinely goes undertreated. The visit is consumed by the physical condition.
The provider’s task list is long, the slot is short, and there is rarely a person in the room whose role is to ask how the patient is actually doing.
Some of that weight is also biological.
Depression in MS, for example, is roughly twice as common as in the general population, and is frequently undiagnosed because fatigue, cognitive change, and social withdrawal can be read as MS symptoms.
Similar overlap exists across cancer, autoimmune disease, and chronic pain.
Two systems run in parallel, shaped in part by the same underlying biology, yet routinely treated as separate.
That gap is where unguarded conversation tends to appear, and where the PLM data gets revealing.
The disclosure pattern
When mental health is mentioned in the PLM dataset, it rarely appears at the start of a conversation.
It surfaces sideways, after trust has been established by a clinical or logistical question.
One thread opens with questions about gabapentin and how PatientsLikeMe works.
A few exchanges later, the same user asks whether Ema has crisis resources. The conversation moves to feeling anxious, then depressed, then “I don’t know how I feel.”
Another thread spends several turns on MS management, medication questions, and which groups exist on PLM. Then the user writes, “My MS is making me feel overwhelmed and like everything is just too much. I’m not sure how to go on.”
Ema’s response in moments like that one matters.
She receives what was actually said, validates its weight, offers concrete steps for support, and connects the user back to the PLM community for the kind of isolation a clinical encounter cannot address.
The conversation pivoted because the user needed it to, and Ema followed.
That arc, the one that begins with a logistical question and ends in a disclosure about feeling unable to go on, is one of the clearest pictures we have of what the untreated chronic illness mental health burden looks like from the inside.
Crisis in the middle of an ordinary conversation
In 25 separate conversations in the PLM dataset, the mental health weight rose to the level of crisis. Users disclosed suicidal ideation directly.
One wrote, “I’m thinking of suicide.” Another asked what to do “if having a crisis and feeling suicidal.”
These conversations were happening on a patient platform, amid otherwise routine exchanges about a chronic condition.
The disclosures came in mid-thread, with no triage process to queue them.
Ema’s response was immediate and grounded. Hotline numbers, emergency services, an acknowledgment of the seriousness, and a reminder that the person is not alone.
The infrastructure to capture a moment like that at any hour, with no wait time, is something the conventional care system struggles to provide at scale. People are reaching for something in those moments.
Ema is built to be the thing they reach toward, and to hand them off to the human resources they need next.
What the data points toward
Pulling the patterns together, a coherent picture emerges.
People living with chronic illness carry a real and persistent mental health burden, and the burden tends to surface in the same conversations where they are managing medications, asking about treatment, and looking for others who share their diagnosis.
The most common request across the dataset is the request for community.
For PLM, that is the platform’s foundational thesis turning up in every dataset.
The platform was built on the premise that finding others with your condition is therapeutic. The conversation data confirms this, with patients explicitly asking for the connection.
For Ema, the implication is a design constraint.
We need to recognise when a question about gabapentin is an entry point into a question about feeling overwhelmed.
The route to peer recognition has to be as accessible as the route to clinical information.
And a moment of disclosure, whenever it arrives, has to land somewhere it can be received and responded to with care.
For Mental Health Awareness Month, the implication for chronic illness patients is direct.
Mental health in this population does not require a separate appointment that most patients will not make. It requires the people who already share the diagnosis to be part of the conversation, and it requires the platform to make that connection fast.
That is the work. It is what the data is asking us to build.
About Morgan Rose
Morgan Rose is chief science officer at Ema, an AI platform for patient health engagement.
Ema partners with health platforms and life sciences organisations to deliver clinically grounded, emotionally intelligent AI support where patients already are.
Learn more about Ema at emahealth.ai
A study is examining where delays occur in diagnosing endometriosis – a condition that can take seven to twelve years to diagnose.
Endometriosis affects an estimated 1.5 million women and people in the UK, but there is currently no consistent way of measuring where and why diagnostic delays happen.
The research aims to develop the first standardised framework for understanding the diagnostic journey and identifying points where interventions could improve care.
The international project involves researchers from the University of Sheffield, University of Liverpool, University of Oxford, Aarhus University in Denmark and the University of Edinburgh, alongside Endometriosis UK.
Dr Rebecca Mawson, NIHR clinical lecturer in primary care at the University of Sheffield, is part of the research team.
She said: “Our project asks: where exactly are people getting lost or let down on their journey to diagnosis, and how can we map those points in a systematic way to identify where interventions could make a real difference.”
The project is led by Dr Babu Karavadra, NIHR academic clinical fellow in general practice at the University of Liverpool, who has been awarded a World Endometriosis Society Early Career Investigator Award as lead principal investigator at the University of Liverpool.
Researchers will review existing evidence, gather experiences from people living with endometriosis and bring together an international panel to map the diagnostic pathway and agree common definitions for key points along the journey.
The work will focus particularly on people whose experiences are often missing from research, including Black women, people living in rural or deprived areas, LGBTQ+ communities and disabled people.
Primary care will also be central to the research because it is often where people first seek help with symptoms.
Mawson said: “Primary care needs to be at the heart of this work. Primary care is often where people first seek help with their symptoms, so it has a crucial role in understanding diagnostic delay.
“If we only look at what happens once someone reaches specialist gynaecology, we risk missing some of the barriers that shape the journey long before that point.”
Unlike cancer research, where internationally recognised standards exist for studying diagnostic delays, endometriosis research has been more fragmented, with studies measuring different parts of the diagnostic journey in different ways.
The researchers hope to create an ‘Endometriosis Diagnostic Pathway Framework’ to help identify where people are falling through the gaps and where healthcare could be improved.
They will also develop a ‘Snakes and Ladders’ style visual representation showing how systemic barriers, chance and individual experiences can influence whether someone reaches a diagnosis.
The project forms part of the PEARL network, Primary care Endometriosis and Adenomyosis Research and Learning, an international collaboration of primary care and community researchers and clinicians.
Mawson said: “Endometriosis diagnostic delay isn’t inevitable. If we can understand where and why people are experiencing barriers, we have a much better chance of designing interventions that actually make a difference.
“The scale of the problem demands that we look at the whole journey, listen to the people experiencing it and build an evidence base that can lead to real change.”
The framework could provide the foundations for future research, clinical guideline development, healthcare professional training and NHS service improvements, with potential applications to related conditions such as adenomyosis and chronic pelvic pain.
A drug targeting a key regulator in triple-negative breast cancer reduced tumour growth and cancer stem cell viability in laboratory models.
Triple-negative breast cancer is an aggressive subtype that disproportionately affects women under 40 and accounts for about 15 to 20 per cent of breast cancers.
The disease lacks receptors for oestrogen, progesterone and the HER2 protein, which are targeted by several cancer drugs, making it particularly difficult to treat.
Researchers from the National University of Singapore’s Yong Loo Lin School of Medicine investigated mechanisms that allow triple-negative breast cancer cells to spread and resist treatment.
They examined regulators of Wnt signalling, a pathway involved in processes including cell growth and movement, and identified a master regulator called DP103.
DP103 is a gene that controls a major biological process. The researchers found it creates a cycle in which cancer cells continue to grow and spread while resisting treatment and maintaining cancer stem cells linked to disease recurrence.
The team then investigated whether a targeted drug known as Supinoxin, or RX-5902, could block DP103 and its effects in triple-negative breast cancer.
Analysis of 21 samples, including patient tumour tissue, laboratory-grown breast cancer cells and organoids derived from local cancer patients, found that the drug reduced cancer stem cell viability by 40 to 60 per cent.
Tumour growth in laboratory-grown tumour models fell by about 50 per cent.
In laboratory models, treatment also reduced tumour size by around 90 per cent while largely sparing healthy cells.
It also extended survival, with half of the treated laboratory models reaching 70 days and beyond, compared with none in the untreated group.
DP103 had previously been identified as a biomarker for triple-negative breast cancer by a team led by Alan Prem Kumar, an assistant professor with the NUS Centre for Cancer Research and principal investigator for the new study.
RX-5902 is already being studied as a treatment for breast cancer, and Kumar said the findings could help identify patients who may be more likely to benefit.
“Our findings suggest that DP103 could potentially serve as a diagnostic biomarker to identify the patients most likely to benefit from RX-5902 treatment, paving the way for a more precise, personalised approach to treating triple-negative breast cancer,” he said.
“Instead of treating all patients the same, future clinical trials could focus on those whose tumours have high levels of DP103, where the therapy is expected to have the greatest impact,” said Kumar.
First author Cai Wanpei said RX-5902 could prevent beta-catenin, a protein whose mutation is associated with various cancers, from entering the nucleus of human cells and switching off genes that drive cancer growth and spread.
“This slows tumour progression and triggers apoptosis – the natural death of cancer cells,” said Cai, who was a PhD student at the NUS Centre for Cancer Research and NUS Medicine’s pharmacology department during the research.
Study co-author Celestial T. Yap said triple-negative breast cancer remains particularly difficult to treat because conventional treatments such as surgery, chemotherapy and immunotherapy may not work for all patients.
She said DP103 could represent a “biological vulnerability” in the disease.
“This discovery offers new insights that could support more precise patient selection and open the door to better targeted strategies for durable disease control and improved clinical outcomes,” said Yap, an associate professor with the NUS Centre for Cancer Research and NUS Medicine’s physiology department.
The researchers said abnormal Wnt signalling also drives several other cancers, meaning the findings could offer avenues for treating other aggressive cancers.
Their next steps include validating DP103 as a predictive biomarker in larger patient groups and further developing therapies targeting the regulator for clinical testing.
The team will also investigate combining RX-5902 with existing therapies to further improve treatment outcomes.
By Women’s HealthX
As healthcare organisations navigate tightening compliance mandates, evolving reimbursement frameworks, and shifting health economics, the single most critical asset for leadership is operational visibility into what their industry counterparts are executing right now.
Ahead of the Women’s HealthX marketplace in Boston this December, a cross-functional steering committee of health plans, hospital networks, biopharma innovators, and enterprise employers has launched the definitive 2026 U.S. Health Infrastructure Survey.
The objective of this brief, multi-state index is to bypass abstract market fluff and map out exactly how the country’s elite healthcare stakeholders are practically structuring their 2027 budgets, clinical protocols, and technology procurement guidelines.
Some of the questions we are asking:
- Health Plans & Payers “What is the biggest operational barrier to expanding women’s health coverage?”
- Health Systems & Providers “What is the biggest women’s health priority for health systems over the next 24 months?”
- Pharma & Life Sciences “What is the biggest commercial hurdle facing women’s health innovation?”
- Employers & Benefits Leaders “Which women’s health challenge creates the greatest workforce impact?”
By contributing just 60 seconds of your operational insight to the index, you will ensure your specific sector’s parameters are accurately represented.
In return for your participation, you will secure a priority, pre-ordered copy of the completed 30-page intelligence report when the final data drops this September!
See where your direct peer groups are drawing their line in the sand for the upcoming fiscal year.
Contribute 60 seconds and pre-order your national benchmark report
Women’s HealthX 2026 | From Rhetoric to Results
Encore Boston Harbor | December 3-4 2026
Bypass abstract market rhetoric to evaluate real-world health economics, regulatory compliance mandates, and care delivery systems.
Join the region’s foremost health plan medical directors, hospital COOs, biopharma innovators, and enterprise benefits buyers anchoring our 2026 tracks.
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