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Finding each other: Peer recognition as a clinical intervention in chronic illness

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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

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Peers call on UK government to review fertility and surrogacy laws

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Peers have called for law reform after two House of Lords debates on fertility treatment, surrogacy, embryo research and declining birthrates.

The first debate was put forward by crossbench peer Baroness Ruth Deech, who previously chaired the UK’s fertility regulator, the Human Fertilisation and Embryology Authority.

She discussed proposals from the HFEA to reform the Human Fertilisation and Embryology Act, along with proposals from the Scottish Law Commission and the Law Commission of England and Wales to reform the Surrogacy Arrangements Act.

She called for parliamentary scrutiny of possible changes to regulatory powers, consent rules, donor information and future scientific developments.

Baroness Deech said: “Parliament should plan by setting up a Select Committee to examine the HFEA’s proposals to expand regulatory powers, simplify consent rules, modernise donor information provisions and create a flexible framework for future scientific developments.”

Former fertility professionals were among those contributing to the debate.

Professor Lord Robert Winston, a Labour peer who founded the IVF service at Hammersmith Hospital in London, said: “Infertility is not a disease; it is actually a symptom of something wrong.”

Professor Baroness Geeta Nargund, a Labour peer, current HFEA member and former medical director of CREATE Fertility, disagreed.

She said: “Infertility is a disease, as stated by the World Health Organisation.”

Liberal Democrat peer Baroness Caroline Pidgeon highlighted regional differences in access to NHS-funded fertility treatment.

She cited figures from the Progress Educational Trust’s NHS Fertility Funding Tracker showing that only two of England’s 42 integrated care boards comply with the recently updated fertility guideline published by the National Institute for Health and Care Excellence.

Integrated care boards are local NHS organisations responsible for planning and funding healthcare services in their areas.

Baroness Pidgeon said many boards were offering only a partial IVF cycle rather than a full cycle as defined by NICE.

A full IVF cycle generally includes ovarian stimulation, egg collection and the transfer of all suitable fresh and frozen embryos created during treatment.

Crossbench peer Professor Baroness Clare Gerada, a former president of the Royal College of General Practitioners, said: “The proportion of NHS-funded IVF cycles has fallen to just under 30 per cent, the lowest level since 2008.”

She added that, in relation to IVF, “the NHS system has collapsed”.

Liberal Democrat peer Lord Monroe Palmer said it was “very ironic that it is difficult for many patients to access publicly funded fertility treatment in the very country where IVF was originally pioneered”.

Conservative peer Edward Howard, Earl of Effingham, also raised concerns about the NICE fertility guideline.

He said: “Access remains highly variable across England, because ICBs are not required to implement that guidance.”

He described the situation as “a clear gap between guidance and enforceable entitlement”.

Baroness Deech called for “automatic record sharing between clinics and the NHS central records system”.

Baroness Nargund supported this and linked the ambition to the Single Patient Record in the government’s Ten-Year Health Plan for England and the Health Bill currently before Parliament.

Baroness Pidgeon said such ambitions were at odds with the exceptional degree of medical secrecy that currently applies to IVF.

She also pointed to “a clear desire for the HFEA to be able to permit patients to give generic consent for the use of their embryos in research”.

Patients cannot currently give broad consent for unspecified future research involving their embryos.

Responding for the government, Labour peer Baroness Judith Blake said “immediate legislative reform” was not possible because “the legislative programme for this Parliamentary session is very full”.

Baroness Deech replied: “It might well take some years, but the Government really needs to set up that Select Committee and do the legislative scrutiny right now.”

A second debate on related issues followed immediately afterwards.

Baroness Nargund asked the government “what assessment they have made of the UK’s declining birthrates in an ageing population”.

She also said: “We still have a postcode lottery for IVF provision, with nearly 70 per cent of ICBs funding only one cycle of treatment.”

Responding for the government, Labour peer Lord Philip Wilson said: “The Government are committed to improving fair and equitable access to fertility services, recognising the significant emotional and health impacts of infertility.”

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Why proven women’s health innovations still can’t find a home

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By the Health Innovation Exchange

For more than a decade, femtech’s scale gap has been treated as a funding problem.  What if that diagnosis is incomplete?

Despite growing attention, women founders still receive just 2 per cent of global venture funding, and years of advocacy have failed to shift the needle.

This persistence is no longer just a concern; it signals a deeper structural failure.

This is not just a funding gap.  It is a system failure.

As Pradeep Kakkitill, founder and CEO of the Health Innovation Exchange (HIEx), argues, the sector continues to operate on a flawed assumption.

The belief that better support to founders alone will unlock scale overlooks the deeper structural constraints that determine whether the innovation is adopted at all.

Barriers That Go Beyond Capital

These insights are not theoretical. Global research reinforces that these challenges are not isolated, highlighting structural, financial and systemic barriers that shape how women-led and under-represented ventures access funding, markets and pathways to scale.

Importantly, these findings are not draw from research alone, but from the lived experiences of women and under-represented founders themselves.

Across HIEx-led interviews and focus group discussions conducted as part of the Reckitt Catalyst Programme, founders repeatedly described the same challenges:  fragmented financing, unclear adoption pathways, repeated cycles of proof, and systems that lacked clear routes from validation to procurement and scale.

These experiences suggest that the  barriers facing women-led innovation are not simply financial.  They are structural.

Many high-potential ventures are not failing because funding is absent.

They are failing because the systems that determine scale, including public procurement, regulation and financing, are not built to move proven solutions beyond pilots into widespread adoption.

This is not a founder problem. It is a system design failure.

Beneath these structural constraints sits a more persistent challenge.  Entrenched attitudes shaped by unconscious bias continue to influence decision making.

Across investment and public-sector systems, innovation led by women and underrepresented founders is still frequently perceived as higher risk.

These perceptions shape how opportunities are evaluated, increase the burden of proof placed on founders, and slow decision making.   In practice, this results in systematically higher barriers to both funding and adoption.

Systems Unable to Absorb Innovation

Dr. Abas Hassen, lead executive officer for health innovation and quality at Ethiopia’s Ministry of Health, underscores this point.

The primary constraints are not about innovation quality, but about the systems that determine adoption and scale, including procurement, regulation, financing and delivery.

He identifies three persistent challenges:  institutional resistance to change, “pilot purgatory” where solutions are repeatedly tested but not integrated into public systems, and a disconnect between what external funders support and what governments can sustain.

Ethiopia’s response reflects a broader shift.  Innovation is no longer treated as isolated pilots, but as a structured component of system design.

The country’s system-led innovation model combines regulatory pathways, prioritisation frameworks and structured testing environments to embed innovation directly within the health system.

The implication is clear.

Scaling innovation is not only about accelerating individual ventures alone.  It is about strengthening the systems that determine whether innovation is adopted at scale.

The Missing Middle:  From Pilot to Procurement

In many low- and middle-income countries, public systems remain the largest market for health and WASH solutions, accounting for the majority of service delivery and procurement.

Yet capital is deployed through models that do not reflect this reality, as scaling depends on public-sector adoption, long procurement cycles and regulatory integration rather than rapid returns.

This creates a misalignment within the financial ecosystem, where capital is structured for faster high returns, while impact depends on long-term system integration.

At its core, the challenge is the absence of clear adoption pathways.

Without structured routes from validation to procurement and system-wide use, even effective solutions struggle to move beyond pilots.

This is the “missing middle”, the gap between early validation and large-scale adoption.

The consequences of this “missing middle” are perhaps best illustrated by the founders trying to navigate it.

Temie Giwa-Tubosun, founder and CEO of LifeBank, describes her decade-old company as an “orphan” within existing financial structures, too commercial for impact investors and too impact driven for venture capital.

Businesses operating within health systems often fall between funding models that were not designed for them.

Thato Schermer, co-founder of Zoie Health, describes a similar challenge.

Even companies with strong revenue and clear demand struggle to secure funding at the right stage, as they are assessed through frameworks that do not reflect the healthcare markets.

Across interviews and focus group discussions, these patterns were consistent.

Founders described fragmented financing, unclear adoption pathways, and repeated cycles of proof, where they are asked to keep proving their solutions without a clear route to scale.

These are not isolated challenges.  They reflect how innovation is funded, evaluated and integrated across the system.

The barrier to scale is not a lack of viable solutions.  It is about the systems and models that are not designed to support them.

Reducing Risk Through System Design

From an HIEx perspective, a different approach is emerging, one that focuses not on fixing founders, but on designing how systems manage risk and adopt innovation.

Rather than avoiding risk, Ethiopia is working to manage it through structured processes.

The system is “risk-aware, not risk-averse.”  It uses innovation sandboxes, structured testing environments within public systems that allow new solutions to be evaluated under controlled conditions.

These mechanisms, generate decision-grade evidence while limiting system-wide exposure, creating clearer pathways from validation to adoption.

When innovations are tested within public systems, they gain institutional legitimacy.  This reduces perceived risk for both governments and investors and enables more confident decision making.

From Fragmentation to Coordination

Within this context, initiatives such as Reckitt Catalyst, a multi-partner platform supporting women-led health and WASH innovation to scale, play a critical bridging role.

By connecting entrepreneurs with governments, investors and technical partners, and aligning solutions with national priorities, the programme helps to create clearer pathways from pilot to procurement and scale.

But alignment alone is not enough.

As Pradeep Kakkattil notes, the climate movement offers a useful parallel.  Climate progress was not driven by evidence alone. It accelerated when investors, governments, and institutions began treating inaction as the greater risk.

Sustained pressure exposed the cost of doing nothing, redefined how risk was assessed and ultimately reshaped capital allocation and policy decisions.

Women’s health and WASH innovation is now at a similar inflection point.

Despite years of evidence and advocacy, outcomes such as women receiving a fraction of global funding persist.

This is not due to a lack of solutions. It is because the systems governing investment, adoption and scale have not been sufficiently challenged.

What is required is not incremental progress.

It is a shift in what the system tolerates – how risk is defined, how capital is allocated, and how accountability is enforced.

A System at an Inflection Point

The implications are clear.

Investors must move beyond rigid funding models and deploy capital aligned to how health systems scale.  Governments must build clearer pathways for testing, procurement and adoption.

Ecosystem actors must shift from supporting individual ventures, to enabling system-level integration.

The persistent funding gap is not a result of slow progress; it reflects a system operating exactly as designed. Incremental change will not shift outcomes.

What is required is a fundamental reset of how femtech is financed and scaled:  from passive investment to active market-shaping, where capital, policy, and procurement work together to create real pathways to adoption.

Until that shift happens, the sector will continue to produce innovation that the market is not structured to absorb.

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British women among angriest in Europe, health survey reveals

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British women are among the angriest in Europe, a global health survey has revealed.

More than 20 per cent of women in Britain said they had experienced feelings of rage for much of the previous day.

British women were also 47 per cent more likely to say they felt angry than a year earlier.

The findings were published in the Hologic Global Women’s Health Index, a yearly league table based on polling of more than 76,000 women and girls aged over 15 worldwide.

Anna O’Sullivan, co-founder of women’s health awareness group CensHERship and founder of the FutureFemHealth news platform, told the Daily Mail: “These figures reflect years of long waiting lists, delayed diagnoses and women’s health being treated as an afterthought.

“We’ve seen a significant increase in awareness and discussion about women’s health over the last few years, but access to care has not kept up with that.

“These findings should be a wake-up call that it’s time for long-term, sustainable investment to ensure women can access timely healthcare, trusted information and earlier diagnosis before conditions become more complex and costly to treat.”

The data suggested anger levels among British women have risen sharply.

Rates across the rest of Europe, however, remained broadly the same.

The survey, which involved more than 140 countries, found three in 10 UK women said they felt sadness, compared with the EU average of 25 per cent.

The data, collected in February 2024 and released this week, also showed that around four in 10 women in both the UK and EU felt worry.

A third of women in the UK reported being in pain, up 10 per cent on the previous year.

Three in 10 women also said they lived with chronic health problems, up seven per cent on the year before.

Chronic health problems are long-term conditions that may need ongoing care or management.

Health experts said women in the UK were increasingly frustrated by the gap between the NHS care they expected and the care they received.

The report took a snapshot of the national mood, with participants asked about the emotions they had experienced “during a lot of the day yesterday”.

The UK placed sixth among 37 European countries for anger.

The highest levels were recorded in Malta, where 26 per cent of women reported feelings of rage, followed by Greece at 25 per cent, the Czech Republic and Albania at 23 per cent, and Spain at 22 per cent.

Ireland ranked at 18 per cent, while Germany, France and Switzerland each reported 17 per cent.

Britain has also slipped in Hologic’s overall global rankings for women’s health.

The UK is now 48th, close to dropping out of the top third of countries worldwide, after ranking 40th out of 142 countries last year.

Taiwan ranked first, followed by Latvia, Japan, Vietnam and Poland. Singapore, Germany and Austria were also among the leading countries.

Tim Simpson, a senior manager at Hologic, said: “Women are telling us they want earlier diagnosis and faster access to care.

“Improving women’s health will take continued commitment from policymakers, the NHS, clinicians and industry working together to deliver the changes women are asking for.”

A separate Hologic survey carried out last month found that almost 70 per cent of women had faced delays seeking NHS care in the past five years.

Two in five said difficulties accessing healthcare had left them feeling frustrated or anxious.

The survey’s findings reinforced official figures showing that Britain has become more anxious since before the pandemic.

The Office for National Statistics said 22.5 per cent of UK adults reported “high anxiety yesterday” between July and September 2024, up from 20.4 per cent in the same period in 2019.

Among women, the figure was 26.3 per cent, compared with 18.5 per cent among men.

A Department of Health and Social Care spokesperson said: “It is unacceptable that the UK continues to lag behind other countries when it comes to women’s health.”

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