*Guest Article by Marcello Patané, Founder and Principal, Common Synapse. If you would like to submit an article or blog post please email [email protected].
The standard account of optic neuritis runs in three steps: vision deteriorates, the acute episode passes, and sight recovers. For a biotech developing a therapy, the word recovery needs a definition. Does it mean that vision improved on a clinical measure, or that someone can rely on their vision again in ordinary life? Patients often describe more than the clinical measures show.
Patients describe the difference in their own words.
"my ON has been constant since September 2023… it's still like looking through a windshield with a layer of ice on it." (patient, unspecified demyelinating optic neuritis, Reddit r/MultipleSclerosis)
"My eye doctor says I have perfect vision but that my brain is having trouble processing what it is seeing." (patient, MS-related optic neuritis, Reddit r/MultipleSclerosis)
Common Synapse explored that gap in a project for Pheno Therapeutics. Pheno is developing treatments for multiple sclerosis and uses optic neuritis as a clinical model of the disease. We analysed more than 700 publicly available patient narratives about optic neuritis, drawn from online conversations across several discussion platforms, from Reddit to open patient forums and Facebook groups. In that material, approximately half described residual visual problems and roughly one-third described a non-linear recovery. While these are shares of a self-selected online sample, and therefore no estimate of prevalence, they do show, unprompted and in patients' own words, how much a neat recovered-or-not-recovered account of the condition leaves out. [1]
What the recovery label can conceal
A clinical description can compress a complicated course into a single label. A person may improve and still describe limitations, uncertainty or changes over time. Public conversations capture this because people often explain what happened before and after an episode, what still troubles them, and what they mean when they say they are better. The meaning of recovery sits in that surrounding story.
Work backwards from the decision
For an early biotech, the place to start is the assumption the team is about to rely on. If the team believes most patients recover fully, ask what that belief rests on and whether patients describe the same thing. If the team is considering a measure of visual function, ask whether it captures the changes patients say matter to them. If a claim about unmet need is going into an investor deck, a partner pitch or a regulatory briefing, ask what evidence supports the wording.
The second question is one patients raise themselves.
"I never feel like clinicians really understand how much our vision is compromised, even though we might do pretty well on eye exams on high contrast screens in pitch dark rooms. I've mentioned it's not a test of everyday vision." (patient, unspecified demyelinating optic neuritis, Reddit r/MultipleSclerosis)
What a single account can reveal
Take one post from the dataset. The patient described optic neuritis in both eyes as a child, with full recovery, then a new episode fourteen years later, a 36-hour wait for IV steroids and a rapid loss of vision. They wrote:
"Vision improved to 90%, I have trouble reading small print, it's been one month since I came out of the hospital. Eye pain sometimes, headaches, easy eye strain/ can't look at phone/computer for more than 30 min without fatigue." (patient, MOGAD-related optic neuritis, Reddit r/MOGAD)
Coded, that one post yields six signals: the condition and the long gap between episodes; symptoms in the patient's own words, such as a "blurry spot" and pain on eye movement; limits on reading and screen use; how severe the episode became and how long treatment took; the route through MRI, lumbar puncture, steroids and plasma exchange to a partial recovery; and open questions about long-term prevention and about a scan that showed "pretty pale" optic nerves in someone who reports "20/20 vision". Coding those elements consistently and keeping each claim linked to its source makes it possible to inspect the evidence behind every quotation. Regulators recognise the value of this material: the US Food and Drug Administration's patient-focused drug development guidance discusses social media as a source of patient experience data. [2]
From patient language to decisions
For Pheno, the work turned a clinical shorthand into a source-traceable evidence base for its work in MS. Every claim in its fundraising narrative can be traced back to patient verbatims, and a searchable library of the coded narratives lets the team pull supporting quotes during investor conversations. With nearly half of the sample anchored to multiple sclerosis, the findings connect directly to MS, the disease Pheno ultimately aims to treat. [1]
The evidence now shapes fundraising narratives, informs endpoint selection in its MS programme and guides how communication materials for doctors and patients are framed. It also gave the team a sharper map of the questions to take into patient interviews and discussions with clinical experts: what persists after the acute episode, what course patients describe, and whether the team's account of recovery accommodates those experiences.
"The narrative has been that most patients recover. The patient data told a different story. That gap is exactly where our therapy sits." (Fraser Murray, CEO, Pheno Therapeutics) [1]
A question for any therapeutic area
Optic neuritis has its own clinical and patient realities, and the same question applies in every therapeutic area: when a team says that someone has recovered, responded or improved, what evidence supports that claim? Patient narratives can bring the answer to light early enough for the team to investigate it.
About the author
Marcello Patané is Founder and Principal of Common Synapse, a Basel-based consultancy that helps pre-market biotech teams test assumptions about patient experience using structured analysis of public online narratives. He has more than 18 years of experience in global digital intelligence and insights, including roles at Biogen and Novartis. commonsynapse.com · linkedin.com/in/marpat0411
References
[1] Common Synapse. Validating Patient Reality for Optic Neuritis, client-approved case study. https://commonsynapse.com/case-studies
[2] US Food and Drug Administration. Patient-Focused Drug Development: Methods to Identify What Is Important to Patients, Section VII, Considerations for Use of Social Media. February 2022. https://www.fda.gov/media/131230/download