Most pharma teams still find patient advocacy groups the hard way: Google, a colleague’s spreadsheet, an agency slide, or whoever emailed last. That is not a map of the landscape, and it is not a way to decide who to partner with.
PatientGroups.co is a patient advocacy group database built for brand, medical, and patient-engagement teams. It is for identifying organisations, scoring them for partnership fit, and monitoring what they do over time — not for dumping a list into a deck once a year.
What pharma teams actually need
Finding a patient organisation is the easy part. The work is answering:
- Who is active in this indication, in this country, with a real membership rather than a letterhead?
- Who is already in a competitor’s orbit?
- Who can support a trial, a disease-awareness campaign, or a policy conversation — and who cannot?
- What changed since the last review?
A static directory cannot answer those questions. Scoring and monitoring can.
How scoring helps partnership decisions
Partnership scoring is not a vanity metric. It is a way to compare organisations on the dimensions that matter for a specific brief: relevance to the indication, geographic coverage, public activity, independence, and whether they look like a genuine community or a one-person brand.
The point is to stop treating “we spoke to a patient group” as a checkbox. If you are building a patient organisation mapping tool into brand planning, you need a repeatable method — the same criteria, applied again next quarter.
I wrote up the mistakes I see most often in Finding and scoring patient advocacy groups: what most pharma teams get wrong.
Who it is for
- Brand and medical teams who need a defensible view of the advocacy landscape
- Patient engagement and advocacy leads who are tired of rebuilding the same list
- Agencies supporting pharma on partnerships, trials, or disease awareness
Patients looking for a support community should use PatientGroups.ai instead — that product is free and built for them.
Related products
PatientGroups.co sits under Phormulate Ltd. Unmet-need signals from public conversation are a different problem, handled by IndicationIQ.