For patient foundations

Your members are more than a survey sample.

An Experience Bank is your community’s experience, kept: consented, governed with your members, and more useful with every listening project. Nothing disappears into a one-time report.

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01
A member conversation: a sensagram
06:14

“The pamphlet explained the condition, but not how strange the first months would feel. I wish someone had said it’s okay to grieve your old routines, and that friends may stop asking after the first few weeks. I thought I was handling it wrong.”

“Another member told me, pick one person you can text without giving the whole backstory. I still use that advice.”

Routine grief0:51→Fading social support1:24→Backstory-free support2:47
02
What comes back to your foundation
Member programs

Add “it’s okay to grieve your old routines” to the newly diagnosed guide, with credit and consent set by the community

61% of 214 members
Research agenda

Fading social support in the first months surfaced unprompted; flag for the next funded study

38% of 214 members
Industry table

Consented, traceable burden-of-illness evidence, ready for a PFDD submission

Every line traces to a member’s own words, under the terms they agreed to.

How a wave compounds

Wave two starts where wave one left off.

Wave 1 surfaces a theme. Wave 2 asks a sharper question because of it. By the third wave, the theme is a trend with a baseline.

Illustrative example: verbatims, counts, and waves from an example campaign.

Wave 1 · 312 voices · one theme flagged Wave 2 · a sharper question, earned by Wave 1 Three waves · a trend with a baseline

Wave 1 · Spring

“The treatment my doctor wanted got denied twice. Nobody could tell me why, andI didn’t know appealing was even a thinguntil another patient mentioned it.”

Denial confusion→Peer-discovered appeal
Members kept describing denials they didn’t know they could appeal. Wave 2 asked who got to yes, and how.

Wave 2 · Fall

Wave 2 focus ▸ Appeals navigation Returning voices

“I had gotten denied twice before, too. But the last time, I tookthe appeal letter template from the foundationand made one key change. And it worked, approved! I cried in my car.”

The operating model

Governed with your community, from day one.

How the Experience Bank is governed matters as much as what it collects, so the defaults are stated up front, not negotiated away:

You own the Bank

The Experience Bank belongs to your foundation, not to us.

Members can withdraw

Consent comes first: we make permitted uses, withdrawal, and future contact understandable, so members choose with full clarity. Members can withdraw a recording. We match the request, remove it from the Bank, and downstream summaries update at the next refresh.

No other client touches it without approval

Every Experience Bank starts with a written governance charter your community shapes: who sits on the review group and which uses require its approval. Nothing your members share serves another Sensavera client (including pharma or health-plan engagements) except through a use that group approves. We share a template charter before you commit to anything.

Leave anytime

If we ever part ways, you take the data with you, and we delete our copy verifiably.

Representative learning

See who is heard, who is missing, and where experience differs across the community you serve.

Return value

Show members what was learned, what changed, and what comes next: the loop that keeps trust alive.

Human reviewers remain responsible for interpretation, and every finding stays traceable to the member who shared it and the terms they agreed to.

The member experience

Simple to join, safeguarded throughout.

Members open a link or scan a QR code and talk on their phone, tablet, or computer: minutes, whenever suits them. No app, no appointment, and nobody calls them. A sensagram is an AI-moderated, human-guided voice conversation, and members are told exactly that, up front, in plain language. Voice recordings are sensitive and identifiable, so the safeguards are process, not promises.

Safety triggers

A response that signals crisis or harm is flagged for human follow-up under a protocol set with your foundation. The conversation never gives medical advice, and sensitive topics are governed, not left to chance.

Careful with voice

HIPAA: a BAA covers any engagement where PHI is in scope. Recordings and transcripts are encrypted in transit and at rest, retention is set by your governance group, and audio can be discarded after transcription.

When you engage industry

Industry, on your community’s terms.

When your community chooses to engage industry (FDA Patient-Focused Drug Development meetings, patient-preference studies, HEOR), the Experience Bank lets you come to that table with governed, consented, traceable member experience instead of ad-hoc anecdotes.

Illustrative example: request names and outcomes are placeholders.

Community review group · recent use requests

  • ✓Newly diagnosed guide, second edition Approved
  • ✓University fatigue study (de-identified excerpts) Approved
  • ✓PFDD meeting testimony support Approved with conditions
  • ✕Sponsor marketing campaign Declined

Every outcome follows the charter your community wrote.

Review methods & trust →

Questions

Questions foundations ask.

Can industry sponsors see the data?

Only through a use your governance group approves. Sponsorship funds the work without buying access to it, and your review group’s decision on any request is final.

How do foundations pay for this?

Grant line items, program budgets, or industry sponsorship behind the governance firewall. We help you scope the first listening project to whichever path fits.

Build the bank your community owns.

We’ll walk through how an Experience Bank could work for your community: the consent model, the governance charter, and the first listening project.

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