Ask patients whether an accurate medication list matters and the answer is close to unanimous. Ask what they actually do about it, and a more complicated picture appears — one where high trust in the clinician coexists with a quiet, unresolved uncertainty about the list itself.
Here is what patients have said when researchers asked them directly.
Patients say it matters. They also don’t tell you everything.
In a survey of 577 primary care patients inside an integrated health system, agreement on importance was near-total — and disclosure was not (Gionfriddo et al., PLOS One 2021):
- 99% said it was important their provider knew about their prescription medications; 94% said the same for OTCs; 84% for herbal supplements.
- But only 84% always told their provider about prescriptions — dropping to 65% for OTCs and 60% for herbals.
- 92% reported having an up-to-date list of their medications.
- Patients in that sample had an average of 10.4 medications listed in the EHR but self-reported an average of 7.0.
The gap isn’t indifference. One patient described taking vitamins she hadn’t mentioned and worrying herself sick about a possible interaction rather than raising it. Another noted that a dose change made over the phone or through the portal simply never appeared in the record afterward. A third observed that if you visited each of her specialists in turn, you’d find slight disparities in every list.
Trust in the clinician is high — and largely unexamined
In interviews with older adults taking five or more daily prescriptions, researchers found a high level of trust in the provider’s knowledge, skill, and experience, paired with a low level of patient engagement in decisions about stopping medications. Participants expected their primary care physician to coordinate across every specialist treating them, and expected the pharmacist to catch interactions and flag changes in a pill’s color, shape, or dose (Jallow et al., Innovation in Aging 2022).
That’s worth sitting with. Patients are not auditing the list. They are assuming someone upstream has already reconciled it — which is precisely the assumption that no single institution is structurally positioned to fulfill.
What happens when patients read the record
Federal transparency rules changed who can see the drift. In a survey of nearly 30,000 respondents across three US health systems, 1 in 5 patients who read their visit notes reported finding a mistake, and 40% of those considered it serious. Among errors patients characterized as very serious, medications ranked among the most common categories — alongside diagnoses, medical history, and test results. Older and sicker patients were twice as likely to report a serious error than younger, healthier ones (Bell et al., JAMA Netw Open 2020).
One caveat matters and should travel with that statistic: these were patients who already read their notes online — portal-enrolled and engaged. It is “1 in 5 among patients who read their records,” not 1 in 5 of everyone.
Reading, for those patients, is not a source of anxiety. In a survey of more than 22,000 note readers, 72.6% rated reading notes as very important for taking care of their health and 69.9% for feeling in control of their care. Only 3.3% were very confused and 4.8% more worried afterward (OpenNotes after 7 years, J Med Internet Res 2019).
Reporting an error does not damage the relationship
This is the finding most likely to surprise, and it has been replicated. When patients were given a simple feedback link at the end of their notes, the results after a year were consistent (Bell et al., BMJ Qual Saf 2017):
- 23% of reports contained a potential safety concern — most commonly possible mistakes about medications.
- On clinician review, 64% of those were confirmed as definite or possible safety concerns.
- 57% of confirmed cases resulted in a change to the record or to care.
- 99% of patients and care partners found the tool valuable; 97% wanted it to continue; 98% reported unchanged or improved relationships with their clinician.
- No clinician in the pilot reported worsening workflow or a damaged patient relationship.
A separate survey of 4,592 note readers found that of the 7% who contacted the office about a note, 29% perceived an error — and 85% were satisfied with how it was resolved. Nearly all reported feeling better (37%) or the same (62%) about their doctor afterward.
Being asked is what builds the trust. Patients who flagged something did not think less of the clinician who fixed it — they thought more of the practice that had made flagging possible.
Patients want an easier way to update the list
The mechanisms available today are either burdensome or ineffective, and patients say so.
Bringing the bottles works, but almost nobody is asked. In the PLOS One study, 88% of staff said having the bottles at the visit would help them — yet 63% of patients said they never bring their medications, and 58% of those said it was because no one had ever told them to. Just 9% of patients bring bottles half the time or more. Encouragingly, 72% said they would be comfortable or very comfortable doing so if asked. The ones who resisted had a practical objection: one patient described having to bag eight medications organized in a specific order on the bathroom counter, haul them in, and reorganize them at home.
The portal, by itself, does not close the gap. In a study comparing 84 portal users with 79 non-users, portal users had just as many discrepancies between the EHR list and self-report — and notifying physicians of the discrepancies by secure message had no effect on whether the list got updated. Non-prescription drugs were the most frequently overlooked category (Schnipper et al., Int J Med Inform 2007). A cluster-randomized trial of a pre-visit portal questionnaire two decades later found no improvement in list accuracy over usual care (OR 1.01, P = .98), and noted that only about a third of patients have portal access at all (Gionfriddo et al., JMIR Form Res 2022).
The formal route is slow. HIPAA gives patients the right to request an amendment to their record; the provider decides, and has up to 60 days to respond. That is a legal remedy, not a workflow — and it is not what a patient wants when they simply stopped taking a statin in March.
What the evidence points toward
- Patients overwhelmingly believe the clinician should know everything they take — and under-report OTCs and supplements anyway.
- Trust in the clinician is high but passive; patients assume reconciliation has already happened somewhere.
- When patients do read the record, they find real things, and medications are among the categories they flag most seriously.
- Flagging an error tends to strengthen the relationship when the practice responds.
- The barrier is not willingness. It is that nobody asks, and the existing channels — bring a bag of bottles, log into a portal, file an amendment request — don’t fit an ordinary life.
The patient is the only party who sees the whole picture: every prescriber, every pharmacy, the OTCs, and the medication they quietly stopped. The question is whether they review it with you, before the visit — or encounter the discrepancies alone, in a portal, and draw their own conclusions.
ConfirmMyMeds is a working application built for the first path: the patient’s list, sent before the appointment as a secure link with no portal account and no app, answered at home with the bottles in hand. What they confirm and what they flag comes back timestamped and attributed. Nothing is written to the record — the clinician decides what it says. We have no outcome data yet, and we’ll publish it when we do, including the parts that don’t flatter us.