Illustrative case study · Healthcare & Life Sciences

Most of the wait for a diagnosis comes before the first referral.

A Condition Y diagnosis runs through two kinds of doctor: the primary care doctors patients see first and the specialists who confirm. A diagnostics company deciding where its new test belongs needed to see where time is lost. With 240 patients and caregivers, we mapped the path and delivered the report in 14 days.

Illustrative scenario

Samplen = 240

Illustrative report

Diagnostic Journey Mapping

Where should a new test for Condition Y go first: primary care, where patients start, or the specialists who confirm?

Study architecture

Map the stagesEach visit and referral, dated from appointment records

Find the delayTime at each stage and how often the first diagnosis changed

Trace the sourcesWhere patients and caregivers found information

Scope

The longest wait may sit well before a patient reaches the specialist who confirms the diagnosis.

Sample

240

Adults diagnosed with Condition Y in the past five years, and adults who care for one.

Research by

Study typePatient pathway study

ScenarioIllustrative

Condition Y diagnosis path · Executive reportExecutive summary

Executive summary

Most of the wait for a Condition Y diagnosis passes before the first referral

The 240 patients and caregivers dated each visit and referral on the way to a confirmed Condition Y diagnosis. The median path took 1.9 years, and the stretch between the first primary care visit and the first referral took the most time. 46% were first told it was something else, and for them confirmation took 2.6 years against 1.3.

1.9years, n = 240

the median from first symptom to confirmed diagnosis

46%n = 240

first told they had something else

73%n = 240

first raised symptoms with a primary care doctor

4median, n = 110

clinicians seen when the first diagnosis was revised

Figures rounded. Base n = 240 patients and caregivers unless stated.

Top lines

1Most of the wait passes before the first referralTime at each stage, first symptom to confirmation03

2A revised first diagnosis adds more than a yearTime and clinicians seen, by first diagnosis04

3Primary care sees 73% of patients firstWhere symptoms were first raised05

4Caregivers turn to patient groups twice as often as patientsInformation sources before diagnosis06

5Sample, screener and quality controlWho we interviewed and how07

AAppendixStage definitions and data tables09

Sample

240 patients and caregivers

Segments

120 patients, 120 caregivers

Method

AI-moderated interviews, stage by stage

Dates

91% of visit dates from records

Illustrative report. The company, scenario, and all figures are fictional.

Illustrative report02

Illustrative reportExecutive summary

Illustrative example. The company, scenario, and all figures are fictional. They show UserCue’s method and deliverable format. They do not come from any client study.

The engagement

Delivered in

days, with the report, the data file and a live readout.

Interviews

240

Adults with Condition Y and adults who care for one.

Audiences

120 patients and 120 caregivers.

Method

Journey map

Each visit and referral dated, from first symptom to a confirmed diagnosis.

The brief

Client

A diagnostics company

Decision

Where a new test should enter the path to diagnosis

Stage

Before launch planning

How we ran it

Approach

AI-moderated interviews, stage by stage

Measured

Stages, time to diagnosis, revised diagnoses, information sources

Sample

Adult patients and adult caregivers

Headline figures

Revised46%

were first told they had something else before Condition Y was confirmed

First stop73%

first raised their symptoms with a primary care doctor

Time1.9

years, the median from first symptom to a confirmed diagnosis

The question

Where should the new test meet patients first?

The diagnostics company had a test that could shorten the path to a Condition Y diagnosis, and two places to put it: the primary care doctors patients see first, or the specialists who confirm. The product team needed the people who lived it to show, stage by stage, where patients lose time.

What stages do patients pass through on the way to a confirmed diagnosis of Condition Y?

Where is the time lost, and how often is the first diagnosis revised?

Where do patients and caregivers find information along the way?

What we did

How the study ran, start to finish.

1Kickoff
Two places a new test could go.
Where should our new test go first: primary care or the specialists who confirm Condition Y? The kickoff turned it into three questions: each stage patients pass through, where time is lost and diagnoses change, and where they find information.
2Design
Two groups, every stage dated.
Adults diagnosed with Condition Y qualified, as did adults who care for one: 120 patients and 120 caregivers. Stage by stage, from first symptom to diagnosis, each respondent dated every visit and referral, using records where they had them.
3Fielding
240 paths, visit by visit.
Interviews ran by voice or text, quant and qual in one conversation, a median of 39 minutes, each asking what clinicians first called the symptoms. The researcher read all 281 and removed 41 for clashing dates, rushed responses or an unconfirmed diagnosis, leaving 240.
4Analysis
The delay sits before the first referral.
The researcher matched each stage’s timing to how the first diagnosis turned out, and the wait ran longest where that diagnosis was later revised. The 46% first told it was something else saw a median of four clinicians before confirmation, against two.
5Readout
Primary care sees 73% of patients first.
The researcher led the product team through a 35-page report in a live readout covering the stage map, patient and caregiver cuts and information sources. The company took the new test to primary care first, where it can act before the first referral.

What we found

Four findings from the report.

Summary

Reaching a confirmed Condition Y diagnosis takes a median of 1.9 years, and most of that time passes before the first referral. 46% were first told it was something else, and for them confirmation took 2.6 years against 1.3. Primary care is where 73% of patients start.

Condition Y diagnosis path · Executive reportTop line 1

Top line 1 of 4

Most of the wait passes before the first referral

¹ Stage timing from dated visits and referrals; mean share per person, n = 240.

² Dates estimated without records are flagged in the data file.

The median path from first symptom to a confirmed Condition Y diagnosis took 1.9 years. The stretch from the first primary care visit to the first referral took 57% of each person’s time on average¹, more than the other three stages together. The median specialist wait was 7 weeks, and confirmation followed a median of 2 months after the first specialist visit.

1.9years, n = 240

median, first symptom to confirmed diagnosis

57%of the time

spent between the first visit and the first referral

9months, median

first visit to first referral, the longest stage

7weeks, median

waiting for the first specialist visit

Share of the time to diagnosis spent at each stage

Mean share of each person’s time, by stage (n = 240)

Time from first symptom to confirmation (n = 240)

Under two yearsTwo to three yearsOver three years

Longest single stage, as each person lived it (n = 240)

91% of stage dates come from respondents’ own appointment records; the rest were estimated to the season and year. Shares are each person’s time at a stage divided by their total, averaged across all 240; stage medians are in months. Caregivers dated the path of the adult they care for.

Supporting evidence

Stage medians from patients and from caregivers differ by less than a month. § 3.2
Where a visit could not be dated from records, respondents gave the season and year; 9% of dates rest on that. § 3.3²

Illustrative report03

Condition Y diagnosis path · Executive reportTop line 2

Top line 2 of 4

A revised first diagnosis adds more than a year

¹ Q7. Before Condition Y was confirmed, were you told you had something else? Single select, n = 240.

² Who asked for each referral is self-reported; directional.

46% were first told they had something else before Condition Y was confirmed¹. For them the median path took 2.6 years, against 1.3 for the 130 whose first diagnosis held, and they saw a median of four clinicians before confirmation, against two. Before their first referral, 78% of them made three or more primary care visits, against 26% of those whose first diagnosis held.

46%n = 240

had a revised first diagnosis

2.6years, n = 110

median to confirmation after a revised diagnosis

1.3years, n = 130

median when the first diagnosis held

4median, n = 110

clinicians seen after a revised first diagnosis

Time to diagnosis and clinicians seen, by first diagnosis

Saw three or more clinicians before confirmation

First diagnosis given (n = 240)

Revised laterHeld

Asked for a referral themselves

A revised first diagnosis is one the respondent was given and later saw replaced by Condition Y. Medians in years; two-proportion test at 95% confidence for the clinician shares.

Supporting evidence

Revised first diagnoses came from primary care in 83% of cases (top line 3). § 4.2
Caregivers were more likely than patients to have asked for the referral that led to confirmation. § 4.3²

Illustrative report04

Condition Y diagnosis path · Executive reportTop line 3

Top line 3 of 4

Primary care sees 73% of patients first

¹ Q5. Where did you first raise these symptoms with a clinician? Single select, n = 240.

² Return visits after urgent care are self-reported; directional.

73% first raised their symptoms with a primary care doctor¹, and 9% at urgent care. Of the 110 whose first diagnosis was later revised, 83% received it in primary care, the first stop for most patients. Few went straight to a specialist, 6%.

73%n = 240

first raised symptoms with a primary care doctor

83%n = 110

of revised first diagnoses were given in primary care

9%n = 240

first went to urgent care

6%n = 240

went straight to a specialist

Where symptoms were first raised

First place symptoms were raised (n = 240)

Where revised first diagnoses were given (n = 110)

Primary careUrgent careTelehealth

Three or more primary care visits before referral

Single select for where symptoms were first raised. “Other” includes pharmacy and workplace clinics. Caregivers report the path of the adult they care for.

Supporting evidence

Where a caregiver came to appointments, the first referral came sooner at the median. § 5.2
After an urgent care visit, patients more often went back to primary care than on to a referral. § 5.3²

Illustrative report05

Condition Y diagnosis path · Executive reportTop line 4

Top line 4 of 4

Caregivers turn to patient groups twice as often as patients

¹ Q8. Which sources did you use for information about the symptoms before the diagnosis? Multi-select, n = 240.

² The order in which sources were used is self-reported; directional.

Before the diagnosis, online symptom searches were the most used source, at 68%¹, ahead of the primary care doctor at 52%. Patient groups split by role: 57% of caregivers used one, against 26% of patients. Caregivers also kept written symptom logs more often, and brought them to appointments.

68%n = 240

used online symptom searches before diagnosis

52%n = 240

turned to their primary care doctor

57%n = 120

of caregivers used a patient group

26%n = 120

of patients used a patient group

Information sources used before diagnosis

Sources used before diagnosis, multi-select (n = 240)

Used a patient group, by role

Kept a written symptom log, by role

Multi-select; shares do not sum to 100. Sources asked for the period before Condition Y was confirmed. Patients n = 120, caregivers n = 120.

Supporting evidence

Patients who brought a symptom log to appointments were referred after fewer primary care visits. § 6.2
Online searches often came first, before the first clinic visit. § 6.3²

Illustrative report06

Top line 1 of 4 · page 03Illustrative report · top line 1 of 4 · swipeIllustrative report

Question 1 · The stages

Most of the wait comes before the first referral.

From first symptom to confirmed diagnosis took a median of 1.9 years. The stretch from the first primary care visit to the first referral took 57% of each person’s time on average, more than the other three stages together.

First visit to first referral57%

First symptom to first visit26%

Specialist visit to confirmation9%

Referral to specialist visit8%

Mean share of each person’s time to diagnosis, by stage · n = 240

Question 2 · Revised diagnoses

A revised first diagnosis adds more than a year.

46% were first told they had something else. For them the median path to confirmation took 2.6 years, against 1.3 for the 130 whose first diagnosis held, and they saw a median of four clinicians before confirmation, against two.

2.6 yearsfirst diagnosis later revised

1.3 yearsfirst diagnosis held

Median years to a confirmed diagnosis · n = 110 vs n = 130

Question 2 · Where it starts

Primary care sees 73% of patients first.

73% first raised their symptoms with a primary care doctor and 9% at urgent care. Of the 110 whose first diagnosis was later revised, 83% received that first diagnosis in primary care.

Primary care doctor73%

Urgent care9%

Telehealth visit8%

Specialist, directly6%

Where symptoms were first raised · single select · n = 240

Question 3 · Information

Caregivers turn to patient groups twice as often as patients.

Online symptom searches were the most used source before diagnosis, at 68%, ahead of the primary care doctor at 52%. 57% of caregivers used a patient group, against 26% of patients.

Online symptom searches68%

Patient groups, caregivers57%

Primary care doctor52%

Patient groups, patients26%

Sources used before diagnosis · multi-select · n = 240; by role n = 120 each

What the diagnostics company did

Three moves made with the report.

1The launch · from finding 3

Put primary care first in the launch.

The new test launches with the primary care doctors who see 73% of patients first, before a revised diagnosis adds to the wait.

2The evidence · from finding 2

Focused its evidence on revised diagnoses.

The company’s first evidence study follows patients whose first diagnosis is in doubt, the group where confirmation takes more than a year longer.

3The support · from finding 4

Wrote a symptom log for caregivers.

Caregivers use patient groups twice as often as patients and keep symptom logs more often, so the launch includes a log they can bring to the first visit.

Illustrative example. The company, scenario, and all figures are fictional. They show UserCue’s method and deliverable format. They do not come from any client study.

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Market assessment

Most of the wait for a diagnosis comes before the first referral.

How the study ran, start to finish.

1Kickoff

Two places a new test could go.

Where should our new test go first: primary care or the specialists who confirm Condition Y? The kickoff turned it into three questions: each stage patients pass through, where time is lost and diagnoses change, and where they find information.

2Design

Two groups, every stage dated.

Adults diagnosed with Condition Y qualified, as did adults who care for one: 120 patients and 120 caregivers. Stage by stage, from first symptom to diagnosis, each respondent dated every visit and referral, using records where they had them.

3Fielding

240 paths, visit by visit.

Interviews ran by voice or text, quant and qual in one conversation, a median of 39 minutes, each asking what clinicians first called the symptoms. The researcher read all 281 and removed 41 for clashing dates, rushed responses or an unconfirmed diagnosis, leaving 240.

4Analysis

The delay sits before the first referral.

The researcher matched each stage’s timing to how the first diagnosis turned out, and the wait ran longest where that diagnosis was later revised. The 46% first told it was something else saw a median of four clinicians before confirmation, against two.

5Readout

Primary care sees 73% of patients first.

The researcher led the product team through a 35-page report in a live readout covering the stage map, patient and caregiver cuts and information sources. The company took the new test to primary care first, where it can act before the first referral.

Four findings from the report.

Summary

Condition Y diagnosis path · Executive reportTop line 1

Top line 1 of 4

Most of the wait passes before the first referral

¹ Stage timing from dated visits and referrals; mean share per person, n = 240.

² Dates estimated without records are flagged in the data file.

1.9years, n = 240

median, first symptom to confirmed diagnosis

57%of the time

spent between the first visit and the first referral

9months, median

first visit to first referral, the longest stage

7weeks, median

waiting for the first specialist visit

Share of the time to diagnosis spent at each stage

Mean share of each person’s time, by stage (n = 240)

Time from first symptom to confirmation (n = 240)

Under two yearsTwo to three yearsOver three years

Longest single stage, as each person lived it (n = 240)

Supporting evidence

Stage medians from patients and from caregivers differ by less than a month. § 3.2
Where a visit could not be dated from records, respondents gave the season and year; 9% of dates rest on that. § 3.3²

Illustrative report03

Condition Y diagnosis path · Executive reportTop line 2

Top line 2 of 4

A revised first diagnosis adds more than a year

¹ Q7. Before Condition Y was confirmed, were you told you had something else? Single select, n = 240.

² Who asked for each referral is self-reported; directional.

46%n = 240

had a revised first diagnosis

2.6years, n = 110

median to confirmation after a revised diagnosis

1.3years, n = 130

median when the first diagnosis held

4median, n = 110

clinicians seen after a revised first diagnosis

Time to diagnosis and clinicians seen, by first diagnosis

Saw three or more clinicians before confirmation

First diagnosis given (n = 240)

Revised laterHeld

Asked for a referral themselves

A revised first diagnosis is one the respondent was given and later saw replaced by Condition Y. Medians in years; two-proportion test at 95% confidence for the clinician shares.

Supporting evidence

Revised first diagnoses came from primary care in 83% of cases (top line 3). § 4.2
Caregivers were more likely than patients to have asked for the referral that led to confirmation. § 4.3²

Illustrative report04

Condition Y diagnosis path · Executive reportTop line 3

Top line 3 of 4

Primary care sees 73% of patients first

¹ Q5. Where did you first raise these symptoms with a clinician? Single select, n = 240.

² Return visits after urgent care are self-reported; directional.

73%n = 240

first raised symptoms with a primary care doctor

83%n = 110

of revised first diagnoses were given in primary care

9%n = 240

first went to urgent care

6%n = 240

went straight to a specialist

Where symptoms were first raised

First place symptoms were raised (n = 240)

Where revised first diagnoses were given (n = 110)

Primary careUrgent careTelehealth

Three or more primary care visits before referral

Single select for where symptoms were first raised. “Other” includes pharmacy and workplace clinics. Caregivers report the path of the adult they care for.

Supporting evidence

Where a caregiver came to appointments, the first referral came sooner at the median. § 5.2
After an urgent care visit, patients more often went back to primary care than on to a referral. § 5.3²

Illustrative report05

Condition Y diagnosis path · Executive reportTop line 4

Top line 4 of 4

Caregivers turn to patient groups twice as often as patients

¹ Q8. Which sources did you use for information about the symptoms before the diagnosis? Multi-select, n = 240.

² The order in which sources were used is self-reported; directional.

68%n = 240

used online symptom searches before diagnosis

52%n = 240

turned to their primary care doctor

57%n = 120

of caregivers used a patient group

26%n = 120

of patients used a patient group

Information sources used before diagnosis

Sources used before diagnosis, multi-select (n = 240)

Used a patient group, by role

Kept a written symptom log, by role

Multi-select; shares do not sum to 100. Sources asked for the period before Condition Y was confirmed. Patients n = 120, caregivers n = 120.

Supporting evidence

Patients who brought a symptom log to appointments were referred after fewer primary care visits. § 6.2
Online searches often came first, before the first clinic visit. § 6.3²

Illustrative report06

Top line 1 of 4 · page 03Illustrative report · top line 1 of 4 · swipeIllustrative report

Question 1 · The stages

Most of the wait comes before the first referral.

First visit to first referral57%

First symptom to first visit26%

Specialist visit to confirmation9%

Referral to specialist visit8%

Mean share of each person’s time to diagnosis, by stage · n = 240

Question 2 · Revised diagnoses

A revised first diagnosis adds more than a year.

2.6 yearsfirst diagnosis later revised

1.3 yearsfirst diagnosis held

Median years to a confirmed diagnosis · n = 110 vs n = 130

Question 2 · Where it starts

Primary care sees 73% of patients first.

73% first raised their symptoms with a primary care doctor and 9% at urgent care. Of the 110 whose first diagnosis was later revised, 83% received that first diagnosis in primary care.

Primary care doctor73%

Urgent care9%

Telehealth visit8%

Specialist, directly6%

Where symptoms were first raised · single select · n = 240

Question 3 · Information

Caregivers turn to patient groups twice as often as patients.

Online symptom searches were the most used source before diagnosis, at 68%, ahead of the primary care doctor at 52%. 57% of caregivers used a patient group, against 26% of patients.

Online symptom searches68%

Patient groups, caregivers57%

Primary care doctor52%

Patient groups, patients26%

Sources used before diagnosis · multi-select · n = 240; by role n = 120 each

Three moves made with the report.

1The launch · from finding 3

Put primary care first in the launch.

The new test launches with the primary care doctors who see 73% of patients first, before a revised diagnosis adds to the wait.

2The evidence · from finding 2

Focused its evidence on revised diagnoses.

The company’s first evidence study follows patients whose first diagnosis is in doubt, the group where confirmation takes more than a year longer.

3The support · from finding 4

Wrote a symptom log for caregivers.

Caregivers use patient groups twice as often as patients and keep symptom logs more often, so the launch includes a log they can bring to the first visit.

Illustrative example. The company, scenario, and all figures are fictional. They show UserCue’s method and deliverable format. They do not come from any client study.

Where should the new test meet patients first?

What stages do patients pass through on the way to a confirmed diagnosis of Condition Y?

Where is the time lost, and how often is the first diagnosis revised?

Where do patients and caregivers find information along the way?

How the study ran, start to finish.

Two places a new test could go.

Two groups, every stage dated.

240 paths, visit by visit.

The delay sits before the first referral.

Primary care sees 73% of patients first.

Four findings from the report.

Most of the wait comes before the first referral.

A revised first diagnosis adds more than a year.

Primary care sees 73% of patients first.

Caregivers turn to patient groups twice as often as patients.

Three moves made with the report.

Put primary care first in the launch.

Focused its evidence on revised diagnoses.

Wrote a symptom log for caregivers.

Bring us your next launch question.

Clinical Lab QC Materials Sizing

Urgent Care Point-of-Care Panel Market Entry

Health System Supply Spend Analytics

Where should the new test meet patients first?

What stages do patients pass through on the way to a confirmed diagnosis of Condition Y?

Where is the time lost, and how often is the first diagnosis revised?

Where do patients and caregivers find information along the way?

How the study ran, start to finish.

Two places a new test could go.

Two groups, every stage dated.

240 paths, visit by visit.

The delay sits before the first referral.

Primary care sees 73% of patients first.

Four findings from the report.

Most of the wait comes before the first referral.

A revised first diagnosis adds more than a year.

Primary care sees 73% of patients first.

Caregivers turn to patient groups twice as often as patients.

Three moves made with the report.

Put primary care first in the launch.

Focused its evidence on revised diagnoses.

Wrote a symptom log for caregivers.

Bring us your next launch question.

Clinical Lab QC Materials Sizing

Urgent Care Point-of-Care Panel Market Entry

Health System Supply Spend Analytics