How to Measure a Patient Support Program: KPIs, Adherence and Persistence
Quick answer
A patient support program is only as credible as its numbers. This guide sets out the KPIs that matter, how adherence and persistence differ, and how to show that a PSP made a difference.
The KPIs that show whether a patient support program (PSP) works fall into four layers: operational delivery, patient engagement, adherence and persistence on therapy, and patient experience and safety. Define them before launch, measure them against a baseline, and report them on a fixed cadence. Without that discipline a PSP produces activity reports rather than evidence. This guide is written for pharma brand, medical and market access teams in Egypt who commission or review a PSP.
- Measure four layers: operations, engagement, adherence and persistence, and patient experience and safety.
- Adherence and persistence are different measures. Adherence asks how much of the prescribed therapy was taken; persistence asks how long the patient stayed on it.
- A common adherence threshold in the literature is a proportion of days covered (PDC) of 80% or more, a convention used by the Pharmacy Quality Alliance for chronic medicines.
- Showing impact needs a comparison group or a baseline. Activity counts alone do not prove a PSP changed outcomes.
- Agree KPIs, data sources and consent wording with the sponsor before the first patient is enrolled.
Why measurement matters
The World Health Organization has stated that adherence to long-term therapy for chronic disease averages only 50% in developed countries and is even lower in developing countries, and that improving adherence may result in better health outcomes than making new technologies available. That is the problem a PSP is meant to address. It is also why sponsors are right to ask a simple question: what did the program change? A clear KPI framework is how a PSP answers.
We do not quote an Egypt-wide adherence figure here, because we have not verified a published national benchmark for it. Treat any figure offered without a named source and population with caution, including figures from vendors.
The four layers of PSP metrics
| Layer | Example KPIs | Typical data source | Watch out for |
|---|---|---|---|
| Operational delivery | Time from referral to first patient contact; enrolment rate; share of scheduled nurse visits completed; call attempts per patient | Program CRM, visit logs, call logs | Easy to count, but proves activity, not outcome |
| Patient engagement | Share of patients reached by phone; education modules completed; reminder confirmations; teach-back completed | Coordinator notes, app or call records | Engagement is not adherence; a patient can be reachable and still skip doses |
| Adherence and persistence | PDC or refill-based adherence; days on therapy at 3, 6 and 12 months; reasons for discontinuation | Patient-confirmed refills, pharmacy or dispensing data where available | Egypt often lacks linked dispensing data, so the method must be agreed in advance |
| Experience and safety | Patient satisfaction; reported side effects; adverse events escalated and reported to the sponsor on time | Surveys, nurse visit records, safety reporting log | Safety reporting follows the pathway agreed with the sponsor's safety function |
Adherence and persistence: define them precisely
Teams often use the two words interchangeably, and the confusion leads to weak reports. A clean definition for the contract is worth the time.
- Adherence (or compliance): how much of the prescribed therapy the patient took. In practice it is estimated from the timing of refills or the share of days covered by supplied medicine. The Pharmacy Quality Alliance uses an 80% PDC threshold for several chronic medicine classes, for example diabetes medicines.
- Persistence: how long the patient continues therapy without a gap that counts as discontinuation. It is reported in days, commonly checked at 3 months, 1 year and 2 years.
- Discontinuation reasons: record why patients stop (cost, side effects, confusion about instructions, a physician decision, access). These reasons tell the sponsor what to fix.
AHRQ's Re-Engineered Discharge toolkit offers a useful way to classify non-adherence: intentional (for example cost or fear of side effects), inadvertent (for example confusion about instructions), and system or provider error (for example conflicting or missing information). Tagging each discontinuation with one of these three causes turns a number into an action list.
Data in Egypt: what is realistic
Many international KPI frameworks assume linked pharmacy or claims data. In Egypt a PSP will often rely on data it generates itself: enrolment records, call and visit logs, nurse documentation, patient-confirmed refills and satisfaction surveys. That is acceptable if the report states its sources and limits. Agree early which of these are primary evidence and which are supporting context.
Patient data also carries legal duties. Egypt's Personal Data Protection Law (Law No. 151 of 2020) governs personal data processing, and health data is sensitive. Consent wording, data sharing with the sponsor (anonymised or aggregated where possible) and retention rules should be agreed with the sponsor's legal and compliance teams. This article is not legal advice.
Proving impact, not just activity
An IQVIA case study on a retail-dispensed chronic brand illustrates the point. By matching PSP patients to dispensing records and comparing them with matched control groups, it reported no significant difference in the first three months, then 69% of PSP patients still on medication at one year versus 55% of controls, and 46% versus 34% at two years. This is a vendor-published case from another market and one brand, so it is an illustration of method, not a benchmark for Egypt. It shows two lessons: effects on persistence can take months to appear, and a comparison group is what turns a persistence curve into evidence.
In Egypt, where matched dispensing data may not exist, practical alternatives include a pre-program baseline for the same patients, a comparison of enrolled and eligible-but-not-enrolled patients where ethically and operationally possible, and consistent definitions over time. Be explicit that these are weaker designs than a controlled study.
Set KPIs before launch
Digital patient support specialists such as SmartPatient recommend defining KPIs before a program launches so purpose and success measures are agreed from the start. They describe standard KPIs (user uptake and retention, impact on adherence, patient satisfaction) plus bespoke KPIs designed with the pharma partner. The same logic applies to a service-led PSP.
- Name the primary outcome: for example persistence at 12 months, or share of patients with PDC of 80% or more.
- Define each KPI in one sentence, with numerator, denominator and data source.
- Capture a baseline before or at enrolment.
- Agree the reporting cadence, such as a monthly operational dashboard and a quarterly outcomes review.
- Agree how safety events are escalated and reported, and by when.
- Agree what the sponsor will do with the results, including when a KPI triggers a program change.
Common mistakes
- Reporting enrolments and calls as if they were outcomes.
- Using "adherence" without a formula.
- Counting only patients who stay in contact, which flatters the results.
- Ignoring discontinuation reasons.
- Promising uplift figures before the first cohort has been measured.
- Mixing patient-level data and sponsor reporting without a consent and anonymisation plan.
How Hospitalia can help
Hospitalia is an Egypt-based integrated home healthcare and corporate medical services platform. Its patient support programs combine coordinator contact and trained nurse home visits for therapies such as injections and infusions, with documented visits and monthly reporting to the sponsor. Which KPIs and data sources fit your therapy area is agreed during scoping. See our guides on home injection and infusion support, medication adherence programs, and building versus outsourcing a PSP for the operating detail.
Call 01063151838 or book a scoping conversation. We will help you define KPIs, data sources and reporting before launch.
Explore patient support programsFrequently asked questions
What are the most important KPIs for a patient support program?
Start with persistence on therapy at 3, 6 and 12 months and a defined adherence measure such as PDC of 80% or more. Support them with operational KPIs (time to first contact, visit completion), engagement and patient experience, and a safety reporting log.
What is the difference between adherence and persistence?
Adherence is how much of the prescribed therapy a patient takes. Persistence is how long the patient continues therapy before stopping. A patient can persist for a year and still miss many doses.
What is proportion of days covered (PDC)?
PDC is the share of days in a period for which a patient has medicine available. The Pharmacy Quality Alliance uses 80% as the threshold for adherence in several chronic medicine measures. It shows supply, not actual ingestion.
Can a PSP prove it improves outcomes in Egypt?
It can show change against a baseline or comparison group if the design and data sources are agreed upfront. Without linked dispensing data, designs are weaker than controlled studies, and the report should say so.
Who owns patient data in a PSP?
Ownership and sharing rules should be set in the contract with the sponsor and the PSP provider, following Egypt's Personal Data Protection Law (Law No. 151 of 2020) and the sponsor's compliance policies. Seek legal advice for your program.
How often should a PSP report to the sponsor?
A monthly operational report and a quarterly outcomes review are a common structure. Safety events should follow the faster timelines agreed with the sponsor's safety function.
