How to measure the impacts of the use of data reported by patients? — Rapid review of the literature

1️⃣ ANALYTICAL SUMMARY

Context and issues — an asserted potential, a still narrow measurement The data reported by patients (PROMs, for patient-reported health outcomes; PREMs, for patient experience) are presented, in Canadian health policies, as a lever for person-centred care, the model of the Family Medicine Centre and the ‘quadruple aim’ (p. 6). However, the document reminds us that the literature has mainly focused on the barriers and levers to implementation and the direct clinical effects, while the measurement of the impacts of their collection and use remains poorly documented at the organisational and systemic levels (p. 6). It is this blind spot that the review seeks to illuminate, by listing the variables that can be mobilised to evaluate these impacts.

Operational contributions — a structured inventory of what is measurable From 60 included studies (2015-2025), the review identifies 46 variables organised into 10 categories, ranging from service use to action taken triggered by the results (p. 17). It also lists the data collection methods actually employed and about a dozen structured frameworks or tools (CMO, iPARIHS, NASSS, RE-AIM, SROI analysis…) (p. 19-20). The central operational message: a large-scale deployment is not limited to the addition of a measurement tool; it requires training, integration into workflows, clarification of roles, and prior definition of relevant variables (p. 20-21).

2️⃣ KEY POINTS OF THE DOCUMENT

1️⃣ The evaluation remains focused on clinical aspects and short-term performance. The most common variables relate to emergency visits, hospitalisations, readmissions, consultations, and treatment management; more systemic dimensions (continuity, coordination, organisational learning) remain poorly documented (Finding 1, p. 3).

2️⃣ The studied environments are mainly hospital or specialised. Of the 60 studies, 36.8% take place in a hospital context and 32.4% in a specialised clinic, compared to only 5.9% in primary care; oncology largely dominates the specialties (Finding 2 and Description of the studies, p. 4 and p. 10).

3️⃣ PREMs are almost absent. 96.7% of the included studies focus on PROMs and only 3.3% (2 articles) on PREMs — the reported experience remains poorly evaluated as an object of impact (Finding 3 and p. 10).

4️⃣ The measurement mainly relies on already available data. Medical-administrative data represent 43.9% of the measurement sources (36/82), ahead of questionnaires (30.5%) and interviews (13.4%); this dependence directs the evaluation towards what is easily quantifiable (Finding 4 and Data collection method, p. 4 and p. 19).

5️⃣ Few studies rely on a structured framework. Only 12 studies out of 60 use a tool or a formalised framework (CMO, iPARIHS, NASSS, RE-AIM, SROI, PAM…); the absence of target indicators and a common framework limits comparability and management (Findings 5-6 and Tools, p. 5 and p. 19-20).

3️⃣ ACTION PATHS FOR LOCAL ACTORS

1️⃣ Clarify the measurement objective before collection. Rely on the logic of the document (p. 20-21) to define, upstream, what we want to measure, at what level (service point or aggregated data) and for what decision — clinical, continuous improvement or governance.

2️⃣ Draw from the menu of 46 variables and 10 categories. Use the typology (p. 17-18) as a selection grid to choose a small number of truly relevant variables rather than multiplying unused descriptive measures.

3️⃣ Do not limit yourself to medico-administrative data. Since 43.9% of the measures rely on existing data (p. 19), also plan for measures of experience, communication, and coordination, which are less captured but central to assessing value.

4️⃣ Adopt a structured implementation evaluation framework. Draw inspiration from the listed frameworks (RE-AIM, NASSS, iPARIHS, CMO; SROI for economic value) — p. 19-20 — to make the evaluation comparable and manageable from the outset.

5️⃣ Support the implementation, not just the tool. Plan for team training, integration into workflows, clarification of roles, and feedback tools, otherwise the collection may be underutilised (p. 20-21).

6️⃣ Adapt to the context of primary and longitudinal care (unmet need). The document itself notes that its variables, based on hospital episodes, are poorly suited to long trajectories (p. 4). In primary care, plan for variables of continuity, interprofessional coordination, and longitudinal follow-up, to be constructed locally in the absence of a validated model.

4️⃣ ADDITIONAL REFERENCES

Internal References Health Practices 

• Patient experience and experiential knowledge: two concepts to clarify to develop engagement (Practices in Health, July 2025). Direct complement on the dimension of “experience” and “empowerment”, little covered by the PREMs in the review. https://pratiquesensante.odoo.com/blog/pratiques-15/experience-patient-et-savoir-experientiel-deux-notions-a-clarifier-pour-developper-lengagement-ou-la-participation-4912
• Health Partnerships and Patient Partners (Practices in Health, May 2026). Addresses the involvement of patients in the design, selection, and interpretation of PROMs/PREMs — participatory angle absent from the analysed corpus. https://pratiquesensante.odoo.com/en/blog/practices-15/health-partnerships-and-patient-partners-5929

External References 

1. OECD — PaRIS, Does Healthcare Deliver? (Patient-Reported Indicator Surveys, February 2025). First international standard of PROMs/PREMs in primary care (107,000 patients, 19 countries): complements the underrepresented “primary care” angle in the review. https://www.oecd.org/fr/about/programmes/patient-reported-indicator-surveys-paris.html
2. HAS — Quality Indicators Reported by Patients (thematic page, updated 2025; PROMs, PREMs, e-Satis). Francophone reference framework for definitions, guides, and national devices. https://www.has-sante.fr/jcms/p_3306665/fr/indicateurs-de-qualite-percue-par-les-patients
3. HAS — Guides for Using PROMs in Routine Clinical Practice (2024). Practical tools (general guide + guides by pathology; EQ-5D, SF-36, SF-12) to move from measurement to clinical use. https://www.has-sante.fr/jcms/p_3501799/fr/guides-d-utilisation-des-proms-en-pratique-clinique-courante

5️⃣ FREQUENTLY ASKED QUESTIONS (FAQ)

1️⃣ What is the difference between PROMs and PREMs? PROMs measure health outcomes perceived by the patient (symptoms, quality of life); PREMs measure their experience of the care pathway (communication, access, coordination). The review shows that PREMs remain very much in the minority (3.3% of studies) (p. 10, Finding 3, p. 4).

2️⃣ What exactly is this document trying to establish? To list the variables that can be mobilised to evaluate the impacts of the collection and use of PROMs/PREMs — beyond their mere use. The team honestly states that it has refocused its initial objective (“indicators”) towards “variables” (p. 17).

3️⃣ How many studies, and how were they selected? 60 studies included (52 from databases + 8 by citations), selected from 2,669 documents through a two-step screening on Covidence, with double evaluation and calibration at 90% (p. 8-9).

4️⃣ Which variables are most used in the field? Mainly the use of services: emergency visits, hospitalisations, readmissions, consultations, management of treatments — the category “use of services” being the most comprehensive (Table 2, p. 17).

5️⃣ What data does the measurement rely on? Mainly medico-administrative data (43.9%; 36/82), then questionnaires (30.5%) and interviews (13.4%); qualitative approaches remain little used (p. 19).

6️⃣ Are there structured frameworks to evaluate implementation? Yes, but rarely used: only 12 studies use a tool or framework (CMO, iPARIHS, NASSS, RE-AIM; SROI and Social Value Calculator for economic value; PAM for patient activation) (Table 3, p. 19-20).

7️⃣ Which dimensions remain poorly measured? The economic, experiential, and systemic dimensions: costs, social return on investment, experience, communication, coordination, organisational learning, and governance (Finding 7, p. 5; Conclusion, p. 21).

6️⃣ REWRITING IN PLAIN LANGUAGE

What is this document about?

• PROMs are questionnaires. They ask the patient how they are doing.
• PREMs are other questionnaires. They ask the patient how their care went.
• This document studies a simple question: how can we know if these questionnaires really change care?

What the researchers found

• The researchers read 60 studies.
• Most studies measure things that are easy to count. For example: emergency visits. Or the number of hospitalisations.
• Almost all studies talk about PROMs. Very few talk about PREMs.
• Most studies take place in hospitals. Very few take place near people's homes, in community care.
• Often, the figures come from medical records. They do not come from the patient themselves.

What is still missing

• We poorly measure the experience lived by the patient.
• We poorly measure teamwork and care coordination.
• We poorly measure the cost and value for organisations.

The main advice of the document

• Asking a questionnaire is not enough.
• Before starting, one must know what we want to measure and why.
• Teams must also be trained and the work well organised.

7️⃣ CROSS-ANALYSIS — VALUES OF HEALTH PRACTICES

• Literacy: not directly addressed; the document does not provide tools suitable for levels of understanding, but mentions patient portals and applications as support devices (p. 10).
• Empowerment: partially present through variables of engagement, participation, and patient self-management (category 8, p. 18), but the involvement of patients in the design of the measurement is not documented.
• Participation: poorly addressed; the co-construction of indicators with patients does not appear as a structuring mechanism of the analysed corpus.
• Community health: poorly integrated; the scale remains individual and clinical, with the collective/population dimension identified as a blind spot (Finding 1, p. 3).
• Ethics: the selection biases of the measures (dependence on available data) are identified and discussed (Finding 4, p. 4), which reflects an honest reflexive stance.
• Human rights / equity: the reference to the "triple aim" places equity in the background (p. 6), but the analysis of access or literacy inequalities is not developed.
• Intersectorality: few partnerships outside the healthcare system are mentioned; the focus is on internal interprofessional collaboration.
• Partnership: interprofessional collaboration models are mentioned as a dimension to be better measured, but not formalised as a method.
• Combating discrimination: not explicitly addressed; the document does not mention discrimination or non-judgment mechanisms (theme outside its methodological scope).

8️⃣ EVALUATION OF RESOURCE RELIABILITY

Scientific relevance — strong, with stated reservations. Transparent methodology: rapid review following PRISMA principles, complete flow diagram, two-stage selection on Covidence, double evaluation and calibration at 90%, inclusion period 2015-2025 (p. 7-9). Reservations to note, mostly acknowledged by the authors: (a) this is a rapid review, not a complete systematic review, without formal assessment of the quality of included studies or meta-analysis; (b) languages limited to French and English; (c) refocusing of the objective (“indicators” → “variables”), honestly noted (p. 17); (d) several self-citations from the team to support the discussion on implementation (ref. 72, “accepted for publication”, and ref. 73) — common and stated practice, but worth noting. Recent publication (June 2026), consistent with the state of the field cross-referenced via OECD PaRIS and HAS.

Operational relevance — high. The document provides directly reusable material: a typology of 46 variables in 10 categories and an inventory of evaluation frameworks/tools, usable for designing an evaluation plan. An important operational limitation, which the review itself notes: the very low share of primary care contexts (5.9%) and restricted longitudinal trajectories limit direct transferability to these settings (p. 4, p. 10) — local adaptation remains necessary.

9️⃣ STRATEGIC HASHTAGS

#healthcarepractices #PROMs #PREMs #PatientExperience #PersonCentredCare #HealthEvaluation #PrimaryCare #QualityOfCare

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