ArticleTherapeutic innovation & regulatory science2018
Assessing the Financial Value of Patient Engagement: A Quantitative Approach from CTTI's Patient Groups and Clinical Trials Project.
Article in Therapeutic innovation & regulatory science, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 87 papers, 2 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
87 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Frameworks for supporting patient and public involvement in research: Systematic review and co-design pilot.Health expectations : an international journal of public participation in health care and health policy · 2019Pooled it
- Impact of patient and public involvement on enrolment and retention in clinical trials: systematic review and meta-analysis.BMJ (Clinical research ed.) · 2018Pooled it
- A report on parent involvement in planning a randomised controlled trial in neonatology and lactation - insights for current and future research.International breastfeeding journal · 2022Trial
- Transforming clinical research by involving and empowering patients- the RATE-AF randomized trial.European heart journal · 2021Trial
- The ACTTION Guide to Clinical Trials of Pain Treatments, part II: mitigating bias, maximizing value.Pain reportsTrial
- Exploring Vocabularies of Motive to Optimise Patient Engagement for Drug Development.Sociology of health & illness · 2026Article
- Engagement in Cancer Epidemiology Cohorts.Cancer epidemiology, biomarkers & prevention : a publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology · 2026Article
- Using Partner-Driven Maximum Variance Sampling to Form a Lived Experience Panel: Step-by-Step Tutorial.Journal of participatory medicine · 2026Article
- Advancing the Science of Patient Input in Drug Research and Development.Journal of participatory medicine · 2026Article
- The patient is now in the room.Nature medicine · 2026Article
- Co-designing a framework to communicate patient-centred outcomes in palliative care: involving patients and the public to reframe understanding.Journal of patient-reported outcomes · 2026Article
- Involving community members in designing behavioural weight management programmes: a scoping review.BMC public health · 2026Article
- Engaging children, adolescents and young adults living with rare diseases as research partners: practical considerations for meaningful involvement.Frontiers in pediatrics · 2026Article
- Authentic content as an effective mechanism for embedding patient voices in health innovation: a hypothesis and conceptual framework.Frontiers in health services · 2026Article
- What approaches are used to facilitate people from under-served communities getting involved with health research? A public contributor led review.Research involvement and engagement · 2025Review
- Patient awareness, involvement, and learning needs in health technology assessment - a survey of patients, caregivers, and patient advocates.International journal of technology assessment in health care · 2025Article
- Digital Health Technologies: Learnings and Perspectives From a Patient Engagement Stakeholder Expectations Matrix Study.Journal of medical Internet research · 2025Article
- Clinical Trial Simulation in Diabetic Retinopathy: Insights from Patients and Site Staff.Ophthalmology and therapy · 2025Article
- Lessons learned from building the kid's trial with an online children's and parents' research advisory group: a descriptive, qualitative study.Research involvement and engagement · 2025Article
- Assessing the Value of Integrated Evidence Approaches in Drug Development.Therapeutic innovation & regulatory science · 2025Article
27 more citing papers are in PubMed but not listed here.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
9 authors.
Funding
Abstract
backgroundWhile patient groups, regulators, and sponsors are increasingly considering engaging with patients in the design and conduct of clinical development programs, sponsors are often reluctant to go beyond pilot programs because of uncertainty in the return on investment. We developed an approach to estimate the financial value of patient engagement.
methodsExpected net present value (ENPV) is a common technique that integrates the key business drivers of cost, time, revenue, and risk into a summary metric for project strategy and portfolio decisions. We assessed the impact of patient engagement on ENPV for a typical oncology development program entering phase 2 or phase 3.
resultsFor a pre-phase 2 project, the cumulative impact of a patient engagement activity that avoids one protocol amendment and improves enrollment, adherence, and retention is an increase in net present value (NPV) of $62MM ($65MM for pre-phase 3) and an increase in ENPV of $35MM ($75MM for pre-phase 3). Compared with an investment of $100,000 in patient engagement, the NPV and ENPV increases can exceed 500-fold the investment. This ENPV increase is the equivalent of accelerating a pre-phase 2 product launch by 2½ years (1½ years for pre-phase 3).
conclusionsRisk-adjusted financial models can assess the impact of patient engagement. A combination of empirical data and subjective parameter estimates shows that engagement activities with the potential to avoid protocol amendments and/or improve enrollment, adherence, and retention may add considerable financial value. This approach can help sponsors assess patient engagement investment decisions.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.