Boyce Data Science
Patient Centeredness and Engagement Self-Check
For the patient and stakeholder engagement sections of a research proposal.
How to use this
Answer the questions in each of the six stages. Every answer is checked against a set of conditions drawn from published engagement guidance. Where a condition is not met, the tool posts an observation in that stage and in the summary, states what a reader needs in order to follow the claim, and links to the source of the condition.
Independence. This tool is not affiliated with, endorsed by, or produced by any funder, and it does not reproduce any funder's review criteria, scoring sheet, or reviewer guidance. It cannot predict a funding decision. It is a structured way to check an engagement plan against published guidance.
A note on the word "patient". This tool uses the word "patient" throughout, because that is the word the published guidance uses. Many people with lived experience prefer a different term: partner, contributor, community member, person with lived experience, or the name of the condition itself. Ask the people you are working with which term they use, and use that term in the proposal. Where a form requires a particular word, the narrative can still say which term your partners chose and why.
Saving, printing, and searching the literature
Printing. The Print button in the bar at the top opens a short menu with two choices.
- Everything. All six stages with every question and your answers, the summary, the draft language, any publications you have loaded, and the source list. About 35 pages once the stages are complete. Use it for the complete record in a project binder, or to give the blank questions to a colleague.
- Summary and draft language. Only the parts you would act on: the summary with the per-stage state, every open item with what to add and its source, and the seven draft paragraphs. It leaves out the questions, the partner roster, the publications, and the source table, and runs to about a third of the length. This is the one to bring to a team meeting.
Either choice opens your browser's print dialog, where "Save as PDF" is available instead of a printer. Collapsed sections such as the source list expand automatically before printing.
Saving your work. Nothing is stored anywhere, not on a server and not in your browser, so closing the tab loses your answers. Use "Save answers to a file" to download them as a small JSON file, and "Load a saved file" to bring them back. The same file can be passed to a colleague, who resumes from the same point.
Searching the literature. The Publications section runs a live search of the published literature on patient engagement and patient-centeredness, and exports what you find. It is the one part of this page that talks to another server, and the note in that section says exactly what is sent.
Links. Every link to an outside document opens in a new tab, so you never lose what you have entered.
Who is at the table
Composition is the first thing a reader can check and the hardest thing to fix late. Two questions sit underneath everything in this stage: does the group reflect the range of people the research affects, and is at least one patient partner there in that capacity alone.
Partner roster
Add one row per named partner or per seat you intend to fill. Leave the name blank if the seat is not filled yet and mark the seat as unfilled. The roster drives most of the observations in this stage.
| Name or seat | Category | Another role? | Paid? | Phases | Level | Remove |
|---|
Under Phases: P is planning the study, C is conducting it, D is disseminating the results.
On a narrow screen, scroll the table sideways to reach the phase and level columns.
How the levels of involvement are defined
The four levels come from the Compensation Framework published by the Patient-Centered Outcomes Research Institute, which adapts the IAP2 Spectrum of Public Participation:
- Inform. The team communicates plans to the patient community. Information moves one way.
- Consult. Partners offer opinions, advice, and feedback on something the team has already drafted.
- Collaborate. Decisions are made jointly and actions are taken jointly.
- Partner-directed. Partners set the direction; the team supports independent patient-generated or patient-led work.
A proposal that describes a standing advisory panel and then only ever describes review of finished drafts is operating at Consult. That is a legitimate level. The gap a reader notices is when the narrative uses the word partnership and the described activity is review.
Sources: PCORI Compensation Framework, IAP2 Spectrum of Public Participation.
What this stage shows
Back to topWhen partners join and how long they stay
The Engagement Rubric organizes engagement into three phases: planning the study, conducting the study, and disseminating the study results. A reader traces your partners across all three. Engagement that begins after the research question is fixed, or that stops at enrollment, reads differently from engagement that runs end to end.
What this stage shows
Back to topWhat decisions partners actually make
This is the stage where most engagement plans thin out. A panel is named, a meeting schedule is given, and the route from what the panel says to what the study does is left unstated. The questions here ask you to write that route down: who brings the input, who decides, where the decision is recorded, and when partners are told what changed.
What this stage shows
Back to topWhat is budgeted and what partners are paid
Compensation is where an engagement narrative either agrees with the budget or does not. The Compensation Framework asks for a plan and a related budget for fairly compensating patients, caregivers, and patient organizations engaged as partners, and separates that from reimbursing expenses.
What this stage shows
Back to topSupport, training, and access
The co-learning principle set out in the Engagement Rubric runs both directions: partners learn how research works, and the research team learns how to work with partners. Access sits alongside it, because a meeting a partner cannot attend is a seat that is not filled.
What this stage shows
Back to topHow engagement is measured, evaluated, and reported
Engagement is the part of a proposal most often described and least often measured. This stage links each practice you have committed to with an instrument, a schedule, and a place the result is reported. Named, validated instruments exist and are free to use, so a plan can point at one rather than promise to develop something later.
What this stage shows
Back to topSummary
A stage reads as in progress while questions in it are unanswered, as complete when every condition in it is met, and as open when the stage has items a reader would notice. Conditions are checked only once the questions they depend on have answers, so an unanswered question counts as neither met nor open. The counts are of conditions, not of quality.
Every open item, in the order you would work through them
Summary as a table
| Stage | State | Conditions met | Open items | Still to answer |
|---|
Draft language
These paragraphs are built from your answers. Anything in [square brackets] is a blank for you to complete. Treat the text as a first draft in a neutral register: edit it into your own voice, cut what does not apply, and check every number against your budget and timeline before it goes into an application.
Publications
A live search of the published literature on patient engagement and patient-centeredness, through Europe PMC, which indexes PubMed, PubMed Central, preprint servers, and patents. Start from one of the topics below or type your own terms, then export what you find as a spreadsheet or as a file your reference manager can read.
This section talks to another server. Everything else on this page runs in your browser alone. When you run a search here, the search terms and the filters go to Europe PMC at ebi.ac.uk, which is run by the European Bioinformatics Institute, and the results come back to your browser. Nothing you have entered in the six stages is sent, and nothing you search for is stored by this page.
Start from a topic
Or search your own terms
How the search is built, and what export gives you
With the scope box ticked, your terms are combined with a standing clause covering patient engagement, patient-centeredness, patient and public involvement, patient partners, stakeholder engagement, and community engaged research, so a broad word like impact returns engagement literature rather than everything. Untick it to search the whole database.
Europe PMC query syntax works in the search box, so AUTH:"Staniszewska S",
TITLE:"tokenism", and PUB_YEAR:[2020 TO 2026] all behave as you
would expect. Full syntax is on the
Europe PMC search syntax page.
Export CSV gives a spreadsheet with the title, authors, journal, year, volume, issue, pages, DOI, PMID, PMCID, open-access flag, citation count, links, and the abstract. Export RIS gives a file Zotero, EndNote, Mendeley, and RefWorks all import directly. Copy citations puts a plain reference list on your clipboard. Each exports your selection, or everything loaded if you have selected nothing.
Europe PMC is free and open, and asks for no key. If a search fails, the most likely cause is a network block on your side; the status line will offer the same search on the Europe PMC site so you lose nothing.
Sources
Every condition in this tool traces to one of the documents below. All are publicly available at the time of writing, 6 August 2026. Where a page has moved, the title should still find it.
Full source list
| Source | Publisher and year | What it supplies here |
|---|
Under construction. This is a version 1.0 draft in review. The stages, conditions, and generated language are still being revised.
Patient Centeredness and Engagement Self-Check for Research Proposals, version 1.0, 6 August 2026. Produced by Boyce Data Science. Independent and unaffiliated: this tool is not produced, reviewed, or endorsed by any funder, and it contains no funder's review criteria or reviewer materials. It draws only on documents the publishers have made public. Reproduce or adapt it with attribution.