CASRAI Dictionary

Tag: PPI

  • Capturing research impact: REF case studies, PPI and SDG alignment

    Of all the things the research record tries to capture, impact is the most resistant to counting. A citation is a number; a benefit to a patient, a policy, or a community is a story — and stories travel badly through systems built for tallies. Yet the demand to evidence impact has only grown, from national assessment exercises to funder expectations, and with it the need to represent impact as something more structured than a paragraph in a final report. This article sets out the main frameworks for capturing impact and engagement, drawing on the engagement, impact and SDG domain, and argues that even narrative impact has structure worth preserving.

    The impact case study and the pathway to impact

    The most developed apparatus for evidencing impact is the UK’s Research Excellence Framework (REF), whose impact case study has become a recognised genre in its own right. A REF impact case study is a structured narrative describing a specific instance of REF impact — an effect, change, or benefit beyond academia — underpinned by the institution’s research and evidenced rather than asserted. Its discipline is instructive: it names the non-academic beneficiary, traces the route from the underpinning research to the change, and supplies corroborating evidence. That is a far more rigorous object than a vague claim of influence.

    Upstream of the case study sits the pathway to impact: a description of the planned route from a research output to a non-academic benefit. The pathway is forward-looking where the case study is retrospective, but both share a logic that planning frameworks make explicit. A Theory of Change articulates how a project’s activities are expected to lead to outcomes and impact, treating impact as a chain of reasoning that can be set down and examined, not a happy accident to be claimed at the end.

    Involving the public: PPI, citizen science and co-production

    Impact is rarely something done to a passive public; increasingly it is produced with them, and a precise vocabulary distinguishes the modes of involvement. Patient and public involvement (PPI) — the active involvement of patients and members of the public in the design and conduct of research, prominent in health research — is not the same as recruiting participants. A PPI partner shapes the research; a participant is studied by it. The distinction matters for credit as much as for method, and connects to the recognition of a patient or public partner as a genuine contributor rather than a subject.

    • Citizen science is research conducted in part by members of the public, who contribute observations, classifications, or analysis — a mode that scales participation without conflating it with partnership.
    • Co-production names research conducted jointly by researchers and beneficiaries, where the knowledge produced is genuinely shared rather than extracted, while community-based participatory research (CBPR) treats community members as full partners across the process.

    These are not interchangeable, and a record that flattens them into “public engagement” loses information that matters for both assessment and ethics. The labour involved — knowledge mobilisation, the active translation and movement of research knowledge to its users — is itself a contribution that responsible assessment aims to make visible, the kind of work the authorship conversation has historically rendered invisible.

    SDG alignment: a shared frame for relevance

    Where impact case studies describe particular benefits, the Sustainable Development Goals (SDGs) offer a shared frame for situating research against global priorities. SDG alignment is the mapping of research to one or more of the seventeen United Nations Sustainable Development Goals — from SDG 1 (No Poverty) through SDG 3 (Good Health and Well-being) to SDG 13 (Climate Action) and SDG 17 (Partnerships for the Goals). The appeal of SDG alignment is that it is a vocabulary the whole world already shares: a funder, an institution, and a government can all locate a piece of work against the same seventeen-point frame, which is precisely what a piece of free-text impact narrative cannot offer.

    SDG alignment is powerful exactly because it is a common denominator. The risk is the same as its strength: applied loosely, almost any research can be tagged to almost any goal. Useful SDG metadata records a substantiated relationship, not an aspirational gesture — which is why the alignment, like the impact claim it supports, benefits from being evidenced rather than merely asserted.

    Parallel framings exist in other systems — the EU’s Horizon Europe Mission areas play a comparable role within European funding — and the value in each case is the same: a controlled set of categories that lets relevance be stated comparably across institutions and borders.

    Evidence is the hardest part, and here infrastructure is beginning to help. Policy uptake — documented use of research in policymaking — can be traced through the Overton database, which links scholarly works to the policy documents that cite them. Commercial routes have their own markers: a spin-out company formed to commercialise research, or a technology-transfer licence agreement. Each turns a claim of impact into something an assessor can follow back to its source.

    Why this belongs in a metadata standard

    It is tempting to conclude that impact is simply narrative and therefore beyond the reach of structured metadata. That conclusion is too quick. An impact case study has parts — the beneficiary, the underpinning research, the type of impact, the evidence, the SDG or mission alignment — and those parts can be represented as structured fields linked to the underlying outputs, projects, and people through persistent identifiers. Done that way, an institution can find all its work bearing on SDG 3, a funder can aggregate the beneficiaries of a programme, and a researcher’s engagement and co-production work becomes visible in their record rather than lost in prose. This is the same move that responsible assessment makes when it values contribution and context over a single counted number.

    Where shared vocabulary fits

    The terms here are routinely muddled: involvement is not participation, citizen science is not co-production, SDG alignment is not a free pass to tag anything to anything. A shared, federated vocabulary that defines these precisely — pointing to the REF for the impact case study, to established PPI frameworks for involvement, and to the United Nations for the SDGs — is what lets an impact claim made in one system be understood and compared in another. Supplying that definitional layer is the role the CASRAI dictionary is designed to play.

    What to do now

    For researchers: record impact as it accrues, naming the beneficiary, the mode of involvement, and the SDG alignment, with evidence attached rather than reconstructed at deadline. For institutions and funders: capture impact and engagement as structured, identifier-linked metadata so it can be aggregated and corroborated, not just narrated. For standards work: define the distinct modes of public involvement and the discipline of evidenced alignment, federating to the REF, the SDGs, and established PPI frameworks for the authoritative content.

    Related reading

  • Patient and public involvement (PPI) in health research

    For most of the history of medical research, patients and the public were the subjects of study — the people research was done to, or at best for. The questions researchers asked, the outcomes they measured and the way they ran their studies were decided by professionals, often without consulting the people whose lives the research was meant to improve. The result was sometimes research that answered questions patients did not find important, measured outcomes that did not matter to them, or imposed burdens that could have been avoided had anyone asked. Patient and public involvement — PPI, often extended to PPIE for involvement and engagement — represents a deliberate change in that relationship: research done with patients and the public, not merely on or for them. It belongs within the engagement, impact and SDG domain of the CASRAI Dictionary.

    What PPI is — and is not

    A precise distinction matters here, because the terms are easily confused. Involvement means research carried out with or by members of the public, rather than to, about or for them — people with relevant lived experience actively shaping the research. This is different from participation, which is taking part in a study as a subject (for instance, being a participant in a trial), and different from engagement, which is about sharing information and findings with the public. PPI specifically concerns the active contribution of patients and the public to how research is done: helping decide what questions to ask, advising on whether a study is feasible and acceptable, commenting on the burden it places on participants, shaping how findings are communicated, and contributing to governance and oversight. The premise is straightforward but powerful: people with lived experience of a condition bring knowledge that researchers, however expert, simply do not have, and that knowledge makes research better.

    Why involvement improves research

    The case for PPI is not merely ethical, though it is that; it is also practical. Involving patients and the public tends to make research more relevant, because it is more likely to address questions and outcomes that matter to the people affected. It makes studies more feasible and acceptable, because those with lived experience can foresee practical problems — an unreasonable testing schedule, confusing materials, an outcome measure that misses the point — that professionals might not anticipate. It can improve recruitment and retention, because research designed with participants in mind is easier to take part in. And it strengthens communication, because involving the public helps ensure findings are shared in ways people can actually use. PPI is not a courtesy added at the end; done well, it changes the research for the better from the start.

    Frameworks that guide good PPI

    Because involvement can be done superficially — a single token consultation used to tick a box — the field has developed frameworks to guide genuine practice. In the UK, the National Institute for Health and Care Research (NIHR), building on the long-running work of the body once known as INVOLVE, has been central to embedding PPI in health research. The UK Standards for Public Involvement set out what good involvement looks like across several areas — including inclusive opportunities, working together, support and learning, communications, impact, and governance — giving organisations and researchers a benchmark to plan against and improve towards. The aspiration these standards express is co-production: an approach in which researchers, practitioners and the public work together as equal partners, sharing power and decision-making throughout, rather than the public being consulted at the edges. Co-production is demanding and not always the right model for every study, but it marks the deep end of meaningful involvement towards which the standards point.

    Reporting PPI: the GRIPP2 checklist

    A persistent weakness in the field has been that involvement, even when it happened, was often reported vaguely or not at all — a paper might mention “patients were involved” without saying who, how, or to what effect, leaving readers unable to judge its quality or learn from it. The GRIPP2 checklist (Guidance for Reporting Involvement of Patients and the Public) was developed to address exactly this. It provides a structured set of items for reporting PPI in research papers, prompting authors to describe several things clearly:

    • The aim of the involvement — why patients and the public were involved.
    • The methods — how they were involved, and at which stages.
    • The results — what difference the involvement made to the research.
    • A critical reflection — what worked, what did not, and what was learned.

    By standardising how involvement is reported, GRIPP2 makes PPI visible, assessable and cumulative. It allows readers to judge whether involvement was meaningful, and it lets the field learn collectively what good practice looks like instead of every team starting from scratch.

    Involvement, contribution and impact

    Taking PPI seriously raises a further question that the research community is still working through: how to recognise the contribution of patient and public partners. People who help shape a study contribute real intellectual work, and recognising that contribution — through acknowledgement, through appropriate authorship where warranted, and through fair compensation for their time — is part of doing involvement well rather than extractively. Frameworks for describing contribution, such as the broader thinking explored in our material on authorship and contribution, are increasingly relevant as the community considers how the input of public partners should appear in the record. PPI is also closely tied to research impact: studies shaped by those they aim to help are more likely to produce findings that are used and that make a difference, which is the ultimate concern of the engagement and impact domain.

    A consistent vocabulary for involvement

    For PPI to be planned, reported and recognised consistently across studies, funders and institutions, the terms involved — the stages of involvement, the roles public partners play, the standards being met — must mean the same thing everywhere. That consistency is what the CASRAI Dictionary works towards: a shared vocabulary so that involvement is described and understood the same way wherever it is recorded. And because public partners’ input is genuine contribution, it can be acknowledged within the same framework used for every other — the CRediT taxonomy and its full set of contribution roles. Health research is increasingly something done with the public rather than merely upon them; frameworks like the UK Standards and GRIPP2 are what turn that principle into reliable, reportable practice.