A Generic Standardised Item Set for remote assessments in people requiring specialist outpatient care: The GeneSIS Project

Background NHS specialist clinics are adopting digital technologies to administer questionnaires remotely to service users who can respond using the internet (e.g. on phones, tablets or home computers).

Commonly, these remote assessment questionnaires (RAQs) include one or more PROMs asking about health status but they can cover a wide range of other topics (e.g. unmet needs, preferences for care, treatment concerns).

Individual questions may be relevant to anyone living with a chronic illness (“generic”) or specific to a certain disease (“disease-specific”).

The Problem At present, question choice is decided by individual NHS services and without explicit guidance or standardisation. RAQ content may vary from one hospital service to another despite treating the same condition. Specialist teams treating different diseases may be seeking very similar information but using different questions.

The amount of variation across the NHS in choice of questions is not known.

Although flexibility is necessary to tailor each RAQ to the particular use-case and condition, unwarranted variation in coverage and question choice is unlikely to deliver effective, efficient, and equitable care.

Better standardisation should ensure the collection of more reliable, valid, consistent patient reported data to drive service delivery, better care and efficient research.

Aims The proposed research is based on the idea that it should be possible to define a minimum core set of common, generic domains and questions that would offer a basic starting point for RAQs intended for routine NHS use - the Generic Standardised Item Set (GeneSIS).

This generic core set could be supplemented flexibly by condition-specific questions, tailored to a particular use-case.

Methods We will bring together healthcare professionals, methodologists and people with lived experience of LTCs (including a PRP panel and participants recruited for focus groups and interviews) to investigate current variation in RAQs across the NHS. We will co-develop a new taxonomy to help describe these questionnaires.

The new system will help us identify commonalities (and differences) in RAQs within, and between, a range of specialities.

Using consensus methods, we will develop a RAQ Toolkit to guide best practice on questionnaire design and implementation (a digital playbook ), and identify a core set of generic themes and questions (the GeneSIS prototype) suitable for use across any LTC.

Finally, using a mixed-methods approach, we will explore how easy it is to apply the toolkit and incorporate GeneSIS in a hospital in selected pathways, and how acceptable it is to patients and staff. The study findings will inform planning for future RCTs.

The views of those with lived experience and the PRP panel who shaped the proposal will contribute throughout the project to ensure our conclusions capture the perspective of patients at every stage of development and validation.

The study team includes methodologists with experience and expertise in taxonomy design, consensus methods, PROMs and core outcome sets.

Impact and dissemination Our research outputs will be shared with patient participants, decision makers and stakeholders across the NHS, impacting on unwarranted variation and promoting better rigour, standardisation and patient involvement in RAQ design and use.