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| Dr Matt Franklin |
This article is archived here
here https://doi.org/10.15131/shef.data.14723685.v1
The project’s
Principal Investigator (PI), Dr Matthew
Franklin (University of
Sheffield), sheds some light on why unlocking routine ‘real-world data’ is
important, and what needs to be taken into account in order to protect and
benefit members of the public - who the data represents. The project ‘Unlocking data to inform public health policy and
practice’ is funded by
NIHR Public
Health Research (PHR) from May 2021 until
February 2022 and will bring together a multidisciplinary team of
researchers, commissioners, clinical directors, analysts, information governance
and legal experts, and members of the public. The project will additionally be provided in kind support by the NIHR Applied Research Collaboration Yorkshire and Humber
(ARC-YH).
The research world is abuzz about the
potential of ‘real-world data’.
Real-world data can take a number of forms; however, we are interested in that
data which could inform commissioning processes, particularly by Local
Authorities (LAs: e.g. City Councils) and Clinical Commissioning Groups (CCGs).
LAs are responsible for commissioning publicly funded social care and, since
2013, some public health services, while CCGs currently fund the majority of
NHS services. The Better Care Fund encourages LAs to work with
CCGs by utilising joint working arrangements including integrated commissioning
boards and pooled budgets. The currently proposed new Health and Care Bill seeks to embed joint
working by making integrated care systems (ICSs) statutory, and both the NHS
and LAs will be given a duty to collaborate with each other, which will replace
existing collaboration duties. Routinely collected administrative and service
activity data is key in supporting LA, CCG, and joint decision-making – this is
our real-world data of interest, as this data is used to determine which
services will be commissioned or decommissioned, with associated impact on
public health within local or regional populations.
Research evidence can support commissioning processes;
however, as stated by the Chief Medical Officer, Professor Chris Whitty:
“research carried out by academics at universities may not
address the public health needs of the local authority where the research is
being conducted. One of the best ways of tackling this issue is through the
co-production of research”.
If local governments are to be engaged as full partners
alongside researchers in the generation and
use of evidence that informs
commissioning decisions, the data and evaluation frameworks they use must be
geared towards their local context and commissioning needs. In particular,
there is a need to:
1.
Identify the data
requirements needed to inform each
stage of the commissioning process, within and across sectors dependent on the
scope of the commissioning decision and where short and long-term costs and
outcomes may fall;
2.
Account for legal and
information governance (IG) frameworks for
sharing and linking data, and providing access to linked data, alongside
broader barriers and facilitators to
access and use of data (e.g. staff skill and capacity, data systems) to help
inform the commissioning cycle;
3.
Establish evaluation
frameworks to enable the data to be
used in a transparent and useful way aligned with what is needed to inform each
stage of the commissioning cycle.
The aim of our project is to delineate the availability and
potential of routinely collected administrative and service activity data to
support commissioning decisions within and across sectors including LAs, CCGs,
and universities, in order to promote and protect health and prevent ill-health
in local and regional settings. We will achieve this aim through four
work-packages (WP1-WP4) and by fostering networks and partnership activities
between academic research and public health practice:
-
WP1: Mapping review of
use and linkage of routine data in local/regional settings for commissioning
decisions informed by LAs in England;
-
WP2: Metadata
specification and pilot metadata catalogue through stakeholder consultation;
-
WP3: Workshops with
stakeholder groups (LAs, CCGs, universities, YHCR) to explore the requirements
of routine data to inform commissioning of services specific to falls
prevention;
-
WP4: Economic
evaluation methods to analyse and present estimates from routine data to inform
cross-sector commissioning of services specific to falls prevention.
Building on examples from the identified grey literature
(WP1), we will develop a metadata specification and pilot metadata catalogue
which could help inform the commissioning process including the legal and IG
frameworks for consideration (WP2). The project will then combine qualitative
methods to further explore the availability and potential of routinely
collected administrative and service activity data to inform commissioning
(WP3), with an exploration of what quantitative methods can be used to maximise
the use of the data to support commissioning-based decision-making and its
value to stakeholders and, subsequently, the public (WP4). Whereas WP1&2
will be a more general assessment of available and potentially available data,
WP3&4 will focus on a case study topic area of current cross-sector policy
relevance (i.e. services specific to falls prevention) in order to help
facilitate and focus discussions, with the generalisability to other
commissioning areas being a point of discussion.
The project has a strong emphasis on the involvement of key
stakeholders throughout, with members of two LAs, two CCGs, and a patient and
public representative involved as co-applicants and embedded in each WP. This
work will explore the benefits of unlocking existing and further data
collection and flows, including its potential use to inform commissioning and
how this connects through to public benefit through better use of economic
evaluation evidence in commissioning decisions. It will initiate more
evidence-based commissioning decisions through utilisation of such routine
data, stimulating joint working across the LA, CCG, and universities, with
support from NIHR infrastructure. Overall, achieving our aim will unlock data to
promote and protect health and prevent ill-health in the Yorkshire and Humber region with learnings for national
change.
For additional information about the project, please email
the PI: matt.franklin@sheffield.ac.uk
About the Author
Dr Matthew
Franklin is a Senior
Health Economist at the School of Health and Related Research (ScHARR),
University of Sheffield. Matt’s interest in real-world data stems from working
through the legal, information governance and technical aspects of using such
data, originally to better inform trial-based analyses. However, more recently
he has begun exploring how to better use real-world data to inform
commissioning-based decision making, particularly in local areas which is
outside his traditional ‘randomised controlled trial’ setting within
non-randomised and ‘natural experiment’ study designs. He is a firm believer in
using economic evaluation evidence to inform resource allocation decision
making when there is a potential opportunity cost in any decision made.
About the Team and Collaborators
The project represents a
collaboration between the Universities of Sheffield, York, and Leeds, Sheffield
City and City of York Councils, Sheffield and Vale of York CCGs, and the
Yorkshire and Humber Care Record (YHCR). Project co-applicants from the
aforementioned include:
-
University of Sheffield:
Tony Stone, Susan Baxter, Annette Haywood, Sue Mason, Anthea Sutton and Mark Clowes;
-
University of York: Sebastian Hinde and James Lomas;
-
University of Leeds: Dan Howdon and Monica
Jones (the latter also associated with
YHCR);
-
Sheffield City Council and Sheffield CCG: Louise Brewins and Michelle Horspool;
-
City of York Council and Vale of York CCG: Jen Saunders and George Scott.
This study/project is funded by the National Institute
for Health Research (NIHR) Public Health Research (PHR) programme (NIHR award
identifier: 133634) with in kind support provided by the NIHR Applied Research
Collaboration Yorkshire and Humber (ARC-YH; NIHR award identified: 200166). The
views expressed are those of the author(s) and not necessarily those of the
NIHR or the Department of Health and Social Care.