The quarterly newsletter for the HEDS group, ScHARR, University of Sheffield.

1. Health
Economics &
Decision
Science.
ScHARR
Also in this issue...
– More PROMS development
– Screening programmes – are they
cost-effective?
– Over 6,500 enroll on MVH MOOC
HEDS Blog
The HEDS blog can be found at
http://scharrheds.blogspot.com
and is kept regularly updated. It is a mine of useful
information for anyone working in the areas in
which we specialise.
@ScHARRHEDS
Visit us at...
www.shef.ac.uk/scharr/sections/heds
Summer 2015 – Volume 10.1
Recovering Quality of Life –
a new PROM specific
to mental health

2. HEDS NEWS Summer 2015 Volume 10.1
Professor Simon Dixon
“In a packed programme tonight
we will be talking to an out-of-work
contortionist who says he can no
longer make ends meet”. And almost
as good as The Two Ronnies, in a
packed newsletter this summer, we
have lots of outcome measurement,
screening programme evaluations
and online resources.
Outcome measurement takes pride
of place, with news on a review of
measures of wellbeing in policy for the
Department of Health, a review of Patient
Reported Outcome Measures (PROMS)
for use in National Clinical Audits, the
development of a questionnaire relating
to immunoglobulin treatment and an
update on the development of a measure
describing the quality of life and recovery
in mental health populations (ReQOL).
Our previous work on heel prick
screening has generated further interest,
with HEDS researchers commissioned
to assess the cost-effectiveness of
including a rare inherited metabolic
disease (ALD) in the NHS Newborn Blood
Spot Screening Programme. We are
also evaluating screening in ovarian and
prostate cancers.
A word from the Director
More information on these and other stories can be found on the online version
of this newsletter www.sheffield.ac.uk/scharr/sections/heds/newsletter
Screening Programmes – Cost-Effectiveness Evaluations
Researchers in HEDS are working on the cost effectiveness of screening programmes in newborns, and in colorectal and
ovarian cancers. This work builds on HEDS’ expertise in evaluating screening programmes, with previous work on prostate
cancer and cervical cancer, amongst others.
Adrenoleukodystrophy (ALD) in the
newborn heel prick screening
The charity ALD Life has commissioned
researchers in HEDS to assess the cost-
effectiveness of including ALD in the NHS
Newborn Blood Spot Screening Programme.
ALD is a rare inherited metabolic disease that
is estimated to affect 1 in 20,000 males. It
affects the nervous system and adrenal glands
and can lead to progressive neurological
disability and death. Studies have shown stem
cell transplantation can improve survival and
quality of life in some patients if conducted at
the very early stages of the disease. The NHS
Newborn Blood Spot Screening Programme
currently tests all babies for nine conditions
including six other inherited metabolic
conditions. For more information, visit
www.sheffield.ac.uk/scharr/sections/
heds/newsletter/heel
Ovarian cancer
Ovarian cancer is the leading cause of death
from gynaecological cancers in the United
Kingdom, with the majority of women
being diagnosed with late-stage cancer.
The United Kingdom Collaborative Trial
of Ovarian Cancer Screening (UKCTOCS)
has enrolled over 200,000 women in an
effort to see if screening for the disease will
reduce mortality via earlier detection. The
HEDS team, led by Professor Chilcott, are
working with the UKCTOCS team to develop
a mathematical model that will take into
account the potential harms and benefits of
screening for ovarian cancer, along with the
costs.
www.sheffield.ac.uk/scharr/sections/
heds/newsletter/ovarian
Colorectal cancer
HEDS researchers are leading an innovative
project to help to improve our understanding
of why some people do not accept their
invitation to be screened for colorectal cancer
(CRC). Within the UK, CRC is the second most
common cause of cancer death. Screening for
CRC can help to reduce the number of deaths
that it causes due to earlier identification
and treatment. This project is aiming to link
data on the uptake of screening to data from
the Yorkshire Health Study (formerly the
South Yorkshire Cohort). www.sheffield.
ac.uk/scharr/sections/heds/newsletter/
colorectal
Eric T Sheler (USAF Photographic Archives)
We have a
report on the
first running of
the Measuring
and Valuing
Health MOOC
(massive open
online course).
It is also worth noting that this MOOC, our
HTA MOOC and the others being planned
are also being remodelled and reused in
our online MSc teaching (International
Health Technology Assessment, Pricing
and Reimbursement) and bespoke online
training for several organisations. If you
are interested in this growing portfolio of
teaching and training, please contact me,
s.dixon@shef.ac.uk
And finally, if you can’t wait for another
six months for the next HEDS newsletter,
keep an eye on the HEDS Blog
(http://scharrheds.blogspot.com) which
has just passed the 4,000 visitors for a
single month for the first time in March.
Our Blog has two or three posts every
week and will keep you informed about
our research projects, papers, conference
presentation and relevant methods and
policy news.
Simon Dixon
HEDS JOBS
HEDS regularly recruit new staff.
For information on jobs, visit
www.sheffield.ac.uk/scharr/vacancies

3. HEDS NEWS Summer 2015 Volume 10.1
Additional PROMS work in HEDS
In addition to ReQoL, HEDS is also involved in introducing Patient Reported Outcome Measures into the National Clinical Audits, in the
development of a questionnaire relating to immunoglobulin treatment and in assessing the use of well-being measures in policy.
Introducing PROMS into the National
Clinical Audits
NHS England is exploring the possibility
of introducing Patient Reported Outcome
Measures (PROMs) into the National Clinical
Audits (NCA) and commissioned a substantive
piece of research through the DH’s Policy
Research Unit in Economic Evaluation of
Health and Care Interventions (EEPRU)
programme. The aim was to investigate
whether a) the EQ-5D is appropriate in the
13 health conditions specified in the 2013/14
NCA programme, b) what measure could be
used when the EQ-5D is not appropriate, and
c) to identify evidence requirements to enable
current NCAs to be used to address questions
of cost-effectiveness and to compare
providers. For more on this story, visit
www.sheffield.ac.uk/scharr/sections/
heds/newsletter/proms
The Burden of immunoglobulin Treatment
Questionnaire
A team in HEDS led by Georgina Jones is
developing a new questionnaire funded by
Baxter Healthcare to measure the burden of
immunoglobulin (Ig) treatment and its impact
upon the quality of life of patients with primary
immunodeficiency (PID).
The aim of this study is to develop the first
PROM to assess the burden of Ig therapy in
patients with PID. The research involves four
stages over 12 months and recruitment has
just started. The team are working closely
with colleagues in the Clinical Immunology
and Allergy Unit in STH, International experts
in PID, Parexel and the International Patient
Organisation for PIDs (IPOPI) during the
development of the questionnaire. For more
on this story, visit www.sheffield.ac.uk/
scharr/sections/heds/newsletter/igbot
Well-being measures in policy
The Department of Health’s Policy Research
Unit in Economic evaluation of Health and
Care interventions (EEPRU) has undertaken
work assessing the use of well-being measures
in policy. There is significant political interest
in the UK on the use of well-being measures,
particularly as they would allow comparisons
across different government departments.
Researchers in EEPRU undertook a conceptual
and empirical comparison of the most
commonly used measures in the UK. Measures
to assess health as well as social care
outcomes were also included in the research.
The results provide the first comprehensive
assessment of commonly used well-being
measures in the UK. For more on this
story, visit www.sheffield.ac.uk/scharr/
sections/heds/newsletter/wellbeing
PROMS work in HEDS
A new measure to assess quality of life and recovery in people with mental health
conditions
The
NHS
is
committed
to
increasing
the
use
of
outcome
measures
to
improve
care
for
people
with
mental
health
problems
(Closing
the
Gap
2014).
It
has
been
recognised
that
the
EQ-­‐5D,
which
is
the
main
generic
measure
used
in
cost-­‐effectiveness
analyses
in
the
UK,
is
not
appropriate
in
many
areas
of
mental
health.
Existing
mental
health
specific
measures
tend
to
be
focused
on
symptoms
rather
than
on
impact
on
quality
of
life.
A
research
team
led
by
John
Brazier
through
funding
from
the
DH
through
the
Policy
Research
Unit
in
Economic
Evaluation
of
Health
and
Care
interventions
(EEPRU)
at
the
University
of
Sheffield,
is
developing
a
generic
patient
reported
outcome
measure
Recovering
Quality
of
Life
(ReQoL),
to
assess
the
Quality
of
Life
for
people
(aged
16
years
and
over)
with
mental
health
difficulties.
ReQoL
may
be
used
across
a
wide
range
of
non-­‐
psychotic
and
psychotic
conditions.
Experts,
service
users,
academics,
clinicians
and
policy
makers
both
nationally
and
internationally
have
been
heavily
involved
in
the
development
of
the
ReQoL
measure.
The
ReQoL
measure
consists
of
seven
themes
that
have
been
identified
from
a
systematic
review
and
interviews
with
service
users.
Autonomy
Control
Choice
Self
Perception
Activity
Hope
Relationships
Belonging
Physical
health
Well-­‐Being
Ill-­‐Being
Included
Partially
included
Not
included
in
EQ-­‐5D
and
SF-­‐6D
HEDS staff at conferences
Our staff regularly present at conferences worldwide. Over the next few months we are attending: ISPOR Philadelphia -
16th-20th May 2015, EAHIL Edinburgh - 9th-12th June 2015, HTAI Oslo - 15th-17th June 2015, Research in the 21st Century Conference
- 19th June 2015, HESG Lancaster - 22nd-24th June 2015, IHEA Milan - 12th-15th July 2015. To see our posters and presentations
from previous conferences, please go to www.shef.ac.uk/scharr/sections/heds/posters
ReQoL: a new measure to assess quality of life and recovery in people with mental health conditions
The NHS is committed to increasing the use
of outcome measures to improve care for
people with mental health problems (Closing
the Gap 2014). It has been recognised
that the EQ-5D, which is the main generic
measure used in cost-effectiveness analyses
in the UK, is not appropriate in many areas of
mental health. Existing mental health specific
measures tend to be focused on symptoms
rather than on impact on quality of life.
A research team led by John Brazier through
funding from the DH through the Policy
Research Unit in Economic Evaluation of
Health and Care interventions (EEPRU) at
the University of Sheffield, is developing the
generic patient reported outcome measure
(PROM) Recovering Quality of Life (ReQoL),
to assess Quality of Life for people with
mental health difficulties. ReQoL may be used
across a wide range of non- psychotic and
psychotic conditions. Experts, service users,
academics, clinicians and policy makers
both nationally and internationally have been
heavily involved in the development of the
ReQoL measure.
The ReQoL measure consists of seven
themes that have been identified from
a systematic review and interviews with
service users.
From a pool of 1600 potential questions from
existing Quality of Life and recovery measure
and interview manuscripts, 61 questions are
being presented to over 1000 service users
across the voluntary, primary, secondary and
tertiary care settings. Psychometrics analysis
will be undertaken to produce the long
version (20-30 items) and the short version
(about 10 items) of the ReQoL measures.
The ReQoL measures will be available for
use from August 2015. ReQoL will be an
instrument for use routinely to assess the
outcomes of interventions in clinical practice,
audit, and monitoring. It will also be available
for use in conducting economic evaluation.
Validation work will start in September
2015 until March 2016. Around the summer
of 2016, it is expected that the valuation of
the ReQoL questionnaire will be complete
with preference weights available for the
calculation of Quality Adjusted Life Years.
For further information on this
project visit
www.reqol.org.uk

4. Short Courses
Dates Name of Course Course Content
8 June 2015 A Guide to Doing Mixed Methods
Studies in the Health Sciences
The course undertakes the process a mixed method study. The focus will
be on health research, particularly health care research.
25 June 2015 The Identification and Review
of Evidence to Inform Cost
Effectiveness Models
The course will enable participants to develop an understanding of the
methods available for the identification and review of evidence to inform
cost effectiveness models.
24-26 August 2015 Evidence Synthesis of Qualitative
Research in Europe (ESQUIRE)
The course will follow the systematic review process as it applies, and is
adapted to, qualitative evidence syntheses.
9 September 2015 Remixing Research – methods for
increasing and measuring your
scholarly output on the web
The aim of this short course is to guide delegates through the many tools
that are available to help you maximise and measure the reach of your work,
whether that be publications, presentations, posters, data or ideas.
11 November 2015 Rapid Review Methods Rapid reviews use methods that accelerate or streamline the traditional
systematic review processes in order to facilitate timely decision making.
23-27 November 2015 The Application of Psychometrics
for Health Measurement (basic to
Intermediate)
This interactive and practical course will introduce participants to
psychometrics used in scale construction and the development of multi-item
patient-reported outcome measures (PROMs).
Further details and booking information can be found on our website www.shef.ac.uk/scharr/shortcourseunit
MSc Courses
• MSc International Health Technology Assessment, Pricing & Reimbursement
• MSc Health Economics & Decision Modelling
• MSc Economics & Health Economics
For information on all masters courses, visit
www.sheffield.ac.uk/scharr/prospective_students/masters
ScHARR – ranked 4th in the power list of UK Health Research
The results of the 2014 Research Excellence Framework (REF) have confirmed ScHARR’s
position in world-leading health research.
An analysis of the results published by the Times Higher Education magazine ranked ScHARR,
HEDS’ University Department, as 4th in the UK for “power” (ahead of Oxford, Cambridge, and
Imperial College London), which is a combination of research quality and the volume of our
research.
Over 6,500 register for HEDS’ MOOC on Measuring
and Valuing Health
In February 2015, HEDS launched a new MOOC (massive online open
course), in partnership with Future Learn, on Measuring and Valuing
Health. MOOCs are free courses available to anyone with internet
access. 6,545 learners signed up to join us from all over the world
including patients, health care professionals, academics, lay interested
people, and policy makers.
The course ran for three weeks and was based around introducing
Patient Reported Outcome Measures (PROMS) and Quality Adjusted
Life Years (QALYs). MOOCs are delivered one step at a time in bite
sized pieces and are accessible on mobile, tablet and desktop, allowing
learners to study at their own pace and at their leisure.
Teaching comprises a mixture of videos, interactive exercises, articles,
quizzes and discussion boards.
Many learners commented on how much they enjoyed the course, in
particular joining in discussions such as whose values we should use
to value health and having a go at health state valuation exercises and
comparing results with other learners.
The course also showcased the research of HEDS, including the SF-6D
and the CHU9D and many of our staff contributed to the videos.
If you missed the course first time round, we will be running it again.
For more on this story, visit
www.sheffield.ac.uk/scharr/sections/heds/newsletter/mooc_
value_health
You can also follow the conversation here #FLValuinghealth
Katherine Stevens, John Brazier, Clara Mukuria and Donna Rowen, educators on the Utilities MOOC
Feedback HEDS would
appreciate your feedback on this
newsletter. Please email:
hedsnewsletter@sheffield.ac.uk
We look forward to hearing
from you.