Making the Case for Improving Information
for the Public in Wales Conference
Cardiff Metropolitan University, 18th
September 2014
This is the conference report sponsored by the Patient Information
Forum, Public Health Wales and Macmillan Cancer Support.
1
Contents
1. Executive summary
2. Background
3. Report of the day
4. Workshop findings
2
Executive Summary

The conference attracted a wide range of delegates from health boards, trusts and national
programmes across Wales, Government, Third Sector, Community Health Councils and a
diverse range of other organisations. There was widespread consensus about the case for
improving patient information in Wales as a fundamental healthcare activity, as well as
significant agreement around the next steps that should be taken in the workgroup
sessions.

The case for the impact of high quality information and support on improving outcomes,
reducing costs and giving people a better experience of care was clearly made.

Despite the clear fit of high quality information with key policy agendas such as CoProduction and Prudent Healthcare, significant evidence demonstrated that there are
currently particular issues around the co-ordination, production and delivery of patient
information in Wales.

The Minister, in his keynote address, added further weight to the case for improving patient
information by stressing information’s key role in supporting the development of ‘prudent’
patients and the importance of making the best use of all resources.

The morning workshop sessions focussed on three key practical areas for improvement
namely quality, delivery mechanisms and workforce with delegates being asked to consider
what steps were required and who should lead change. There was significant agreement
across key themes emerging from these groups which proposed:
 A national, holistic approach to health and wellbeing information bringing together
third sector and health board resources minimising duplication and supported by
Welsh Government policy and strategy
 An NHS Wales centralised bank of high quality information materials
 Exploration of quality standards and a potential kite mark which prioritises
accessibility of information, so that healthcare professionals and the public can easily
identify high quality information
 Consideration of how health information should be performance managed and
included in annual quality statements
 Training to enable frontline staff to signpost to the national trusted resource.
3
 The promotion of a changing organisational culture which views information as core
healthcare activity and highlights workforce responsibility in relation to this issue.
 Recognition of the importance of information needs assessment skills and a national
approach to training healthcare professionals to support clinical co-production with
the sharing of good practice and the development of a community of practice.

The afternoon workshop sessions began to examine a potential vision for patient
information in Wales focussing on three key points in the information journey – prevention,
diagnosis and aftercare. Feedback from the workshops included the following:
 The prevention workshop stressed the need to focus on the strength of communities in
terms of understanding what people need and supporting people to make changes and
the importance of the right information at the right time to meet need.
 The diagnosis and treatment workshop stressed the importance of healthcare
professionals and the public working in partnership and the key role of information in
enabling a more balanced relationship which takes a holistic view of patients as more
than their condition. The group also stressed the importance of My Health Online and
care plans in enabling patients to take ownership of their condition and regain a level of
control.
 The aftercare groups focussed on the need to create a ‘toolkit of information’ that moves
beyond NHS involvement and the importance of healthcare professionals as
‘infomediaries’ helping people to navigate the healthcare system so that they will know
how to find support in the future. A key outcome continuously stressed was ‘I feel I have
the information I need’.
There was wide scale recognition that the conference and the workshops were only a
starting point and to truly have value and meet outcomes the vision for improving the
provision of information for the public must be co-produced with them. The potential of
working with Co-Production Wales and other organisations to achieve this should be
explored.
4
Background to the event
The Patient Information Forum (PIF) is the UK association for professionals that work in the field of
consumer health information. PiF campaigns to ensure that consumer health information is
central to high quality, patient centred care and helps providers to develop high quality information
for their patients and the public. It is a non-profit, independent organisation with members in all
healthcare sectors and in every country in the UK. PiF last hosted a conference in Wales in 2007
which was supported by NHS Direct Wales.
The 2014 conference was jointly organised by Public Health Wales and the Patient Information
Forum with support from Macmillan Cancer Support as a timely opportunity to raise awareness of
the importance of high quality health information and support for the public and to share best
practice from Wales and other nations. Access to high quality health information is a pre-requisite
for delivering excellent care, the co-creation of health, and achieving a good patient experience in
Wales. The event sought to bring together experts in the field of health information with Welsh
stakeholders to identify key actions that will help turn this rhetoric into reality for patients and the
public.
This report provides an executive summary of key findings from the day and is intended to be
shared widely with stakeholders.
5
Report of the day
The conference attracted significant interest from a wide range of stakeholders including Welsh
Government (self care team, Cymal, Digital Health, Health Statistics, health strategy), Local Health
Boards (nursing, patient experience, 1000 Lives Improvement, Screening, Equalities), the Welsh
Local Government Association, Healthcare Inspectorate Wales, Community Health Councils and a
number of large third sector organisations. 73 attendees attended the event with the following
breakdown.
Government/ Local
Authority
11
Local Health
Board and
Trusts
39
Third Sector
Community
Health Councils
Other
15
4
4
Event format
The conference was chaired by Professor Sir Mansel Aylward, Chair of Public Health Wales and
the Bevan Commission. In his opening comments, Professor Sir Mansel set the scene for the day,
highlighting the key role of health information for the public in underpinning a prudent approach to
healthcare. There followed a series of key presentations which included
Claire Murray, Patient Information Forum
Claire discussed the findings of the PIF funded ‘Case for Information’ report. This research report
highlights how providing information to patients and their carers improves outcomes, reduces
costs and gives people a better experience of care. The project, which looked at over 300 studies,
found that there are good business reasons to justify the investment of more time, money and
training in health information provision and support. These include positive impacts on service use
and costs, substantial capacity savings, and significant returns on investment by increasing shared
decision-making, self-care and the self-management of long-term conditions. The full report can
be accessed at
http://www.pifonline.org.uk/the-case-for-information-investment-in-patient-information-improvesoutcomes-and-reduces-costs/
Dr. Julie Bishop, Consultant in Public Health, Public Health Wales and Susan Morris,
General Manager, Macmillan Cancer Support
Susan and Julie shared learning from the Macmillan Cancer Patient Information Strategy Project –
a partnership project between Macmillan and Public Health Wales exploring how we can offer
tailored information and support to people with cancer form the point of diagnosis onwards. The
first stage of the project involved a detailed needs assessment and evidence review. The work
revealed the centrality of high quality patient information and support to good patient experience,
self care and the co-creation of healthcare. Yet despite its importance, the project is concerned
6
that patient information often appears low profile with little dedicated resource – a nice to do rather
than core healthcare activity. The project is calling for a vision, strategy and work programme to
be put in place underpinned by four key areas – shared content, delivery mechanisms, and
workforce and quality standards.
The Minister for Health and Social Services, Professor Mark Drakeford AM
The Minister provided the keynote address for the day which focussed on the importance of
information for ‘prudent patients’ as a key driver underpinning the co-production agenda. The
Minister highlighted the value of trusted brands in relation to information production such as
charities and the need to look at an NHS Wales approach. He also stressed that in a world
dominated by information, often the issue is explanation rather than information per se.
Workshop sessions were subsequently hosted in the morning and afternoon to explore key
elements of patient information provision and begin to create a vision for a patient journey.
The afternoon session also included a presentation from NHS 24 Scotland.
Kevin Hutchison, Macmillan National Information Strategy Manager and Louise Bennie,
General Manager for Health Information Services
Kevin and Louise shared their experience of developing health and care information services in
Scotland. In a highly interactive session, they described the policy levers and cultural drivers
which underpin their work, current structures and content management systems and outlined the
future vision for health information in Scotland.
The event closed with a plenary session which offered the opportunity to discuss the key issues
raised on the day and next steps.
A full agenda can be found in appendix A. Web addresses for all organisations referred to in this
report can be found in appendix B.
7
Summary of workshop sessions
Morning workshops
The morning workshop sessions focussed on three key areas for change – quality, delivery
mechanisms and workforce. There was significant consensus around key themes explored in
workshops.
Quality
The quality workshop explored what high quality information means to us. It began with a short
presentation from Public Health Wales Screening Division on their approach to producing
information for the public. During the remainder of the session the group discussed how we
currently ensure health information for the public in Wales is high quality, if there is appetite for a
Wales approach to ensuring quality and if so how we might deliver this.
Key themes explored in the session included:
 High quality information is information which improves the health of the population, is
reliable, accurate, trustworthy, consistent, up to date and accessible to all. It should
be available in easy read, plain English and clear Welsh and should be soundly
evaluated at production and review. The value of trusted brands was acknowledged.
 There was significant appetite for a more consistent approach to ensuring quality of
health information given concerns that there are not sufficient resources at individual
health board and trust levels to provide the highest quality information possible.
 The following proposals were suggested;
 An NHS Wales centralised bank of high quality information materials to be
commissioned and, or, driven and supported by Welsh Government, using the
skills and resources from across Wales
 Exploration of quality standards and a potential kite mark to enable healthcare
professionals and the public to easily identify high quality information
 The Health and Social Services Minister to establish a national project group to
develop a framework with representation from third sector, independents,
national organisations, patients, NHS representatives, and service users.
 Need to ensure health information is closely monitored and accorded priority
status. Links with annual quality statements should be explored.
8
Delivery mechanisms
The delivery mechanisms workshop explored the delivery mechanisms that should be in place to
ensure the delivery of high quality information to the public in Wales. The session began with a
short presentation from NHS Direct Wales. During the remainder of the session, the group
discussed what mechanisms are currently in place in Wales, what needs to be developed and
improved, how this could practically be delivered and what are the opportunities and challenges.
Key themes explored in the session included:

There is a range of existing delivery mechanisms in place such as NHS Direct Wales,
Dewis Citizens’ portal, self management courses, third sector but there appears to be
significant duplication and variation and it can be challenging for people to navigate all
these systems. Delivery needs to be co-ordinated and person-centred and supported by
Welsh Government policy and strategy.

A central information hub is required to ensure sharing of good practice, consistency and
high quality accurate information.

Information interventions should be built into care plans, treatment and diagnosis plans and
healthcare professionals supported to signpost patients to the national resource.

A holistic approach to health and wellbeing information should be taken which brings
together third sector and health board resources and includes a directory of services.
Workforce
The workforce workshop explored the ramifications of a greater focus on supporting people to
access high quality information for the health and social care workforce. The session began with a
short presentation from 1000 Lives Improvement. In the remainder of the session the group
particularly considered how we are already addressing this need in Wales and what skills and
competencies will be needed by healthcare professionals and patients looking to the future.
Key themes explored in the session included:

The need for prudent interactions by health care professionals focusing on the individual
needs and goals of patients and using decision aids, group consultations and maximising
the use of digital media. These should build on existing evidence around the effectiveness
of joining shared decision making and self management support under one skill set to
deliver clinical co-production.

The need to promote a changing organisational culture which views timely information
giving as core healthcare activity and highlights workforce responsibility in relation to this
issue.

Recognition of the importance of information needs assessment skills and a national
approach to training and support for health care professionals with the sharing of good
practice and the development of a community of practice.
9

The importance of practical training to enable frontline staff to signpost to high quality
resources.
Afternoon Workshop Sessions
The afternoon workshops sessions focussed on creating a vision for what a perfect information
journey might look like if the all the correct elements were in place. This is a task that was
undertaken by the Patient Information Forum to support the Futures Forum’s workshops which
informed the Department of Health Information Strategy. The information journey has three
components – prevention, treatment and diagnosis and aftercare and significant commonality of
themes emerged from these groups as described below.
Prevention

The importance of focus on individual needs with relation to information and ensuring it is
available at the right time and in the right format to meet needs.

The need to value community assets and the role of peers and networks in relation to
information provision.

Ensuring that people are able to take ownership and play an active role in their healthcare
through tools such as the ‘red book’.
Treatment and diagnosis

The importance of healthcare professionals and the public working in partnership and the
key role of information in enabling a more balanced relationship.

The role of information in supporting patients to take ownership of their condition and regain
a level of control and fit between patient information and hand held patient records and
other services such as My Health Online.

The need for information to be tailored to meet individual preferences.
Aftercare

The role of healthcare professionals as ‘infomediaries’, helping people to navigate the
healthcare system so that they will know how to find support in the future and help
themselves, recognising that information needs will change over time.

Recognition of the role of communities, networks and peers in relation to information
provision and the need to look beyond NHS involvement to a more holistic model.

The individual nature of information provision and importance of ensuring the right
information at the right time. A key outcome continuously stressed was ‘I feel I have the
information I need’.

The role of information in creating a more balanced relationship between healthcare
professionals and patients.
10
Making the Case for Improving Health
Information for the Public in Wales
Thursday 18th September 2014
Cardiff Metropolitan University, Llandaff
9.30-10.00
Registration and Coffee
10.00-10.15
Welcome and Scene Setting
10.15-10.35
Making the Case for Information
10.35-11.00
Learning from the Macmillan Cancer Patient
Information Strategy Project
11.00-11.30
Keynote address by the Minister for Health
and Social Services
Coffee
Workshop Session 1
Quality – Red breakout room (0.18)
11.30-11.45
11.45-12.45
Delivery Mechanisms – Blue breakout room
(0.20)
Professor Sir Mansel Aylward CB, Chair of Public
Health Wales
Sue Farrington, Chair of the Patient Information
Forum
Susan Morris, General Manager, Macmillan
Cancer Support, Wales
Dr Julie Bishop, Consultant, Public Health Wales
Professor Mark Drakeford AM
Dr.Sikha de Souza, Screening Services
Delivery Mechanisms – Leanne Hawker and
Fiona Maclean, NHS Direct Wales
Workforce – Mike Spencer,1000 Lives Plus
12.45-13:45
13:45-14.45
Workforce – Green room- hospitality suite
Lunch
NHS 24 Health Information Services – A
Scottish Perspective
Kevin Hutchison, Macmillan National
Information Strategy Manager, NHS 24
Louise Bennie, General Manager for Health
Information Services, NHS 24
14.45-15:00
15:00-16:00
Tea break
Workshop 2 – Designing the Perfect Patient
Information Journey
16:00-16:30
Closing session and plenary
Group 1 – Green room - Hospitality Suite
Group 2 – Red Breakout room (0.18)
Group 3 – Blue Breakout room (0.20)
Professor Sir Mansel Aylward CB, Chair of Public
Health Wales
11
Appendix B
Making the Case for Improving Information for the
Public in Wales Conference
Cardiff Metropolitan University, 18th September
2014
Organisation web details
Patient Information Forum www.pifonline.org.uk
Public Health Wales http://www.publichealthwales.wales.nhs.uk/
NHS Direct Wales http://www.nhsdirect.wales.nhs.uk/
Macmillan Cancer Support http://www.macmillan.org.uk
NHS 24 Health Information Services Scotland http://www.nhs24.com/
The organisers would like to thank everyone for their post conference
feedback which will be used to help inform future events
12