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DRAFT: FOR CONSULTATION

PRIME Centre Wales Invitation to setting its Long Term Conditions Research Priorities for Wales

Date: 10th November 2015Venue: The Priory, Abergavenny

IntroductionIn November 2015 the new PRIME Centre Wales convened a consensus meeting with service users

and individuals from academia, government, statutory and third sector to set its Long Term

Conditions research priorities for Wales (appendix 1 list of participants). There were 34 people in

attendance. The meeting was led by Prof. Joyce Kenkre and Dr Carolyn Wallace (University of South

Wales).

The aim and objectives of the day were:

Aim: To agree the PRIME Centre Wales Long Term Conditions research strategy.

Objectives:• To bring together researchers, representatives from government, local authorities,

commercial sector, third sector, community members and their supporters/carers.

• To identify the research issues, prioritise these and establish how they can be collectively

delivered.

Methodology & MethodA Nominal Group technique was used to develop the agreed research priorities.

This consisted of three phases

Phase one-Private discussions prior to the event. All participants were asked to consult with their

colleagues and bring with them three priorities for research.

Phase two- The face to face interaction with background presentations and consensus workshops to

be reported below.

Phase three- The dissemination and consultation of the findings which will result from this report

into the final document with an action plan for future research development.

The face to face interactionThe background presentations included the following:

Dr Nefyn Williams set the strategy into the context of the new PRIME Centre Wales.

1


o ‘Long Term Conditions and Co-morbidities’ is one of PRIME Centre Wales’ eight work

packages. The primary and emergency care system is characterised by principles

which include person and family centred multidisciplinary care which is often

complex. The challenges of reconfiguring the system require more evidence for

example through systematic review methods, co-production, routinely collected

data, randomised controlled trials and the development of complex interventions.

Dr Dan Venables gave a Welsh Government Perspective.

o Dan introduced the Health and Care Wales Research infrastructure and summarised

Welsh Government primary and social care policy from 2007 to date. This included

‘Designed to Improve Health and the Management of Chronic Conditions in Wales’

to the ‘Social Services and Wellbeing Act’. Health and Care Research Wales vision is

for integrated multidisciplinary, multi-sector research, with an increase on impact,

informing policy and practice.

Dr Judith Carrier identified research gaps in the management of Long Term Conditions.

o People are living longer and living with long term conditions which have a physical,

psychological and psychosocial impact on individuals. However patients continue to

feel that they are not involved in decisions about their care. There is a lot we don’t

know about the management of long term conditions and in particular self-

management. Patients and professionals need further research to support their

decision making.

Rachel Lewis presented Age Alliance Wales research priorities for addressing the needs of

the ageing population.

o Age Alliance Wales is a collaboration of third sector organisations such as Age

Cymru, Carers Trust, Arthritis Care and Disability Wales. They all provide a range of

community based services that reduce the pressure on emergency care services.

Rachel asked all of the organisations for their research priorities and they included

an investigation of transactional costs of systems thinking in relation to delayed

transfers of care, the impact of changes in eligibility criteria, transport, dementia and

sight loss, hospital discharge social care support, building research capacity in stroke

care and age discrimination in health and social care.

Prof. Richard Neale set the PRIME Centre Wales industry perspective.

o Richard highlighted that PRIME Centre Wales will continue to work closely with

Health Research Wales and is committed to undertake work with commercial

2


partners in primary, community and emergency settings. He gave examples of

current work with industry for example developing online training for clinicans

treating older women with breast cancer in collaboration with Smile-on. Other

studies include Johnson and Johnson, GlaxoSmithKilne, Merck, Sanofi-Aventis,

Philips, Plain Healthcare, Medusa Medical technologies, Ortivus and Datix.

There were four rounds of consensus within the structured workshop where participants

undertook the following which resulted in agreed research priorities:

1. Individuals wrote down their three identified key priorities for research on pink paper

provided.

2. They were asked to pair with another person and present their ideas to each other. Then

jointly agree on the most important three ideas out of the six originally presented. They

wrote these three ideas onto the blue paper provided.

3. The pairs were then asked to regroup with another pair of participants (who had completed

the same process) present and discuss their collective six ideas. The four participants were

then asked to narrow the six ideas down and agree three priorities. They wrote these onto

the green paper provided.

4. The four participants regrouped with another four participants who had completed the

same process and further presented and discussed their collective six ideas. As we had three

groups in the previous round this next stage resulted in two groups of 11 people with nine

ideas each. These were negotiated and reduced to three in each group. These were written

onto the yellow paper provided. The results of rounds 1-4 can be found in appendix 2.

5. These six research priorities were transferred onto flip chart paper provided for the next

stages, which were to agree the priorities and rate in order of importance.

6. The two flip chart lists of six priorities were then discussed and through agreement rated in

order of importance. This resulted in the following research priorities.

Agreed Research PrioritiesThe six priorities were considered and negotiated down to five priorities because two priorities in

round four were very similar. Delegates were invited to vote for their top three priorities.

Consequently, the following research priorities were agreed in this order.

1. In patients diagnosed with a long term condition, could a holistic needs assessment facilitate

o Personal goal setting and action plan

3


o Self-monitoring/technologies enabled care

o Medication management

to improve physical/mental function

2. How to improve data sharing infrastructure in all health or social care environments. Using

emerging technology in promoting prudent healthcare and social wellbeing, ensuring that

there is an efficient technological infrastructure in support.

3. Engaging the communities in contributing to their own health and social wellbeing.

4. Engaging practitioners and people with long term conditions in the value of their

participation in generating research evidence and information dissemination.

5. Examine the effects of sensory loss on people with dementia, stroke survivors and their

carers.

Identified Research ThemesThe individual research priorities gathered in step 1 above were analysed into research themes (se

appendix 3). Some of the priorities may be seen as cross cutting a number of themes, for example

‘How can mobile phone technology support people with LTCs to self-manage?’ This could be placed

in both the ‘Self-management’ or ‘Data infrastructure and technology’ themes. For the purpose of

this exercise it has been placed into only one theme and would be a consideration for the

researchers as to how they engage with colleagues who deliver other themes within the strategy.

The identified themes are as follows:

Data sharing infrastructure and technology

Self-management

Interventions and outcomes

Assessment and tools

Sector and service access and transitions

Research Engagement and capacity building

Workforce, roles and community

Action Plan Write up notes of the day

Send out for consultation to those who attended the meeting and to those groups and

individuals who have interest in Long Term Conditions for comment.

During the consultation period

4


o Consult on the research priorities set on the 10th November 2015

o Ask who is currently undertaking research in those areas?

o Ask who wants to be involved in which priority

Ask if a steering group should be developed and how we take this forward?

5


Appendix 1 - List of participantsFirst name Surname Position Organisation SignatureJudith Carrier Senior Lecturer/Co-Director

Postgraduate Studies (Taught)Community Nursing Research Strategy Board

School of Healthcare Sciences, Cardiff UniversityDirector Wales Centre for Evidence Based Care Programme Manager BSc CHNP (Overseas)

James Champion Program Manager, Europe Qualcomm Life

Vera Clement Palliative CareCNS CHILDREN &YP

Cwm Taf UHB

Jayne Cross CCWales

Christopher Davies Service User Involving People

Jan Davies Lay Representative SUCCESS

Justin Davies Solutions Consultant TBS GB

Susan Davies NHS

Ruth Davis Heb Ffin

Robert Harris-Mayes

Lay Member Involving People

Sarah Hicks NHS

Owen Hughes NHS

Hayley Humphries

Head of Governance & Quality

Ty Hafan

Claire Hurlin Head Chronic Conditions Management

Hwyel Dda University Health Board

Janet Ivey NHS

Ceri Jenkins University of South Wales

Chris Jones Project Manager Gwalia

Joyce Kenkre Professor of Primary Care |Associate Director

University of South Wales |PRIME Centre Wales

Carol Killa Director of Care Ty Hafan

Rachel Lewis Manager Age Alliance Wales

Nikki Lloyd-Jones

Senior Lecturer Glyndwr University

Richard Neal Professor of Primary Care Medicine |Director of the North Wales Centre for Primary Care Research; Associate Director, PRIME Centre Wales

Bangor University |PRIME Centre Wales

Rachel North PRIME Centre Wales Cardiff University

6


Ruth Richardson

NHS

Gaye Sheridan Prof Officer BASW

Mostyn Toghill Lay Representative SUCCESS

Alun Toghill Lay Representative Service User Research Partnership

Dan Venables Health and Care Research Wales |Social Care Research Policy Lead

Welsh Government

Carolyn Wallace Reader in Integrated Healthcare and Frailty

PRIME Centre Wales |University of South Wales

John Watkins Consultant in Public Health Medicine

Public Health Wales

Jeanette Wells R & D Manager NHS

Jonathan Whitman Carer

Shirley Whitman Lay Representative |Secretary

SUCCESS |NPC Cymru Wales

Nefyn Williams School of Healthcare SciencesClinical Senior Lecturer and Associate Director NWORTH

PRIME Centre Wales |Bangor University

7


Appendix 2 - Results of consensus workshop rounds 1-4

1) Pink Paper

a) Better communication between doctors & hospital plus other health service of other useful

b) Psychological therapies efficacy/evidence base for self-management

c) Obesity- impact of interventions on long term conditions, quality of life/cost benefit.

d) Early interventions for long term conditions. What is the most effective?

e) Which interventions reduce adverse drug reactions?

f) Which interventions reduce over-prescribing?

g) What is the role of the electronic healthcare records and data-linkage in medicines

management?

h) Information sharing GPs etc.

i) Hospital admissions

j) Research into head injury

k) Information sharing with clinicians etc.

l) Medication- patient healthcare

m) Access to GP surgeries

n) Regular medication

o) Staffing problems in rural west Wales

p) Technology to reduce need for transport

q) Use of IT to support self-care initiatives-engaged patients- better outcomes

r) Validated holistic needs assessment tool to inform care planning

s) Strengthen transition points in the patient pathway (secondary care to primary care) patients

feel vulnerable/unsure when moving through different sectors.

t) Can we evidence the needs of young people with complex conditions (often life limited) are

being recognised within adult services?

u) Does eligibility for adult CHC disempower young people and their families who have previously

had a multi-agency approach to their care within children’s services?

v) A review of adult hospice movement to scope admission criteria, has admission become solely

limited to terminal care? This is a problem for young people who have transferred from

children’s hospice where criteria differ.

w) Using emergency technology to promote wellbeing in all healthcare settings

x) Primary and secondary care clinicians to engage in research

8


y) Increase participant involvement in research.

z) How can we bring all the different voices in community based care together without it leading to

an overly medical response?

aa) What is the role of/how should primary care work with care homes?

bb) How can GPs be encourages to adopt a facilitatory approach that is based on the patient’s

personal goals?

cc) Pain management for long term conditions.

dd) Evaluation tool to look at multiple medications, contraindications, combined side effects.

ee) Early recognition of treatable illness i.e. UTI- before the patient gets confused or falls and has to

be admitted to hospital.

ff) For primary care and emergency /unscheduled care to know its role in, and work at delivery

Welsh Government implementation plan for rare diseases.

gg) For all primary care healthcare staff to be open to considering genetic factors when caring for

individuals and families, promoting partnership working with those who may be expert in the

condition that effects their families.

hh) For primary and emergency care to be forward thinking in considering how genomics is

impacting and will impact practice (for all staff) and to plan accordingly to incorporate these

advances, developing the knowledge and skills to promote personalised care and competent

practice, also sharing best practice.

ii) How to improve self-management skills for people with long term conditions who do not engage

in group therapy (education programme for patients)?

jj) Does communication via technology improve paediatric asthma assessment in primary care?

kk) Do GP prescribed videos improve disease knowledge and diagnosis?

ll) No coordination in standards

mm) No common infrastructure

nn) Too many points of view and pilot studies

oo) Organisation of GP Services- Records, Appointments- Availability

pp) Provision of day centres etc.- fight isolation loneliness as meeting places- socialising

qq) Provision of mental care

rr) Making outpatient appointments that are suitable for the patient-? At reception desk

ss) Research into models of health and social care funding and management which frustrate

prudent healthcare and prudent social care

9


tt) Further research into how models of housing and supported accommodation can support people

with complex health and social care needs.

uu) Research into systems of support for people with chronic conditions which could represent a

kind of consultant facility for people leaving hospital.

vv) Technology enabled care and support across primary/community care.

ww) Self-care/management for LTCs menu of research based options as one size does not fit all.

xx) To encourage people with LTCs to participate in research relevant to them to support improved

care and management in primary care.

yy) Developing Individualised care plans equal partnership working to influence policy.

zz) MDT forum’s with families’ regular focus group sessions to influence research- fluid, ever-

changing service needs.

aaa) Transitional influence for 18 year olds with long term health needs (life limited conditions).

bbb) How can individuals be empowered at point of diagnosis better manage their condition?

Including via use of technology

ccc)Dementia and sight loss/stroke and sight loss.

ddd) Examine the transactional costs of systems thinking- that would help to unpack the

restraints the process puts on innovation.

eee) Culture- wanting and needing change, benefits realisation of a shift in culture

fff) Engagement/people- CCGs, Service Users, Industry-Resource allocation/workforce management-

silo protocols across health boards

ggg) Technology as an enabler- scope solutions- clearly define desired outcomes- in the right

place at the right time- resource, self-management, independence- systems/transfer of data

hhh) Palliative care for patients with non-cancer disease-what’s effective?

iii) How can mobile phone technology support people with LTCs to self-manage?

jjj) What are the views and perceptions of service users regarding group education?

kkk) Assessment and triage of people with LTCs- improving access.

lll) To find and evaluate effective ways of health and social care working together to provide

appropriate packages of care in the community.

mmm) Use of technology to improve multi-sector/multi-disciplinary care in long term conditions.

How can technology best be used- educating professionals- telemedicine/self-management?

nnn) Improving communication between the various parties involved in delivering and receiving

care in long term conditions.

10


ooo) How to deliver long term conditions- workforce capacity building- skill enhancement

including evidence base treatment provision- mobilising community support to ensure

appropriate resource allocation- infrastructure provision to support care programme.

ppp) Strokes- ongoing effect of community care provision and assessment of need.

qqq) How to use technology to improve provisions of care using telemedicine and liaison with

services users with long term conditions.

rrr) Wearable technology to facilitate goal setting and self-monitoring for management of LTCs.

sss) Use of extended scope physios/consulting pharmacists/advanced nurse practitioner substituting

for GPs.

ttt) Shift of focus to assessment of physical function and fitness and mental function routinely in

management of LTCs.

uuu) Barriers to communication NHS-GP-Soc Servs- Amb- Nursing Home.

vvv) IT barriers to use of freely available technology skype- monitoring equipment not limited to

clinics.

www) Influences on decision making for advising patients to stay at home.

xxx)Attitudes of communities towards prudent healthcare as an agenda/approach to living well.

yyy) Investigate the role of paramedics in taking forward the prudent healthcare agenda.

zzz) Is adequate care for elderly in care homes being provided?

aaaa) Why don’t elderly patients have regular eye checks?

bbbb) How are young patients/teenagers with diabetes (T2) being encouraged to self-manage? To

bring together researchers, representatives from government, local authorities, commercial

sector, third sector, community members and their supporters/carers.

cccc) To identify the research issues, prioritise these and establish how they can be collectively

delivered.

dddd) Approaches used in dementia specialist care which help to support individuals in their own

homes longer and maintain continuity of care in community settings

eeee) The workforce skills and competencies required in order to provide timely, responsive care and support closer to home through emerging integrated service models which include enhanced practitioner roles and delegated responsibilities

ffff) Creative commissioning across health and social care which is outcome focussed and meets the needs of greater efficiency and cost effectiveness

11


2) Blue Paper

i) Develop preventative illness intervention including freely available wearable technology

for long term conditions management with healthcare staff to facilitate- self monitoring-

personal goal setting and action plans- shift focus to physical function, fitness of mental

function.

ii) Integrate services and IT systems- primary/community/social care/secondary care.

iii) Substitution of GP with extended scope physio and nurse practitioners/physician

associates and consulting pharmacists.

iv) Use of IT to support patient across the whole patient journey including

self-care/transport/rurality.

v) Can patient education improve patient medication management?

vi) Validated holistic needs assessment tool inform care planning.

vii) Technology enabled care and support across primary /community care.

viii) Self-care /management for LTCs menu of research based options as one size doesn’t fit

all.

ix) To encourage people with LTCs to participate in research relevant to them to support

improved care and management in primary care.

x) Using emergency technology to promote the role of paramedics in taking forward the

prudent healthcare agenda.

xi) Attitudes of communities towards prudent healthcare and self-management.

xii) Engaging clinicians in the value of their participation in generating research evidence.

xiii) Workforce management

xiv) Better use of technology as an enabler and involve service users, care givers.

xv) Identification of good practice and information sharing to avoid duplication and waste

and to improve evidence based practice.

xvi) Research into models of health and social care funding and management to facilitate

prudent health care and prudent social care using various types of supported

accommodation settings and at home.

xvii) Research into effectiveness of day centres and where they have been removed the

effects of isolation and loneliness. People do need places for socialising.

xviii) Research on patterns of support to help people with long term mental health

conditions, such as depression and dementia.

12


xix) To evaluate effective ways of health and social care working together to provide person

centred care in the community.

xx) How can technology nest be used to –enhance self-management in LTC (including

effective use by health/social care professionals)

xxi) How do we improve communication between parties delivering and receiving care in

long term conditions?

xxii)Information sharing across primary care, secondary care, community- How does

communication improve for service users.

xxiii) Psychological interventions effectiveness in early stage of chronic conditions.

xxiv) Obesity interventions impact upon chronic conditions- quality of life- cost /benefit.

xxv)Assessment and triage of people with LTCs to improve access to primary care.

xxvi) Palliative care patients with non-cancer conditions- what’s effective.

xxvii) What are the views and perceptions of service users regarding group education?

xxviii) How can individuals be empowered at point of diagnosis to better manage their

conditions including via the use of technology?

xxix) Research areas are likely to have already been covered by previous pilots and

studies. Why reinvent the wheel?

xxx)Examine the effects of sight loss on people with dementia and stroke survivors.

xxxi) Pain management for long term conditions.

xxxii) Evaluation tool to look at multiple medications, contraindication, combined side

effects (or evaluation of tool if one exists)

xxxiii) Early recognition of treatable illnesses i.e. UTI- before the patient gets confused or

falls and has to be admitted to hospital.

3) Green Paper

a) How to improve data sharing infrastructure in health and social care environments.

b) Engaging clinicians/practitioners/people with LTC in the value of their participation in

generating research evidence.

c) Using emerging technology to promote the prudent healthcare agenda.

d) To evaluate effective ways of health and social care working together to provide appropriate

person centred care in the person’s place of residence (including person’s home, supported

accommodation/settings)

e) How can technology best be used to enhance self-management in long term conditions?

13


f) Investigate effective ways to reduce social isolation looking at alternative options for

socialising.

g) Assessment triage and sharing of information of people with LTCs what’s effective.

h) Obesity interventions and effect on people with LTCs.

i) What are the views and perceptions of service users regarding types of support education-

groups- individuals? Technological interventions?

j) How to improve data sharing infrastructure in all health or social care environments.

k) Engaging clinicians/practitioners/people in LTC in the values of their participation in

generating evidence.

l) Using emerging technology to promote the ‘prudent’ healthcare agenda.

m) Evaluation tool to look at multiple medications, contra-indications, combined side effects

(or evaluation of tool if one already exists).

n) Examine the effects of sensory loss on people with dementia, stroke survivors and their

carers.

o) Research areas are likely to have already been covered by previous pilots and studies. Why

reinvent the wheel?

p) In patients diagnosed with a LTC, could a holistic needs assessment tool facilitate- personal

goal setting and action plans- self monitoring /technologies enabled care- medication

management. –to improve physical/mental function.

q) Securing a sustainable primary care workforce in rural Wales- new ways of working within

the multidisciplinary team.

1. Yellow paper

a. Inpatients diagnosed with a LTC, could a holistic needs assessment tool facilitate-

personal goal setting and action plans- self monitoring /technologies enabled care-

medication management. –to improve physical/mental function.

b. Examine the effects of sensory loss on people with dementia, stroke survivors and

their carers.

c. How to improve data sharing infrastructure in all health and social care

environments.

d. Engaging the community in contributing in their own health and social wellbeing.

e. Using emerging technology in promoting prudent health care in wellbeing. Ensuring

there is an efficient technological infrastructure.

14


f. Engaging clinicians/practitioners/people with long term conditions in the value of

their participation in generating research evidence, education and information

dissemination.

15


Appendix 3 - Identified themes from the Results of consensus workshop rounds 1-4

Theme: Data sharing infrastructure and technology1) Better communication between doctors & hospital plus other health service of other useful

2) What is the role of the electronic healthcare records and data-linkage in medicines

management?

3) Information sharing GPs etc.

4) Information sharing with clinicians etc.

5) Technology to reduce need for transport

6) Using emergency technology to promote wellbeing in all healthcare settings

7) IT barriers to use of freely available technology skype- monitoring equipment not limited to

clinics.

8) Wearable technology to facilitate goal setting and self-monitoring for management of LTCs.

9) How to use technology to improve provisions of care using telemedicine and liaison with services

users with long term conditions.

10) Use of technology to improve multi-sector/multi-disciplinary care in long term conditions. How

can technology best be used- educating professionals- telemedicine/self-management?

11) Technology as an enabler- scope solutions- clearly define desired outcomes- in the right place at

the right time- resource, self-management, independence- systems/transfer of data

12) Technology enabled care and support across primary/community care.

13) Use of IT to support self-care initiatives-engaged patients- better outcomes

Theme: Self-management14) Psychological therapies efficacy/evidence base for self-management

15) How to improve self-management skills for people with long term conditions who do not engage

in group therapy (education programme for patients)?

16

Figure 1: Word cloud of workshop event.


16) How are young patients/teenagers with diabetes (T2) being encouraged to self-manage? To

bring together researchers, representatives from government, local authorities, commercial

sector, third sector, community members and their supporters/carers.

17) How can mobile phone technology support people with LTCs to self-manage?

18) How can individuals be empowered at point of diagnosis better manage their condition?

Including via use of technology

Theme: Interventions and outcomes19) Obesity- impact of interventions on long term conditions, quality of life/cost benefit.

20) Why don’t elderly patients have regular eye checks?

21) Early interventions for long term conditions. What is the most effective?

22) Which interventions reduce adverse drug reactions?

23) Which interventions reduce over-prescribing?

24) Research into head injury

25) Medication- patient healthcare

26) Regular medication

27) Pain management for long term conditions.

28) Early recognition of treatable illness i.e. UTI- before the patient gets confused or falls and has to

be admitted to hospital.

29) Do GP prescribed videos improve disease knowledge and diagnosis?

30) What are the views and perceptions of service users regarding group education?

31) Palliative care for patients with non-cancer disease-what’s effective?

32) Dementia and sight loss/stroke and sight loss.

33) For primary and emergency care to be forward thinking in considering how genomics is

impacting and will impact practice (for all staff) and to plan accordingly to incorporate these

advances, developing the knowledge and skills to promote personalised care and competent

practice, also sharing best practice.

34) Approaches used in dementia specialist care which help to support individuals in their own

homes longer and maintain continuity of care in community settings.

35) Creative commissioning across health and social care which is outcome focussed and meets the

needs of greater efficiency and cost effectiveness

17


Theme: Assessment, care plans and tools36) Validated holistic needs assessment tool to inform care planning

37) Shift of focus to assessment of physical function and fitness and mental function routinely in

management of LTCs.

38) Strokes- ongoing effect of community care provision and assessment of need.

39) Assessment and triage of people with LTCs- improving access.

40) Developing Individualised care plans equal partnership working to influence policy.

41) For all primary care healthcare staff to be open to considering genetic factors when caring for

individuals and families, promoting partnership working with those who may be expert in the

condition that effects their families.

42) Does communication via technology improve paediatric asthma assessment in primary care?

43) Evaluation tool to look at multiple medications, contraindications, combined side effects.

Theme: Sector and service access and provision, organisation and transitions 44) What is the role of/how should primary care work with care homes?

45) Access to GP surgeries

46) Strengthen transition points in the patient pathway (secondary care to primary care) patients

feel vulnerable/unsure when moving through different sectors.

47) Does eligibility for adult CHC disempower young people and their families who have previously

had a multi-agency approach to their care within children’s services?

48) A review of adult hospice movement to scope admission criteria, has admission become solely

limited to terminal care? This is a problem for young people who have transferred from

children’s hospice where criteria differ.

49) Barriers to communication NHS-GP-Soc Servs- Amb- Nursing Home.

50) Culture- wanting and needing change, benefits realisation of a shift in culture

51) Examine the transactional costs of systems thinking- that would help to unpack the restraints

the process puts on innovation.

52) Transitional influence for 18 year olds with long term health needs (life limited conditions).

53) Research into systems of support for people with chronic conditions which could represent a

kind of consultant facility for people leaving hospital.

54) Further research into how models of housing and supported accommodation can support people

with complex health and social care needs.

55) Research into models of health and social care funding and management which frustrate

prudent healthcare and prudent social care

18


56) Making outpatient appointments that are suitable for the patient-? At reception desk

57) Provision of mental care

58) Provision of day centres etc.- fight isolation loneliness as meeting places- socialising

59) Organisation of GP Services- Records, Appointments- Availability

60) No common infrastructure

61) No coordination in standards

62) Improving communication between the various parties involved in delivering and receiving care

in long term conditions.

63) Hospital admissions

64) Is adequate care for elderly in care homes being provided?

Theme: Research engagement and capacity building65) Primary and secondary care clinicians to engage in research

66) Increase participant involvement in research.

67) How can we bring all the different voices in community based care together without it leading to

an overly medical response?

68) For primary care and emergency /unscheduled care to know its role in, and work at delivery

Welsh Government implementation plan for rare diseases.

69) To identify the research issues, prioritise these and establish how they can be collectively

delivered.

70) Too many points of view and pilot studies

71) To find and evaluate effective ways of health and social care working together to provide

appropriate packages of care in the community.

72) MDT forums with families’ regular focus group sessions to influence research- fluid, ever-

changing service needs.

73) To encourage people with LTCs to participate in research relevant to them to support improved

care and management in primary care.

74) Self-care/management for LTCs menu of research based options as one size does not fit all.

Theme: Workforce, roles and community75) Staffing problems in rural west Wales

76) Can we evidence the needs of young people with complex conditions (often life limited) are

being recognised within adult services?

19


77) How can GPs be encourages to adopt a facilitator approach that is based on the patient’s

personal goals?

78) Investigate the role of paramedics in taking forward the prudent healthcare agenda.

79) Attitudes of communities towards prudent healthcare as an agenda/approach to living well.

80) Influences on decision making for advising patients to stay at home.

81) Use of extended scope physios/consulting pharmacists/advanced nurse practitioner substituting

for GPs.

82) How to deliver long term conditions- workforce capacity building- skill enhancement including

evidence base treatment provision- mobilising community support to ensure appropriate

resource allocation- infrastructure provision to support care programme.

83) Engagement/people- CCGs, Service Users, Industry-Resource allocation/workforce management-

silo protocols across health boards.

84) The workforce skills and competencies required in order to provide timely, responsive care and

support closer to home through emerging integrated service models which include enhanced

practitioner roles and delegated responsibilities.

20

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