Kenkre, Joyce

Wallace, Carolyn

Williams, Nefyn

English

This document is the Long Term Conditions research strategy for PRIME Centre Wales. In November 2015 PRIME Centre Wales convened a consensus meeting at The Priory, Abergavenny with service users and individuals from academia, government, statutory, third sector and industry to set its Long Term Conditions research priorities for Wales (appendix 1). There were 34 people in attendance. The meeting was led by Prof. Joyce Kenkre and Dr Carolyn Wallace (University of South Wales)

University of South Wales Research Explorer

	www.primecentre.wales										Long	Term	Condition	Research	Strategy	June	2016	Joyce	Kenkre,	Carolyn	Wallace,	Nefyn	Williams		 	Social	Care	Research	Strategy			www.primecentre.wales	2	Introduction	This	document	is	the	Long	Term	Conditions	research	strategy	for	PRIME	Centre	Wales.	In	November	2015	PRIME	Centre	Wales	convened	a	consensus	meeting	at	The	Priory,	Abergavenny	with	service	users	and	individuals	from	academia,	government,	statutory,	third	sector	and	industry	to	set	its	Long	Term	Conditions	research	priorities	for	Wales	(appendix	1).	There	were	34	people	in	attendance.	The	meeting	was	led	by	Prof.	Joyce	Kenkre	and	Dr	Carolyn	Wallace	(University	of	South	Wales).	Policy	Context:		There	are	estimated	to	be	800,000	(27%)	of	the	population	in	Wales	who	have	at	least	one	chronic	condition.		It	is	acknowledged	that	the	prevalence	of	chronic	conditions	increases	with	age	and	it	is	predicted	by	2026	32%	of	the	population	will	be	aged	65	or	older	(Wales	Audit	Office	2014).	Thus	demonstrating	the	urgent	need	to	address	prevention,	future	management	and	provision	of	services.	The	Welsh	Government	(WG),	under	the	umbrella	of	Together	for	Health	published	a	series	of	policy	documents	to	address	a	range	of	chronic	conditions	(WG	2011,2012a,2012b,2013a,	2013b,	2014	).	The	Management	of	Chronic	Conditions	in	Wales	–	an	update	(2014)	showed	that	progress	has	been	made	by	patient	education	for	self-	management,	increased	budgets	resulting	in	more	nurses	working	in	the	community.	Unfortunately,	the	improvement	has	not	been	universal	resulting	in	unmet	needs	which	require	attention	for	more	effective	care,	identification	of	risk	and	the	prevention	of	unnecessary	unplanned	admissions	(Wales	Audit	Office	2014).	These	issues	and	many	more	can	be	addressed	by	the	conduct	and	evaluation	in	the	communities	of	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.		 	Social	Care	Research	Strategy			www.primecentre.wales	3	Methodology	&	Method	A	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	interaction	The	background	presentations	included	the	following:	• Dr	Nefyn	Williams	set	the	strategy	into	the	context	of	the	new	PRIME	Centre	Wales.	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	within	its	law	and	policy	context	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	paucity	of	information	about	the	management	of	long	term	conditions	and	in	particular	self-Social	Care	Research	Strategy			www.primecentre.wales	4	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.	These	organisations	provide	a	range	of	community	based	services	that	reduce	the	pressure	on	emergency	care	services.	Rachel	Lewis	asked	all	of	the	organisations	for	their	research	priorities	which	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	Neal	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	partners	in	primary,	community	and	emergency	settings.	He	gave	examples	of	current	work	with	industry	for	example	developing	online	training	for	clinicians	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	Social	Care	Research	Strategy			www.primecentre.wales	5	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	there	were	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.		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	Priorities	The	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. 						To	improve	physical/mental	function	in	patients	diagnosed	with	a	long	term	condition,	could	a	holistic	needs	assessment	facilitate	o o			Personal	goal	setting	and	action	plan	o o			Self-monitoring/technologies	enabled	care		o o			Medication	management	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	carer’s.				 	Social	Care	Research	Strategy			www.primecentre.wales	6	Identified	Research	Themes	The	individual	research	priorities	gathered	in	Step	1	above	were	analysed	into	research	themes		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	Consultation	Period	The	draft	documentation	was	distributed	to	all	participants	and	to	a	wide	selection	of	those	who	were	not	able	to	attend	on	the	day.	Those	additional	organisational	representatives	who	responded	have	been	included	on	the	participant	list	in	appendix	1.	The	consultation	period	occurred	from	15th	December	2015	until	25th	January	2016.	Consultation	Questions	• Question	1:	Do	you	agree	with	the	content	of	the	consultation	document?				• Question	2:	Are	there	any	disparities?																																																																						• Question	3:	Are	you	currently	leading,	or	undertaking	research	in	any	of	the	themes	or	priorities	identified	in	the	document?			• Question	4:	Are	there	any	areas	of	research	you	would	like	to	take	forward	which	are	identified	in	the	document?					• Question	5:	Should	we	develop	a	steering	group	to	take	this	strategy	forward?					• Question	6:	Are	there	any	further	suggested	actions	you	would	like	to	add?				Respondents	to	the	draft	document	commented	that:	• It	was	an	accurate	record	of	the	day’s	activities.		• Very	interesting,	was	adult	focused.	However,	importantly,	that	said	the	areas	for	research	selected	are	equally	appropriate	for	third	sector	in	children’s	services.	• Reassured	that	the	emerging	themes	distinguished	between	service	priorities	and	research	priorities.	• Specific	interest	was	shown	in	the	wider	use	of	Digital	opportunists	and	Telemedicine	as	an	economical	way	to	improve	health	management	services	and	improve	interactions	between	patients	and	all	health	support	services	-	from	GP	to	Social	Care.		Social	Care	Research	Strategy			www.primecentre.wales	7	• Volunteers	for	future	involvement	were	received	from	the	third	sector	and	lay	representation.	Particularly	in	themes	such	as	data	sharing	infrastructure	and	technology.		• Further	suggested	actions	included	a	request	to	ensure	a	good	standard	of	feedback	between	PRIME	researchers	and	participating	service	users.			Next	steps	for	PRIME	Centre	Wales	Long	Term	Conditions	Research	• Develop	a	steering	group	to	take	the	research	strategy	forward.	• Identify	people	who	are	currently	working	within	the	research	themes.	• Disseminate	ideas,	information	on	funding	opportunities,	research	training	and	research	outputs.	• Apply	for	funding	grants	for	key	areas	including	studentships.			 	Social	Care	Research	Strategy			www.primecentre.wales	8	Appendix	1	-	List	of	participants	First	name	 Surname	 Position	 Organisation	 Signature	Judith	 Carrier	 Senior	Lecturer/Co-Director	Postgraduate	Studies	(Taught)	Community	Nursing	Research	Strategy	Board	School	of	Healthcare	Sciences,	Cardiff	University	Director	Wales	Centre	for	Evidence	Based	Care	Programme	Manager	BSc	CHNP	(Overseas)	√	James	 Champion	 Program	Manager,	Europe	 Qualcomm	Life	 √	Vera	 Clement	 Palliative	Care		CNS	CHILDREN	&YP	Cwm	Taf	UHB	 √	Community	Nurse	research	Network	Jayne	 Cross		 Workforce	Development	Officer	 Care	Council	for	Wales	√	Christopher	 Davies		Service	User	 Involving	People	 √	Jan	 Davies		Lay	Representative	 SUCCESS	 √	Justin	 Davies	 Solutions	Consultant	 TBS	GB	 √	Susan	 Davies		Primary	Care	Development	Manager	 ABMU	√	Ruth	 Davis			 Heb	Ffin		 √	Robert	 Harris-Mayes		Lay	Member	 Involving	People	 √	Sarah	 Hicks		 Clinical	Lead	for	Telehealth	 Hywel	Dda	University	Health	Board	√	Karen	 Hodson	 Programme	Director	MSc	in	Clinical	Pharmacy	Cardiff	University	 	Owen	 Hughes		 Consultant	Psychologist	 Powys	Teaching	Health	Board	√	Hayley	 Humphries		 Head	of	Governance	&	Quality	 Ty	Hafan		√	Claire	 Hurlin	 Head	Chronic	Conditions	Management	Hwyel	Dda	University	Health	Board		√	Janet	 Ivey	 Head	OT	 Cwm	Taf	UHB	 √	Ceri		 Jenkins			 University	of	South	Wales	 √	Chris	 Jones		Project	Manager	 Gwalia	 √	Joyce	 Kenkre	 Professor	of	Primary	Care	|	Associate	Director	/	Chair,	Community	Nursing	Research	Strategy	Wales	Board	University	of	South	Wales	|	PRIME	Centre	Wales	√		Carol	 Killa	 Director	of	Care		Ty	Hafan	 √	Rachel	 Lewis	 	Manager		Age	Alliance	Wales	 √	Gerrard	 McCullagh	Clinical	Lead	Eating	Disorders	Service	 ABUHB		Nikki	 Lloyd-Jones	 Senior	Lecturer	 Glyndwr	University	 √	Social	Care	Research	Strategy			www.primecentre.wales	9			 		Richard	 Neal	 Professor	of	Primary	Care	Medicine,	Director	of	the	North	Wales	Centre	for	Primary	Care	Research;	Associate	Director,	PRIME	Centre	Wales	PRIME	Centre	Wales	,	Bangor	University		√	GP	Rachel	 North	 Professor	of	Optometry	 PRIME	Centre	Wales,	Cardiff	University		√	Jonathan	 Richards	 Clinical	Director	Visiting	Professor	Cwn	Taf	University	Health	Board	University	of	South	Wales		Ruth		Richardson	 Continuing	Care	Manager	 Aneurin	Bevan	University	Health	Board	 √	Community	Nursing	Research	Network	Gaye		Sheridan	 Professional	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	Sciences	Clinical	Senior	Lecturer	and	Associate	Director	NWORTH	PRIME	Centre	Wales	|	Bangor	University	√	GP	Social	Care	Research	Strategy			www.primecentre.wales	10	References	1. Together for Health: A Five year vision for the NHS in Wales. Welsh Government 2011; Cardiff. 2. Together for Health, Stroke Delivery Plan: Our Vision. Welsh Government 2012a; Cardiff. 3. Together for Mental Health: Delivery Plan. Welsh Government 2012b; Cardiff. 4. Together for Health – a diabetes delivery plan. Welsh Government 2013a; Cardiff. 5. Together for Health – a heart disease delivery plan. Welsh Government 2013b; Cardiff. 6. Together for Health, Cancer delivery plan. Welsh Government 2013c: Cardiff.	7. Together for Health-a respiratory health delivery plan. Welsh Government 2014; Cardiff. 8. The Management of Chronic Conditions in Wales – An Update. Wales Audit Office 2014. 	

PRIME Centre Wales:Long Term Conditions Research Strategy

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PRIME Centre Wales:Long Term Conditions Research Strategy

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