final draft - intensive care and brain injury ppi unmet ... · brain injury healthcare technology...

Brain Injury Healthcare Technology Co-operative

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Patient Inspired Innovation

Acute Care: Brain Injury and Intensive Care Workshop 1: Tuesday 10th November 2015 – Cambridge

(Picture from Google Images)

In association with:

“To date the research agenda has largely been determined by medical researchers and scientists, but there is a growing expectation that patients, multidisciplinary clinical staff and the public should be involved in identifying clinical and research priorities.” Priorities for future intensive care research in the UK: results of a James Lind Alliance Priority Setting Partnership. Reay H et al. JICS 2014, vol.15(4)


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1. Background .................................................................................................................... 3

Patient Inspired Innovation through Public Empowerment .......................................................... 3 2. Purpose & Objective ...................................................................................................... 4

3. Approach ....................................................................................................................... 4

Working Together for Change -‐ Putting People First: Department of Health .......................... 4 Strategic Roadmapping: Institute for Manufacturing, University of Cambridge .................... 4 Priorities for Future Intensive Care Research in the UK: James Lind Alliance ........................ 5 4. Methodology ................................................................................................................. 5

4.1. The Survey .................................................................................................................................................... 6 Identification of Unmet Needs (into a long list) .................................................................................... 6 Refining Unmet Needs (review, separation and reword) .................................................................. 6 Theme Identification (grouping) ................................................................................................................. 6

4.2. The Workshop ............................................................................................................................................. 7 Interactive unmet needs development ....................................................................................................... 7 Ranking exercise (voting) ................................................................................................................................ 7

4.3. Proposal of Solutions ............................................................................................................................... 7 5. Findings ......................................................................................................................... 7

Visitor Book: Intensive Care Units – Unmet Need: Psychological Care and Support ............. 8 Patient Education Centers – Unmet Needs: Communication and Patients and Families Education ................................................................................................................................................................ 8

5. Conclusions .................................................................................................................... 9

6. Recommendations ......................................................................................................... 9

Appendix 1-‐ Priorities for Future Intensive Care Research in the UK: Priorities for future intensive care research in the UK: results of a James Lind Alliance Priority Setting Partnership. Reay H et al. JICS 2014, vol.15 (4) ................................................................................. 10 Appendix 2 – Working Together For Change: Using Person Centred Information for Commissioning, NHS England ................................................................................................................... 11 Appendix 3 – Summary Table of Survey Responses ........................................................................ 12 Appendix 4: Theme Landscape – Framework and Workshop Development ........................ 13 Appendix 5: Survey Distribution and Summary ................................................................................ 15 Appendix 6: Identified Unmet Needs ...................................................................................................... 16 Appendix 7: Survey ........................................................................................................................................ 17


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1. Background

Patient Inspired Innovation through Public Empowerment

The NIHR Brain Injury Healthcare Technology Co-‐operative (HTC) is organised by workstreams, with Patient and Public Involvement (PPI) crosscutting clinical themes from concussion through to rehabilitation.

HTCs have been funded by the Department of Health, through open competition to the National Institute for Health Research (NIHR) Clinical Research Infrastructure, to focus on clinical areas of unmet need that have lacked technology based novel solutions. The primary driver for the HTC is to work collaboratively with key stakeholders including patients and their carers as well as clinicians and industry partners, to define and address gaps throughout the patient pathway.

The Brain Injury HTC strives to integrated PPI/E principles across all workstreams and activities to ensure the entirety of the HTC portfolio is patient-‐centred, meaning that it is concerned only with what patients and carers believe it important. Matching patient and carer unmet needs to those of clinicians’ remains a key priority as the filtering process has proved a significant one. Through a combination of academic and service delivery the Brain HTC continues to establish and evaluate methods to develop, test and implement innovative solutions to improve practice.

As part of the overarching strategy the Brain Injury HTC has worked with theme and workstream leads to identify areas that require further patient and carer involvement to identify and validate unmet needs. Many areas have been identified that require ‘recruitment’ to study, however at this stage the Brain HTC is focused on its key objective of ‘Patient Inspired Innovation’ and the identification of unmet needs in the patient pathway.

Intensive care is an area that has been identified by the James Lind Alliance ‘Priority Setting Partnership’ as requiring increased involvement from patients and carers in the identification and validation of unmet needs (gaps) currently available to patients and their carers. This was highlighted to the Brain HTC through the Acute Care workstream lead (Professor David Menon and Dr Lara Prisco) in April 2015, furthermore Dr Joanne Outtrim had worked in collaboration with the Brain HTC to secured Research Capability Funding to research the role of families and carers:

Having a family member admitted to neuro Intensive Care Units (ICU) with a brain injury is a “living nightmare” (personal communication with family carer), and the lack of support for families in hospital after the injury can be profoundly distressing. Family members report suffering from high levels of depression, anxiety and post-‐traumatic stress symptoms, and want better support from local authorities and NHS services. There is still a need to define best practice for communicating with, and supporting families in the ICU.


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The Brain HTC is committed to the identification of unmet needs from a patient and carer perspective, the first of this series of PPI activities has focussed on intensive caregoing forward it is envisaged that additional areas of focus will include Cervical Spondylotic Myelopathy (CSM) patient pathway, Paediatric Neuro-‐rehabilitation and Cognition.

2. Purpose & Objective

The overall purpose of these activities is to establish the role of PPI as a fundamental principle in the Brain Injury HTC strategic vision, whilst raising awareness and informing NIHR development of PPI throughout its clinical research infrastructure.

As an example, the initial work in intensive care has focused on the following survey question: “What do we need to find out to improve the care of brain injured patients in Intensive Care and to promote survival and improve life?”

3. Approach

The HTC PPI theme has adopted a bespoke framework, drawing principles from three main sources, to facilitate the capture of unmet patient needs:

1. Working Together for Change 2. Strategic Roadmapping 3. Priority Setting Partnership: James Lind Alliance and Intensive Care Society

Working Together for Change -‐ Putting People First: Department of Health

The Working Together for Change (WTfC) methodology was designed by Helen Sanderson Associates. It is an approach used to coproduce change with people to inform strategic planning, commissioning and service development. It usually uses information from person centred reviews to shine a light on what is working well for people, what is not working so well and what might need to change for the future. In this project we adapted WTfC and used the patient survey and the workshop discussion to focus on these three areas in the context of people’s experience of intensive care.

Strategic Roadmapping: Institute for Manufacturing, University of Cambridge

Roadmapping is a process used to advance strategic objectives. There are many types of roadmaps, all of which address three fundamental questions:

1. Where do we want to go?

2. Where are we now?

3. How do we get there?


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The Brain Injury HTC has used this methodology on a number of occasions to provide a framework for collaborating with stakeholders when capturing unmet needs and potential solutions.

Priorities for Future Intensive Care Research in the UK: James Lind Alliance

In 2014 the James Lind Alliance (JLA) and the Intensive Care Society (ICS) developed a Priority Setting Partnership (PSP) in order to develop and rank a list of research questions pertinent to Intensive Care Medicine. (Reay H et al. JICS 2014, vol.15(4))

The methodological support provided by the longstanding JLA expertise in research questions generation and clinical uncertainties identification ensured consistency and robustness to its Partnership processes. In this view, the Brain Injury HTC has adapted a simplified and shorter version of the JLA/ICS Partnership exercise as a new format to be adopted for all its future PPI Unmet Needs workstreams.

The new format, outlined in the next section, has been piloted for the described PPI exercise in 2015, analysed in depth in view of the results and assessed by methodology experts of the JLA. Recommendations have been developed to implement the format for future events for the other workstreams of the Brain Injury HTC.

4. Methodology

The process’ new format includes 7 steps as outlined in table 1.

Step Source

1 Identification of unmet needs (into a long list)

SURVEY 2 Refining unmet needs (review, separation and reword)

3 Theme identification (grouping)

4 Workshop discussion (development)

WORKSHOP 5 Ranking exercise (voting)

6 Proposal of solutions

7 Dissemination of results ALL

Table 1: Seven step process


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4.1. The Survey

A survey was developed in collaboration with theme leads and campus PPI experts to enable nationwide dissemination of an accessible method of informing both research streams and NHS service improvement groups.

Identification of Unmet Needs (into a long list)

A survey consisting of a single open question based on recommendations of the JLA/ICS PSP was used to identify Unmet Needs from clinicians, patients, families and carers (see Appendix 7). The survey was available both online and in hard-‐copy with a pre-‐paid return. Contributions were sought from patients who have had an acute brain injury, relatives and carers with current/recent or past experience of intensive care.

The survey was disseminated in paper copies via post to the registered users of the Brain Injury HTC Register and within Cambridge University Hospital NHS Trust Foundation after approval by the relevant body and registration as Patients’ Experience Project.

The HTC sought online dissemination through links with charities, healthcare organisations and networks such as: Acquired Brain Injury Rehabilitation Alliance (ABIRA), UK Acquired Brain Injury Forum (UKABIF), Irwin Mitchell, Head Injury UK. See appendix 5 for full details.

Refining Unmet Needs (review, separation and reword)

Given the characteristics of the survey (single question with open-‐answer) all the responses were free text and most of them identified more than one unmet need. A small selected group including a clinician, HTC staff and a patient experience staff member reviewed all text responses (REVIEW), separated the unmet needs that emerged from each response (SEPARATION) and reworded them into a short plain English sentence (REWORD) as shown in table 2. See Appendix 6 for the long list.

RESPONSES COMPLETE UNMET NEEDS IDENTIFIED

ONLINE & ELECTRONIC 78+2 23+2 38

HARD COPY 13 13 35

TOTAL 93 38 73

Table 2: Refining unmet needs

Theme Identification (grouping)

The review group identified 5 main themes into which the Unmet Needs were grouped. These findings were then used to populate a matrix that was used to facilitate structured discussions at the workshop.


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4.2. The Workshop

Interactive unmet needs development

During the workshop a small group of patients was asked to review the existing Unmet Needs used to populate the matrix, discuss their significance for patients and ADD further Unmet Needs emerging during the discussion (36 new Unmet Needs were added). See appendix 4 for the updated landscape that captures discussions and additional unmet needs.

Ranking exercise (voting)

The next stage of the process was the interactive ranking of the unmet needs. Each participant was given 10 votes to use against unmet needs. All 10 votes could be on 1 unmet need or spread out over 10 different needs.

4.3. Proposal of Solutions

Many of the highest ranking needs linked directly to availability of clinical services, particularly physiotherapy. Through facilitated discussion the group were able to suggest solutions that might support patients and their carers through innovative approaches or technologies.

5. Findings All Unmet Needs identified through the survey phase were listed by the review group, see appendix 3. During the GROUPING step the following themes were identified:

Table 3: Themes

Finally, the workshop participants voted producing the following ranking table. The results are set out in Appendix 6.

THEME Patients Family and Carers

Service Delivery 9 9

Ongoing Care 7 3

Experience 7 2

Communication 4 4

Information 5 4 Total 32 20


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During the workshop the following potential solutions were identified in responses to some Unmet Needs and discussed as outlined below.

Visitor Book: Intensive Care Units – Unmet Need: Psychological Care and Support “the hospital provided some books and you could write a note in the book…I wish I had entered into the book more about his condition…he has a job to understand that, 'You didn't recognise us, you didn't even know us you, you don't know where you were', if only we had written in the book”. Family member.

Currently, ‘patient diaries’ are widely recognised as important clinical tool for psychological rehabilitation after intensive care and have been used in Scandinavia since the 1980s (Jones, 2014).

In contrast to the traditional model, relatives referred to diaries filled out and owned by the relatives. The informal nature of the ‘visitor book’ was discussed as providing a non-‐clinical interpersonal record of events, e.g. “today you opened your eyes”.

A potential solution suggested by a participant, based on their experience, was the provision of a platform for relatives and carers to input in to a visitors book or log. In recognition of the clinical setting this could be investigated as part of a pilot study that reviews the feasibility of the concept, current applications/solutions, and investigates the usability of either paper-‐based or virtual platforms (if not available).

Patient Education Centers – Unmet Needs: Communication and Patients and Families Education

Lack of information about conditions and disease or lack of information at the right time relating to the patients’ health condition is a consistently identified issue, across PPI forums as well as clinical and academic workshops. For example in a ‘Working Together for Change’ workshop focused on respiratory services:

From the patient and carer experiences discussed it is clear that signposting to appropriate information at the appropriate time could efficiently address this immediate need.

Discussion amongst the participants suggested a desire to explore how to personalise availability of current information. The existence of Postgraduate Medical Education Centers in the UK is a well-‐established reality although it is designed to provide specialized education to healthcare professionals seeking continued professional development and higher competencies and skills. There is potential and interest in developing Patients and Families Education Programs and Centers based on well-‐established overseas models (http://www.uhn.ca/PatientsFamilies/Health_Information/Patient_Family_Education) which provide professionally supported medical education and training as well as resources such as education facilities (patients’ library, simulation sessions, etc).


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5. Conclusions

The piloting of the initial Brain Injury HTC PPI themed engagement series has highlighted the following immediate high level actions:

• Further iterative development of individual components based on the project team analysis of lessons learnt and participant feedback (see appendix 6)

• Continuous evaluation through agreed outcome measures to inform future publication

• PPI vision to be embedded in future NIHR-‐HTC application and reporting

6. Recommendations

The following recommendations for the HTC steering committees and PPI engagement series support the overarching Brain Injury HTC objective of Patient Inspired Innovation:

• Capture the collaboration: In particular, with clinical leads and James Lind Alliance. The Brain Injury HTC will initiate an NIHR growth and impact case study.

• Feasibility of potential solutions: With a focus on technological innovation the Brain Injury HTC is committed to facilitating a patient led evaluation of the solutions outlined above and defined in appendix 4 and 6.

• Establish measures for PPI: This will be achieved through analysis of pilot approach and participant feedback, with the important inclusion of patients and carers within working groups and project teams. This will include basic measures such as:

o events held, o number of persons attending workshops, o consenting to be on the register, and importantly whether o needs identified and o ideas generated o inclusion of outputs in grant applications


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Appendix 1-‐ Priorities for Future Intensive Care Research in the UK: Priorities for future intensive care research in the UK: results of a James Lind Alliance Priority Setting Partnership. Reay H et al. JICS 2014, vol.15 (4)

http://spinc.sagepub.com/Journal of the Intensive Care Society

http://inc.sagepub.com/content/15/4/288The online version of this article can be found at:

DOI: 10.1177/175114371401500405

2014 15: 288Journal of the Intensive Care SocietyHannah Reay, Nishkantha Arulkumaran and Stephen J Brett

Setting PartnershipPriorities for Future Intensive Care Research in the UK: Results of a James Lind Alliance Priority

Published by:

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On behalf of:

Journal of the Intensive Care Society

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Appendix 2 – Working Together For Change: Using Person Centred Information for Commissioning, NHS England

Working together for change:using person-centred information for commissioning


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Appendix 3 – Summary Table of Survey Responses

! Patients( Carers/Family( Paediatrics(

Positive(Aspects(

SM!#38:!• Multi,Disciplinary!Team!assessment!!

SM!#14:!• Level!of!care!

Paper!#10:!• Kindness!

Paper!#4:!!• Care!from!doctors!and!nurses!

SM!#51:!• On!intensive!care!they!were!fantastic!

Paper!#13:!• Excellent!care!• Specialism!!

SM!#61:!• Staff!care!and!communication!

!

SM!#32:!!• Level!of!care!in!Paediatric!Intensive!

Care!Unit!SM!#20:!!

• Level!of!care/information!!

Items(for(improvement(

SM!#43:!• Translation!services!

SM!#35:!• Continuity/After,care!for!isolated!patients!• Face,to,face!support!groups!

SM!#38:!• Involvement!of!patients!and!family!in!

Multi,Disciplinary!Team.!• Peer!support!

SM!#31:!!• Patient!wanted!music!or!radio!• Communication!• Companionship/loneliness!!

SM!#19:!• Compassionate!care!• Agitation!and!delirium!management!

SM!#16:!!• Staff!to!have!Point!of!contact/Next!of!kin!

SM!#45:!• Awareness!detection!• Communication!following!cognitive!

impairment!!SM!#24:!!

• Clinician!availability!• Longer!visiting!hours!

SM!#14:!!• Real,time,!transparent!

communication!!Paper!#6:!

• Transparency!and!initiated!discussions!of!care!pathway/next!steps/expectations!

Paper!#5:!!• Practical!support!following!discharge!

from!hospital!• Rehabilitation!route!map!!• Signposting!provision!of!support!

SM!#32:!!• Parent’s!presence!in!Paediatric!

Intensive!Care!Unit!• !• Uncomfortable!invasive!catheter!

SM!#20:!!• Prognosis!


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Appendix 4: Theme Landscape – Framework and Workshop Development

Dealing(with(bereavement((personality(changes)(Consistent(management(within(ICU.(Differencing(opinions(between(clinicians(prove(managing(these(patients(difficult(from(day(to(day.

Prognosis (Multi(Disciplinary(Team)(MDT(assessment Excellent(care Level(of(care(in(PICU((Paediatric(Intensive(Care(Unit)

Care(for(unresponsive(patients(who(are(conscious( Awareness(detection Uncomfortable(invasive(catheter Level(of(care Specialism Level(of(care/information

Use(more(appropriate(assessments(to(reveal(the(full(extent(of(the(injury. Clinician(availability Kindness Staff(care(and(communication

Understanding(of(the(cognitive(and(psychological(experience(of(ABI Administrative(error Care(from(doctors(and(nurses

Psychological(care( Lack(of(understanding(of(patient’s(complex(needs On(intensive(care(they(were(fantastic

Involvement(of(patients(and(family(in(MultiMDisciplinary(Team Difficult(nasal(tube(insertion(with(complications(

Agitation(and(delirium(management Continuity(of(care

Staff(to(have(Point(of(contact/Next(of(kin(to(act(for(patient Get(to(know(staff

NeuroMspecialist(care((Neurological/surgical(competencies(of(staff(in(general(hospitals) Involvement(in(decisions(making

Early(diagnosis((psychology(vs(structural(disease) Identification(of(different(staff(members

Music Discharge(from(ICU/HDU(((anxiety/fear(family)

Regular(followMupTransparency(and(initiated(discussions(of(care(pathway/next(steps/expectations

Continuity/AfterMcare(for(isolated(patients Practical(support(following(discharge(from(hospital

FaceMtoMface(support(groups Preventing(patient(selfMharm(

Faster(recovery(through(dedicated(rehabilitation

Early(physical(therapy(in(a(specialist(unit

Peer(support

Early(psychological(care(to(foster(positivity,(selfMworth(and(belief(in(recovery(

Early(physiotherapy

Liaison/link(with(support(charities

Neuroimaging( Communication(aids((cognition,(emotion(and(consciousness)

Patient(diaries(for(amnesic(patients. Improve(visitor(facilities((day(room)

Memory(box( Earlier(psychological(support(for(families/management(of(expectations/reintegration

Earlier(screening(of(delirium

Companionship/loneliness( Longer(visiting(hours/(visitors(not(welcome((issue) Parent’s(presence(in(Paediatric(Intensive(Care(Unit

Aids(for(patient(orientation

Understanding(what(is(happening(in(intensive(care( Lack(of(followMup(to(complains( Nurse(support/training(for(communicating/dealing(with(relatives

Better(psychological(care Restraint(system

Compassionate(care Standard(UKMwide(procedure(to(keep(family(informed

Lack(of(memory(

Quiet(environment

Respect(and(dignity

Inappropriate(care

Translation(services( Communication(following(cognitive(impairment(

Communication(between(all(staff(for(continuity(of(care RealMtime,(transparent(communication(

Communication(from(staff(to(patient Communication(about(moves(and(changes

Communication(about(the(next(steps Improve(communication(between(neurosurgical(team(and(family

Visitors(book(on(intensive(care( Rehabilitation(route(map(

Friends(and(family(unrestricted(access(to(encourage(psychological(wellMbeing(and(bring(the(outside(world(in Signposting(provision(of(support

Information(on(prognosis Information(around(the(cause(of(injury

Lay(language(to(explain(clinical(conditions( Information(available(about(counseling(for(bereavement(

Lack(of(explanation(of(the(nature(and(progression(of(the(brain(injury( clinician/information(availability

Lack(of(Healthcare(pathways(info

(

Areas(for(im

provem

ent

Expe

rience

Commun

icatio

nService

(Delive

ryInform

ation

Patient(Feedback( Carer(Feedback(

Patient(Feedback( Carer(Feedback( Paediatric(Feedback(

Patient(Feedback( Carer(Feedback( Paediatric(Feedback(

Ongoing(c

are

Positive

(Aspects(

Enab

ling(p

rojects(a

nd(re

sources

(Solutions)

Paediatric(Feedback(

Lack%of%psychological%diagnosis%1%recogni4on%&%realisa4on%of%cogni4ve%problems%sugges4on:%with%OZC%Neurorehab%program%for%psychological%tes4ng%1%virtual%psychologist%

Improved%access%&%recogni4on%to%physiotherapy%longer%term%impact%reduce%disability%&%long%term%condi4ons%

Nurse%training%and%how%to%ensure%there%is%sufficient%specialist%knowledge%to%support%specialist%needs%in%more%general%area%

Transfer%between%hospitals/countries.%Notes%geFng%lost%or%knowledge%geFng%lost%

Pa4ents%keeping%their%own%informa4on%/notes%

simple%massage%of%hands%and%feet%with%favourite%body%lo4on%(scent)%helps%human%touch/combats%isola4on%and%loneliness%&%taps%into%different%senses%

Dedicated%rehabilita4on%plan%for%each%person%as%they%progress%from%ICU%

Balance%between%s4mula4on%&%rest.%Why%its%important%for%the%pa4ent%to%sleep%&%how%the%smallest%tasks%can%make%the%pa4ent%4red%

Key%Worker/go1to%person%wherever%possible%

Rela4ons%room,%1%thinking%through%all%the%uses%of%the%room%

Mood%Management%Ligh4ng%limited%to%day.%Music%therapy%tailored%to%pa4ent,%working%with%families%

Lack%of%memory%1%no%knowledge%of%4me%spent%in%ITU%and%difficult%to%gain%memories%from%others%aSer%a%period%of%4me%I%was%kindly%given%a%visitors%book%which%has%helped%me%hugely%to%find%some%info%but%very%liUle%medical%info%

Hallucina4ons%on%ICU%

Hiccups%on%ITU%1%unpleasant%experience%1%scary%

Self%management/involvement%Pa4ent%diary%(for%recording%ac4vity%against%checklist)%to%improve%accuracy%&%WT%

Limited%informa4on%signpos4ng%to%become%available%at%regular%intervals%

Pa4ent%Library%Access%to%info%1%whole%audience%1%medical%books%1%european%experience%'pa4ent%educa4on%center'%

Staff%should%encourage%families%to%chat%and%share%day%to%day%aspects%so%the%pa4ent%can%hear%them%&%their%voices%

rela4ves%room%1%Interac4ve%screen%1%fixed%tablet%explaining%about%prac4cal%issues%1%car%parking/accommoda4on/support%available/simple%medical%terms%

Talk%through%what%the%monitors%are%doing%1%so%families%don't%panic%

Think%about%font%sizes%when%producing%informa4on%for%families.%They%are%4red%&%don't%have%the%levels%of%concentra4on%they%normally%have%

Collabora4ve%projects%OZC,%MicrosoS%Research%Ltd,%Brain%Research%Trust%1%Funding%


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Appendix 5: Survey Distribution and Summary (Based on responses to participate feedback) Source Type Survey Completion Comments

Online Paper Total HTC Mailing list Email, Website, Social Media 6 6 People in research Website 7 7 Assumed – 7 responses received when this was

the only publicity for the survey ICU steps Email 1 1 Headway Cambridge Hard copy 1 1 Headway national website Website 1 1 SHINE Email, Social media 4 4 Headway Suffolk Hard copy 1 1 Distributed at conference CUH Schwartz Centre event Hard copy 3 CUH wards/clinics Hard copy 2 1 3 Brain Tumour Trust Email, Social media 2 2 Brain Tumour Charity Social media 1 1 Brookfields Hard copy 2 2 Assumed – 2 responses received on paper,

evidence suggests from Brookfields Stroke Association Talkstroke forum 3 3 Oliver Zangwill Centre Social media, hard copy and

patient forum 1 1


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Appendix 6: Identified Unmet Needs

Source' Identified'Unmet'need/Issue' WS'Votes' Grouped'Unmet'Need'

SV# $######Administrative#error# 0# Bureaucracy#

WS# $######Notes#getting#lost#or#knowledge#getting#lost# 0# Bureaucracy#

SV# $######Lack#of#follow>up#to#complains## 1# Bureaucracy#

WS# $######Patients#keeping#their#own#information/notes# 1# Bureaucracy#

SV# $######Clinician#availability# 0# Communication#

WS# $######clinician/information#availability# 0# Communication#

SV# $######Communication# 0# Communication#

SV# $######Communication# 0# Communication#

SV# $######Communication#about#moves#and#changes# 0# Communication#

SV# $######Communication#about#the#next#steps# 0# Communication#

SV# $######Communication#following#cognitive#impairment## 0# Communication#

SV# $######Get#to#know#staff# 0# Communication#

WS# $######Identification#of#different#staff#members# 0# Communication#

SV# $######Improve#communication#between#neurosurgical#team#and#family# 0# Communication#

SV# $######Information#available#about#counseling#for#bereavement## 0# Communication#

WS# $######Lack#of#Healthcare#pathways#information# 0# Communication#

SV# $######Lay#language#to#explain#clinical#conditions## 0# Communication#

SV# $######Real>time,#transparent#communication## 0# Communication#

SV# $######Signposting#provision#of#support# 0# Communication#

WS# $######signposting#to#become#available#at#regular#intervals# 0# Communication#

SV# $######Translation#services# 0# Communication#

SV# $######Information#around#the#cause#of#injury# 1# Communication#

SV# $######Lack#of#explanation#of#the#nature#and#progression#of#the#brain#injury## 1# Communication#

SV# $######Point#of#contact/Next#of#kin# 1# Communication#

WS# $######Talk#through#what#the#ICU#monitors#are#doing#>#so#families#don't#panic# 1# Communication#

SV# $######Transparency#and#initiated#discussions#of#care#pathway/next#steps/expectations# 1# Communication#

SV# $######Understanding#what#is#happening#in#intensive#care# 1# Communication#

SV# $######Practical#support#following#discharge#from#hospital# 2# Communication#

WS# $######Key#Worker/go>to#person# 3# Communication#

SV# $######Consistent#management#within#ICU.#Differencing#opinions#between#clinicians#prove#

managing#these#patients#difficult#from#day#to#day.#

0# Continuity#of#Care#


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Appendix 7: Survey

Improving the Experience and Care of Brain-injured patients in Intensive Care Units (ICU) through Technology

A survey This survey is the first step of a process to identify research areas and clinical unmet needs regarding the experience and the care of patients with brain injuries on intensive care units. As Healthcare Technology Cooperative we are interested in engaging with patients, carers and members of the public. We want your views on the use of technology to improve experiences and care for people with a brain injury and your help in designing research about the effectiveness of technology to do this. There are several ways to be involved: We have a mailing list for people to receive information about our activities and research. We are also holding a half-day workshop on Tues. 10th November 2015 in Cambridge to discuss the potential uses of technology for patients with a brain injury and their carers. Thank you for your help Prof David Menon, Professor of Anaesthesia & Dr Lara Prisco, Locum Clinical Lecturer in Anaesthesia, University of Cambridge

Question 1: Which of the following best describes you? Please X the box

I am or have been a patient I care or have cared for a patient Other - please explain

Question 2: Would you like to be involved further with the Brain injury HTC?

I would like to be put on the mailing list No thanks

I would like to attend the workshop


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My contact details are: __________________________________________________________________________________________________________________________________________________________________________________________

Your contact details will be stored by the Brain Injury HTC in a secure database and will not be linked to your responses to this survey. Only HTC staff working on this project will have access to the data.

We want you to tell us about your experience of intensive care after a brain injury. What were your needs as a patient, carer or relative that were not met on intensive care? These could be physical, psychological, social, economic or other. All ideas are welcome. We are anxious to find the patient, relative and carer view of what we can do to improve.

Question 3: What do we need to find out to improve the care of brain injured patients in Intensive Care and to promote survival and improve life?

Thank you for completing the survey. Please return paper copies to the address below, or email your survey to [email protected]

Patient information will be anonymous and no report will identify individual patient details.

The results of this survey will be published on our website https://brainhtc.org Brain Injury Healthcare Technology Cooperative Dept. of Clinical Neurosciences University of Cambridge Box 167 Cambridge biomedical Campus CB2 0QQ

Tel. 01223 336936

Email [email protected] Website https://brainhtc.org

final draft - intensive care and brain injury ppi unmet ... · brain injury healthcare technology...

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