Good morning my name is Elizabeth Harnett and I am the Head of the Clinical Governance Unit at the CHW in Sydney Australia and I am so pleased to be here and speaking with you this afternoon about how we have achieved PFCC through our CP Program.
As I said none of my consumer advisors could be here so here is some of their stories and some background to our CP & PFCC program at CHWA Day in the Life of a Family Advisory Councilhttp://www.youtube.com/watch?v=0qsRn7K8S1A(skip forward to 4:15)
I know with this audience I don't really need to go over this but as the amazing families who I have the privilege of working with have so eloquently already said on the DVD- Consumers have a unique viewpoint of the service that providers don’t have- They are also experts in their & their children's lives- If we want a service that will meet their needs, we have to know what those needs are- We all have a right to be involved in decisions about things that could affect usIt makes so much sense it is hard to understand why this is still so difficult to achieve systemically across the board at every level in every situation.
- We can learn about how consumers experience the services we provide - Allows us to identify gaps in existing services- Provides an opportunity for joint problem solving in areas of common concern- We’re more likely to get it right if we involve consumers- It’s likely to lead to fewer complaints- Can engender consumer support for the organisation and its services- Allows us to prioritise our improvement efforts- Gives consumers a greater sense of 'ownership' over services and over their health
There are many spectrums on which you can base a discussion of increasing consumer participation leading to PFCC and this is the one which we have chosen based on the International Association of Public Participation IAP2 – it has been useful for us to use a framework to measure our progress and to analyse where the gaps were in trying to achieve systemic PFCC.
So three years ago we had achieved much as you can see from this table of elements, we had a FAC, several PAG’s groups as well as a few community reps in high level committees, and had a few examples of where we were working in close collaboration with families and had a consumer participation conference which was gave CP reps a chance to really contribute at the highest level of the organisation – but while we had pockets of excellence (and were judged very well against our peers and colleagues in the rest of healthcare) we did not have a systematic approach and had way too much activity in the consult spectrum
Just a few facts about where we were at 3 years ago- 4.1% of all improvement activities involved consumers -The Family Advisory Council was consulted only three times that year regarding high level strategic issues- 15 consumers were on hospital committees - We had huge amounts of feedback from patients and families about what we were doing well and what needed to improve but we were not really utilising this information well as we could and it was a bit of a one way flow of information.We decided that we really needed to do better and needed to take a systematic approach – we used much of the IPFCC as inspiration & resources to guide the journey and tried to dedicate some more human resources to the endeavour.
With a full time consumer participation coordinator on board in 2008, we set out to expand the program (this was achieved by reallocating a half time medical clinical risk manager position which means I had to take on more of this work to gain a focus on FCCC and this was a lesson that every organisation needs to learn is that this requires a focus and a dedication of human resources – not alot but you must have a little.SO what did we doWe looked at education – the courses we were running, new fact sheets on a range of issues – one of our most popular is on surveys is one of the most accessed fact sheetsThe updated policy and new guidelines helped further embed the practice of consumer participation and the culture of family-centred careNew consumer advisory councils give staff and consumers more ways of working together.Training for consumers was provided in 2010, which included representatives from all the Hospital’s consumer councils, other than the Youth Advisory Council (YAC). This was done at the suggestion of FAC members in the 2009 annual evaluation.
New consumer advisory councils gave staff and consumers more ways of working together – higher on the spectrum – collaborating and moving more into empowerment. With the increased focus on staff education on PFCC and in how to work with consumers we have seen a dramatic increase in the collaboration work of FAC, PAG’s and the amount that their advice has been sought.Very importantly we realised that our focus for too long had been on children and families but most of our consultation and collaboration was with parents and the voice of young people were not being effectively heard or utilsed to make the system better and improve their experiences of care – to discuss how we have rectified this is another talk and is on tomorrow but briefly we established a YAC and from the outset this was a partnership with young people with a high degree of collaboration and at times empowerment and I plan to show you a little snippet of their work later in this talk.
Training for consumers was provided in 2010, which included representatives from all the Hospital’s consumer councils, other than the Youth Advisory Council (YAC). This was done at the suggestion of FAC members was part of the feedback obtained in the 2009 annual evaluation of the FAC (now all our CAC’s have an annual evaluation and annual plan to keep us on track and keep the groups as well as the whole system continuously improving)This training very much focussed on participants gaining advocacy skills and strategies to help them with the work of systemically improving PFCC across the system.We had in 2011 a CP conference which was very well attended and included some high level speakers from the State and then locally about the PFCC work happening in the hospital, network and across the state and country.
I ‘d now like to spend a bit of time talking about an exciting initiative, which is our first “virtual CAC” Why did we want to do this - We wanted broader involvement of families- Wider community representation- Wanted a forum that was going to be more accessible for busy families and those who live outside the Sydney metro area- Families Online, an email advisory panel, was born- More than 30% of current members live in rural or regional NSW
- Sign up through the CHW website- Email added to secure and confidential database- Maximum of two emails a month sent seeking feedback or invitation to complete survey- Requests for consultation come from staff all around the Hospital
Improvement activities involving consumers up from 4.1% in 2008 to 15% in 2011FAC consultation – only 3 times in 2008, 23 times in 2010 as there was a lot of activity at the hospital and 18 times in 2011Consumers on committees, only 15 in 2008 now 70 and our online group is growing much more quickly that the other groups which is interesting
One of our biggest achievements alongside Families Online in this time was the establishment of the YAC in 2010 – which gave us an opportunity to hear from and partner with YP – who we had really not been doing a great job of listening to before this. I would just like to finish up now with a great DVD which the YAC made on working with YP and involving them in decision making about their care (an area which requires major improvement at the Hospital)Video – made by the Youth Advisory Council – I’m just going to show you a couple of minuteshttp://www.youtube.com/watch?v=qCN303QIDrs&feature=youtube_gdata_player(skip forward to 3 minutes)
Elizabeth Harnett - Acheiving Patient & Family Centred Care through Consumer Participation
Family-Centred Care at The Children’sHospital at Westmead http://youtu.be/rxiswGvZxZQ Video – made by the Family Advisory Council on PFCC
Why involve consumers? Consumers have a unique viewpoint of the service that providers don’t have They are also experts in their lives If we want a service that will meet their needs, we have to know what those needs are We all have a right to be involved in decisions about things that could affect us
Benefits of ConsumerParticipation We can learn about how consumers experience the services we provide Allows us to identify gaps in existing services Provides an opportunity for joint problem solving in areas of common concern We’re more likely to get it right if we involve consumers It’s likely to lead to fewer complaints Can engender consumer support for the organisation and its services Allows us to prioritise our improvement efforts Gives consumers a greater sense of ownership over services and over their health
The Consumer Participation Spectrum • To convey information • Poster, leaflet, website, advertisements Increasing level of consumer input Inform • To seek feedback which may be incorporated Consult • Surveys, focus groups, public forums • To work in partnership with consumersCollaborate • Working groups, advisory councils, committees • Consumers are given decision-making powerEmpower • Consumer-run councils, citizen juries
Our Consumer Participation & Partnerships Program - 2008 Information for patients & families Information for staff Rights & Consultation with patients & families Family Advisory Consumer Responsibi- Staff training on involving consumers Council participation lities: Adults conference Working in partnership with consumers Empowering families Ward Rights & Suggestion Community reps Community information Responsibiliti box on Public reps on sheets es: Adults feedback Accountability Health Care Committee Quality Committee Handbook Consumer Fact sheets NSW Health Quality Involving Rehab & Brain Grace (NICU) for Families participa-tion Patient Improve- children & Injury Parent Parent guidelines Survey ment families in Advisory Council Advisory Surveys improve- Council mentThe Consumer Participation Spectrum INFORM CONSULT COLLABORATE EMPOWER Increasing level of consumer input
Consumer Participation & PartnershipsActivity - 2008 4.1% of improvement activities involved consumers The Family Advisory Council was consulted three times 15 consumers on hospital committees We had huge amounts of feedback from patients and families
Boosting consumer participation New workshops for staff eg focus groups, surveys, family- centred care New fact sheets eg focus groups, surveys New Consumer Participation Policy and Guidelines
Boosting consumer participation Families Online Consumer training in advocacy Consumer Participation conference
Families OnlineA different model of engagement We wanted broader involvement of families Wider community representation Wanted a forum that was going to be more accessible for busy families and those who live outside the Sydney metro area Families Online, an email advisory panel, was born More than 30% of current members live in rural or regional NSW
Families OnlineHow does it work? Sign up through the CHW website Email added to secure and confidential database Maximum of two emails a month sent seeking feedback or invitation to complete survey Requests for consultation come from staff all around the Hospital
What has been the impact?In 2011: 15% of improvement activities involved consumers The FAC was consulted 18 times (23 times in 2010) 70 consumers were on hospital committees
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The needs of young people at TheChildren’s Hospital at Westmead Video – made by the Youth Advisory Council http://www.youtube.com/watch?v=qCN303QIDrs &feature=youtube_gdata_player