Tuesday, August 19, 2014

Australian Health Care Reform Alliance Summit – Canberra, 15-16 July 2014

The Australian Health Care Reform Alliance held a summit in Canberra in July. Four members of HCCA attended: Russell McGowan, Bill Heins, Fran Parker and Sue Andrews. We encourage consumer representativeness to share reports on events they attend and Sue Andrews has provided the following report on the summit.

The AHCRA summit brought together its peak body membership as well as a range of speakers offering expert health research and industry perspectives in the context of the election of the Abbot government in September last year, and more specifically the measures  in the May 2014 Federal budget. Overarching concerns were the dismantling of government infrastructure to deliver health reform and a range of budget initiatives that will, if implemented, seriously threaten our universal health care system, particularly the MBS and PBS copayments, and plans to privatise primary health care.

Speakers challenged and critiqued the current government’s rationale for its budget measures -seeing ‘health’ only as a budget issue, a lack of understanding about the complexities of the health care system, particularly the importance of preventative health and primary health care. Speakers such as Peter Martin, Economics  Editor of The Age newspaper, argued against  the government’s proposition that our health system is not sustainable. We may spend more but we get good services and good health outcomes overall. He highlighted the research that indicates that people are willing to pay taxes to fund good quality, equitable healthcare. Adam Elshaug   (Menzies Centre for Health Policy) noted that a significant amount of money is spent on ‘low value and no value’ healthcare and argued for an ongoing review and assessment of MBS items, many of which are overused and others cause harm.  Michael Armitage, CEO, Private Healthcare Australia put a case for increased involvement of the private health care providers in contributing to higher quality and lower costs of healthcare.

The session about ‘What happened to health reform?’ included presentations from Tony Sherbon on the fate of National Funding Reform and Activity Based Funding for acute care/hospital services; Heather Yeatman, President of  PHAA, emphasising the need for clarity about the difference between  ‘health’ and ‘healthcare’; and Paresh Dawda from Ochre Health in Canberra, pointed out that countries with strong primary healthcare systems have lower overall costs and generally have healthier populations.

A Members panel offered a range of different perspectives about where things are at and what needs to be done  -  a grim picture of fragmentation, withdrawal of resources – human and financial, lack of investment in professional training, lack of attention to models of care that work ie that meet the needs of patients/consumers/citizens. The crucial role of the consumer voice was discussed and the importance of always involving consumers and their advocates in these debates, taking account of models of care that work ie consider the evidence, evidence based decision making.

At the end of the summit a communique was crafted which drew together the key issues  discussed at the forum and provided that basis for subsequent discussions with Parliamentarians. It includes: Concern about the shift away from a universal system, value of primary health care, qualified support of PHNs, issues of sustainability, health workforce issues, continue improvement of oral healthcare system, stronger role of consumers, as well as AHCRA strategies for better engagement with the broader community about all these issues.

The main challenge at this point in time was about how to engage with a Government perceived to be driven primarily by ideology rather than a broader understanding of the complexities of our health care system and an evidence based policy approach. A government that is committed to introducing a system that is based on principles of users pay, increasing privatisation, deregulation, and minimal Commonwealth government involvement in funding.  These are critical issues that will adversely affect all consumers of healthcare and about which HCCA needs to keep a watching brief.

Sue Andrews

Saturday, August 9, 2014

International Patient and Family Centred Care Conference #6

Providence Health Care – Shared Care Partners for Patients

Like every other health service Providence are looking at an ageing demographic that is threatening to overload their health care system and this has prompted health care funders to understand that there is a need to have activated, engaged patients. Supporting people to self-manage is certainly one way to deal with the challenge but you can’t have activated and engaged patients who are skilled at self-management unless you have a system that supports consumers and our families in self management.

The Canadian health care system is one of the prized assets of their country, they value this and want to maintain it. This has come up in many of the sessions and as I talk to people about our universal health care and the way in which it is being eroded they understand my anger about this.

The Shared Care Committee initially conceived to improve working relationships between primary and specialty care. Very quickly the made the patients voice an important part of the dialogue. It is a joint project between BC Medical Association and Ministry of Health. At the table is also health authorities, and a patient representative. It has spawned a number of projects wich they listed on their slide, an impressive list that makes me want to find out more. Today they are talking about the project of the lower mainland, around Vancouver.

The challenge to involve patients and look at rational service delivery is most difficult in big cities along the 49th parallel as they have a model that is costly, disconnected and specialty –centric. Now, the 49th parallel to me makes my think of a kd lang album and a brewery I found in Vancouver but there is obviously another meaning. 

There are 600 more specialists in Vancouver than family physicians and specialists are not always deployed in the right way, and communication between the two are not always meaningful and patients get lost in the shuffle. So the geography is ripe for improvement in shared care. Sounds a lot like Australian health system.

They want to be able to communicate better, address the access issues that are preventing people from receiving the care they need, to improve patient flow, patient journey. And they want to minimise duplication and inefficiency in the system as it is an issue that is preventing specialists from responding to patient needs. The panel spoke about the benefits of having the Ministry of Health involved and committed to bringing about change. The Ministry also recognises that chronic disease management belongs in the community with the family care provider, not the acute care hospitals. Some hospitals want to get into the business of chronic disease management but this is better placed in the community. So they are very concerned with trying to rebalance the work that is going on between specialities, acute and community based primary care.

The Patient Voices Network in BC is a resource for patient representatives and members of advisory councils. So patients are connected to a broader base. Doctors and those working in the health services are somewhat relieved that the patient representatives do not have an axe to grind.

Patient and provider experience, important to not only engage patients but also health care providers in service redesign. They have three prongs to their work. SLIDE includes cost and one other element I didn't catch but will check out.

They find that it is all too easy to make assumptions about what patients need and what is important to them but to have a patient representative at the table these assumpltions can be unpacked and challenged. For example, the ability to receive a copy of the consultation notes. They want access to this information as they often have the chronic disease for the rest of their life and they want to learn as much as they can about this. But some patients will require more support than others to understand this. And timing of appointments is a big issue as those people who love out of town have difficulty in getting to their early in the morning.

They have guidelines and there is a good slide on this. The first thing they say is: include patients form the beginning and have them as full team members.

They also set out some practical advice about the logistics including providing instruction on how to get to the meeting room, provide refreshments and food and need to check for allergies and sensitivities; provide reimbursement ; think about the time of meetings as many people with chronic conditions have a full time job managing their condition just to get there and some may also need to make arrangements to have time off work.

It was fascinating to hear Robert Levy MD, a respiratory physician, reflect on specialist behaviour. He said that lung, heart, diabetes and kidney team all got together as they realised that they were slow to understand that works for one set of organs may not be helpful to other organs. Their training is very organ specific but their patients have more than one set of organs. I always love hearing this. I know that my body has more than one set of organs. We really need to do something about medical education so that they have a more holistic perspective.

The panel reflected on Successful Initiatives
RACE- RapidAccess to Consultative Expertise. Real time telephone access. It is phone line for family physic and. It is a phone line with a selection of specialty services. In 2010 it started with five services and has grown to 22 services. They take more than 15,000 calls to the line. 78% of calls are answered within 10 minutes and 60% of calls avoid unnecessary consults and 32% of calls avoid unnecessary ED presentations. They have estimated that there is a saving to the system of $200 per call.
They have developed RACE in a box, with 5 page booklet on how to set this up.
RACE calls take about 5 minutes and medication advice, testing advice, affirming the view of the Family Physician. They receive 35% of the usual fee of seeing a patient face to face consult but this will take an hour once they see the patient and then write up the consult. So it does free up resources. 
Acknowledgment of referral – fax back form. This is a great idea as often this is when patients fall into a crevice. I am surprised that the Fax is King. And there was no mention of an electronic solution, shared records.
Notification of admission: So now family physicians are notified that their patients are in hospital. The notification includes an invitation to the FP to participate in the discharge planning process.

Three levels of patient participation: individual, organisations and system
Hang Tough Arthritis Support Group. Arthritis increases your risk of heart disease. And anyone with inflammatory arthritis is at risk, regardless of age and gender. IT is not a benign diseases and we do not need to be protected for the tough messages as we need to know this so we can make decisions around our own care.

Patient Voices Network Framework. Patients as Partners Partnerships Framework looks really interesting. We are currently reviewing the ACT Health Consumer and Carer Participation Framework http://health.act.gov.au/c/health?a=dlpubpoldoc&document=2771so I will definitely be looking at this one more closely.

The slide gives examples of how they contribute. They get a greater understanding of the organisation and the services. They have the positive opportunity to improve the system for others. Many people come to the Network because they experience care that was not a good as it could be and this provides an opportunity t make a difference to others.

A couple of gems from the consumer members of the panel:

We have discovered many of the gaps in the system as we have often fallen through them

What every patient wants is good, safe care in a timely manner

Communication is a theme that emerges across the patient journey: referrals to specials, clarity for patients, consults, support for complex chronic diseases, system acknowledgement of patient realises, hospital communications.

The Patient Voices Network has a series of videos of consumer representatives that you need to watch. Really inspiring!

Another fabulous session that I look forward to sharing with my networks.

Darlene Cox

International and Patient Centred Care Conference #5

From Partners in Care to Partners in Research –Sue Sheridan, Director of Patient Engagement at PCORI

I have been following the development of PCORI from afar. PCORI is the Patient-Centered Outcomes Research Institute.

What intrigued me was that here was  a body focused on supporting consumer priorities for research and had a core criteria of involving consumers as partners in the development of the research questions, on the research team, analysing results and disseminating the findings. This is really good. At HCCA we are involved in some research but see that this is a real area of need.

So, I was really pleased to hear from Sue Sheridan, Director of Patient Engagement at PCORI about their processes, some examples of research projects and what they have learned along the way.

Participation in research is different to participation in care. We certainly find this and it was really good to hear Sue Sheridan say this right at the start.

What follows are my notes from her talk. 

So what is patient engagement in research? Created by the Affordable Care act and will only fund research where there are patient partners on the teams, design the questions and with outcomes relevant to patients. Patients don’t read the Lancet and JAMA show do we share evidence?

COPD patient didn’t follow the instruction on O2 use and so was re-hospitalised as he didn’t understand the importance of using it, how to order it.  So the research is looking at devloping consumer materials and then measureing if peer intervention improve outcomes.

End of life care and support, John Hopkins. Mother developed research question, she lost her child and her mother at the same time and realised that there were discussions that did not happen yet they were critical. PCORI funded this project.

How can you improve outcomes by tapping into the experience of people living with these conditions? They are recruiting via facebook and social media.

Patient and family centred research – policy – evidence based patient and family centred care – improved outcomes – form a pyramid with the research at the bottom and improved outcomes at the top.

Research has not answered many questions that patient face. People want to know which treatment is right for them. Patients need information they can understand and use. PCORI focusses on comparing interventions (eg, visual assessment with Bilirubin test for jaundice)

Sue Sheridan shared a story yesterday about her experience with her son. Today she spoke about her husband falling through the cracks in his cancer journey. I appreciate her generosity in sharing these stories. When her husband was presented with treatment options for cancer the neurologist  gave them two options: Gamma knife or cyber knife –but he could not say which was more effective or which option was best? They do not know what difference. One was available locally, the other involved travel to California. There was not evidence at the time to indicate which technique had would lead to a better outcome for her husband. So, as she said, they opted for "the cyberknife beacuse the name was cooler". I just googled this and the first thing that came up was gammar knife of cyber knike - what's the difference? 

Patient engagement in the design and conduct of research offers a greater likelihood of influencing research to be patient centred, useful and relevant. It establishes trust and a sense of legitimacy in its findings. It will lead to successful use and uptake of research results by the patient community

We have lived experience and we know what is important to us. Our data is our currency. Consumer groups are coming together and agreeing to share their data with researcher to make a difference. And patients have connection to other people and online communities. Patients can open the world up to researchers not only for recruitment but also dissemination of results.

Patients contribute lived experience of condition or disease and we can help to shape questions that are important to patients and outcomes that are important to us, such as quality of life. Patients focus on patient centeredness, ethics, safety and urgency.

PCORI have five criteria, three relate to robust science method but the other two relate to patient centeredness and patient and stakeholder engagement. PCORI has engagement officers to ensure that the projects are achieving the milestones for patient centred care and stakeholder engagement. Authentic and meaningful engagement and doing as much as they can to lead to patient centred research.

The Rubric: They have delivered a rubric that spells out what patient engagement looks like. It also identified principles that apply to each aspect: planning the study, conducting te study, disseminating study results and PCOR engagement principles. For example in conducting the study: How best to disseminate information about mental health in the Arkansas delta. They changed the way mental health was spoken about as this is perceived as something for crazy people. So they changed it to emotional wellness.

She also spoke about a project in New Mexico – where there are high rates of substance abuse and PTSD. Peers are delivering a program called Seeking Safety to the mental health community. And area under-served. One part of the community is seeing a psychiatrist and others are seeing a peer. So is it effective? They are comparing the delivery of the same tool.

Co-learning Kelly Young Patient partner with Rheumatoid Arthritis. Patient are often experts in their diseases but we are experts in our experience and this is invaluable to the project. Find a research that wants your input and your presence. You will both learn each other’s language. there is a blog post on the PCORI blog about this also. Well worth reading.

One of the benefits of PCORI is that they are challenging deeply held beliefs about expertise. There are really three critical roles that need to be recognised: Researcher, Patients and Clinicians: As the rubric is developed there will be more examples of partnering with patients and also clinicians, as their voice is needed as well.

They are coming out with a statement on fairly reimbursing patient partners. This was a message from consumers to flip the funding and not just provide funding to universities and medical centres.

Pipelines to proposals PCORI has created a three tiered approach. Tier 1 pipeline. Pipelines to proposals – fund a patient $15,000 to find a researcher. What are the outcomes important to patients in rural Wyoming with Parkinson’s disease? Young woman in Seattle looking at preterm births. Making sure that HIV patients make their appointments. And there are many projects online that you can read. The application is 8 pages and uses lay language. It is a nine month project. It has potential to move into Tier 2 and then Tier 3.

Great work and exciting to watch.

Darlene Cox

Thursday, August 7, 2014

International Patient and Family Centred Care Conference #4

Better together – partnering with families

Deborah Dokken and Joanna Kaufman from IPFCC: Joanne is responsible for content on the website and also looks after the PFAC list-serve. Deborah Dokken is a Patient and Family Leader and works on Better Together Campaign.

Help to change the concept of families as visitors to partners in care. The IPFCC has a new campaign and tools that will help in changing this concept.

They showed a slide with a number of signs of visiting hours signs – families feel locked out, that their loved ones have been imprisoned, that they cannot see them to calm they and check tha they are okay. 11% of hospitals in New York state have 7 hours or fewer of visiting hours. And 40% of all hospitals in the US restrict visitors. Even ins hostpials that have open visitation 70% of ICU poslicies restrict family visiting. When people are at their sickest when they are at their most vulnerable they need to see their family and friends.
They put up a quote from Aronson (2013) that I really like: active participation of patients and families is essential to optimal outcomes. The full quote is richer - so here it is:
...the impetus for my decisions lay in a trait of our medical culture. When we call patients and families “good,” or at least spare them the “difficult” label, we are noting and rewarding acquiescence. Too often, this “good” means you agree with me and you don't bother me and you let me be in charge of what happens and when. Such a definition runs counter to what we know about truly good care as a collaborative process. From the history that so often generates the diagnosis to the treatment that is the basis of care or cure, active participation of patients and families is essential to optimal outcomes..

In the Plenary session Leilani spoke powerfully about the impact of tradition and habit and the IPFCC team shared a similar comment:
Much of what takes place in a way of specific policies and practices … across country is baed on tradition rather than science (Market 2008)

There are beliefs and concerns around the need for restrictive practices and these include: infection control, gets in the way of staff doing their job, noise and disruption to other patients, not enough physical space, confidentiality and privacy, cultural differences, security and believing that patients and families want restricted hours.

They gave a couple of examples where the change has made made successfully.
Anne Arundel Medical Centre Indianapolis, Merryland. "Recognizing that family members and loved ones are an important part of a patient's care team, Anne Arundel Medical Center promotes family presence. All rooms are private throughout our hospital facilities." 
The other example was something like East Carolina Heath (although I'm not sure that's right). They're motto os terrific: We’re in this together. We want families and patients to be part of the team.

The presenters stressed taht change doesn’t happen overnight, and it's a bit like taking two steps forward and one step back. It will take time. It is important to take the time to listen to everybody’s concerns – housekeeping, security, nursing and doctors and also administrative staff. This involves significant change and re positioning: it is not about allowing people to visit but rather changing the concept to one that welcomes families and visitors.

It is useful to have a forum where staff can voice their concerns. And it is useful to convene discussion groups with particular groups and have a family share their story with senior leads and describe their experience of being treated as visitors.  And it really helps to have the CEO on board.

Each department needs to identify all the things that are preventing them from being open and welcoming facility and to map what is required to address the concerns that are. They need to be heard.

They showed a video of Anna Roth CEO, Contra Costa Hospital Martinez, California speaking about her experience of introducing open visiting hours. I have paraphrased her here...
“No one is coming to visit our facility, the people who come to be with our patients are part of their lives. We are the visitors, not them.”

They publish how many people are staying overnight so that staff know the impact of the change in policy. Within one month 641 people stayed overnight in 166 bed hospital. ( I need to watch the video again to check hat figure.)

With the short length of stay in hospitals increasingly the norm it means that 362 days of the year patients are somewhere else and not in hospital. We are at home, with our families and friends and yet for the three days we are in hospital our families and friends become visitors in our lives. This simply doesn’t make sense.

The Institute want so change visiting hours in 1000 hospitals across the US and Canada in the next three years and to this end they have developed a toolkit for use. There are five main areas of the toolkit: strategies for changing policies; strategic for educating staff; guides for families and staff; videos; and also media resources.

These resources are available to download at no cost. These are materials to be used and adapted. They are in pdf and can be printed, and logos can be added. This will help people to get started and incorporate the experience of other services that have already started this work and you benefit from the wisdom other others.

In closing they added a few other messages:
  • Patient gets to define who their family is, not the hospital. Hospitals in the past have prohibited visitors and made decision out family. This is important.
  • These are tools to make it a little easier but it is not going to be easy.
  • Do we “allow” families or does your website talk about differentiating visitors from family. Family are partners in care and there is benefit in having them there. Visitors, like neighbours and work colleagues may be visitors and
  • Family presence and not “visitation”
  • Participation not “permission”

“Families are respected as part of the care team – never visitors – in every area of the hospital” Lucian Leape 2009
Question: how can you meet the needs of specific populations? Caucasian members of the Family Advisory Committee are comfortable with restrictions on visitation policy yet Latino members want policy relaxed to allow for more than two people visiting at the time. How do you deal with this? Work with the Family Advisory Council to work through this issue to develop a policy that

Question: How long does it take? It takes about a year to make it happen and establish the process to make sure that everyone is heard. Identifying the goal, identify the issues and concerns and plan for the next step. There are 12 profiles on the IPFCC website that talks about the processes these organisations undertook to revise their policies.
Vanderbilt trauma unit, lots of gang activity workplace violence committee help in training the nurses in how to deal with this. If family is being disruptive and they cannot be I the therapeutic environment and lend themselves to the healing environment then they cannot be here and will be asked to leave.

Darlene Cox

International Patient and Family Centred Care Conference #3

Three people were on the panel: Debbie Higgins parent Chair of Advisory Council, Audrey Davis Past Chair of Family Advisory Council and Alicia Huettel Family Centred Care Co-ordiantor

Pioneering research for children with Cancer and other catastrophic diseases
There are currently 2,500 active patients at St Jude’s and they want feedback from as many patients as possible. They want to include diversity by diagnosis, treatment status and locality. They are also keen to develop a variety of ways for patients and families to share experiences, offer input into policies, projects and collaborations. 

St Jude covers transport costs for people to come to the hospital to attend Family Advisory Committee meetings. In times where there is increasing pressure on hospital budgets the E-Council is an efficient and easy way to get more real time experiences at reduced cost.

The Quality of Life Steering Council oversaw the establishment of the E-Council. They formed Parent Manger roles and there are six people who participate in this way. Sub groups by diagnosis and in October they are planning to launch Spanish speaking site.

They provide lots of useful questions for you to answer in considering if this is the right approach for your organisation: What is the hospitals culture and experience of social media? St Jude’s is very cautious about Facebook and Twitter and can be described as risk averse and wanted to use a website rather than social media. Is there ease of maintenance and supervision and what reporting was offered? Also wanted to consider options for discussions and sharing, such as file sharing and discussions groups. Need to think about the information shared and how to receive feedback. And sharing personal health information is a significant issue and o sigh is completely safe but does it meet the requirements of the legislation and hospital policies? And security and visibility to the outside world? How will information be safeguarded?

Any engagement with patients involves a cost in dollars and time. You need to think about this. And what at the limitations of the platform? What are you prepared to compromise on?
Application and orientation is important to so that people are clear of expectations. There is a one page applications that sets out role description and site guidelines, rules for participation, hat is acceptable posting and process for removal.

Offer a more formal PFCC role to all patient families. Obtain broad responses for developing programs and processes, They have department specific surveys as well as more general surveys. And they are using survey monkey for this.  They survey on things like food, nursing bedside reporting, new patient room furnishings, patient snack bag options. And also to look at the demographics of the membership of the E-Council.

Recruitment. They have 70 – 100 members. And there is an application form but membership is self-selected.  They are looking to increase their numbers. They have invited all their family centred care programs including family advisory council, parent mentoring program, quality of life steering council and family resource centre. They also use pharmacy and social work and volunteer services to promote the E-Council. They have recruiting fairs and promote this in the reception areas, housing and public areas as well as the St Jude’s newsletter. They want families in active care, after care and those survivors as well as people in bereavement. They also want the E-Council to reflect the demographics of their patient community.

Recruitment and engagement of members Is key. It is important to stay true to the purpose of the group it is not a facilitated support group, it is not for medical advice and also ot for advocacy. They note that there is a need for additional language. Spanish will be introduced as this is the second most common language spoken.

They are very keen to see members of the E-Council become members of the Family Advisory Council (FAC) as well but recognise that travel to Memphis for the month face to face meeting is not always possible for people. Distance and time commitment are really issues that prevent people from engagement in the Family Advisory Council.

The FAC has skill sets and time commitments that means that there is a selection process. So some people may not be the right fit for the FAC so they are encouraged to join the E-Council.
So people log into the site and it is private, members only. People cannot leave anonymous feedback in the current system.

Engagement survey – to find out more about the group members and identify their needs and interest. This is important also to improve the sites design and functionality. They asked questions about navigation of the site, relevance of discussion questions to their personal experiences, receiving feedback, subgroups smaller discussion groups, and interest in expert-led discussions groups. They will share the survey and the result on their website if you are interested in this.

Experiences survey to assess the diversity of members and their treatment status as well a experience with clinics services and departments.

So, if you are considering developing a Council...

They suggest you need to think about the following things -

What are you looking to achieve, consensus view or a variety of views> what is the level of influence they will have and how will this be fed into the leadership of the service? How can members submit ideas? How to prioritise and coordinate your surveys? What are you doing to ensure that the E-Council has the skills to meaningfully participate? Is there a leadership structure similar to face to face Advisory Councils? What is the process for selecting these people? Are there specific skill sets and experiences you want to target? And will you have criterial for exclusion? And what about the level of participation? How do you manage the tension between providing flexible engagement and demanding too much? And how will yu address negative comments? Who moderates the group? How do you manage emotional responses?

They use Group site (www.groupsite.com) and there is a modest monthly cost.

Darlene Cox

International Patient and Family Centrered Care Conference #2

Collaborating with patient and family advisory council during major budget cuts and work redesign – Vanderbilt University Medical Center, Nashville TN

So I was drawn to this group not only to listen to Tennessee accents but also to hear how an organisation has partnered with consumers in one of the most difficult aspects of health care – budget cuts. The increasing pressure on the health dollar is a universal issue. Care costs more, and with the increase in non-communicable diseases across the western world we are seeing surges in demand for health care. We are not immune to this in Canberra. And as much of our health care is funded through taxation and co-payments the title of the presentation is apt: we are all in this together. So how can consumers contribute to these touch decisions?

Terrell Smith is from Alabama and her gorgeous accent didn’t disappoint! We do not want to talk about budget cuts in health care but it is a reality in the US. This is looking at academic medical centres as health reform which is having a tremendous impact on these services.

Fee for service model dominates the US health system, although this is better described as a a disease treatment system in the US and not a health care system. This payment model did not present incentive for keeping you well. Doctors were requesting more tests to confirm diagnosis in response to the increased rates of litigation. So defensive medicine is alive and well. But there is a disparity of health outcomes in the US, those people who have money and education have a longer life expectancy.

There is waste in the health system. 40c in the health dollar in the US is spent on chronic conditions and 15-20% is spent on potentially avoidable complications. So better management of people with these diseases and improving the design of services is one of the ways in which improvements can be made for the bottom line as well as health outcomes.

University medical centres have three areas of focus: Healthcare, research and education. Cleveland Clinic 44,000 employees and staff account for half of the costs.

Moody’s investors service shows declines in revenue in hospitals for the past ten years, so who would invest in health care at the moment?

How can value based care change this? Vanderbilt is looking to focus on consumers receiving everything they need and nothing they don’t.

Vanderbilt quietness initiative 40% wake you up lab tests might not be critical and they are looking to reduce these. Has two benefits, improves the patient experience and protects sleep but also removes the costs of pathology that is unnecessary and not contributing  to improving patient care.

The AAMC Framework Continuum of care Vanderbilt Heart’s Proposed Interventions along AAMCs framework was put on the screen and it showed that patient and family engagement was core to
Clear communication has to be on everyone’s radar and health literacy is critical to improve, shared decisions making, teach back

Council volunteers to teach the nurse to practice teach back.  A great investment of time – are your patients
Vanderbilt experienced $130m in reduction last year. This financial year they will reduce by a further $150m. Not sure what proportion this is of their total budget but it seems like a lot of money to me!

Reduced 1000 FTE, early retirement and had to lay 400-500 people off. No accrual vacation, did not accrue 3 days of vacation, ended sick leave cash out if you left the org, drug utilisation, discretional spending (cell phones), travel if you are speaking at a conference, put off minor construction.

Wanted to add another element to considering this work as there are things that the staff cannot see.
Maryann was Chair of the Advisory Council for four years. You can lower cost of health care by having patient and family advisors (who are volunteers) and listening to their views on your service.  Maryanne is a CPA and health care is a learned proposition for her and it is incredibly meaningful to her.

There are three Advisory Councils at Vanderbilt. One for Children’s Hospital. The one for the adult hospital started on 2006 and is vital to leadership of the hospital. Also have a Council for Behavioural Care (psychiatric hospital). The CEO and Chief Nursing Officer are there for each meeting. They respond as necessary but mostly are listening. They investigate all the issues the Council picks up. There is good communication and it is a trusted relationship.

All three Councils were brought together to consider the issues around the billing process. The billing process is an area for improvement in most hospitals across America.

One man accesses multiple clinics but is never checked in the same way. This began a focus on standardising the appointments processes.

They put up a SLIDE that provided an overview of the Clinic Operating Model Redesign: Access, check in, wait times, physician encounter and check out and follow up. Good questions on this slide to consider the patient experience

Call management for ambulatory care clinics (eg diabetes, heart) – there were 940,000 calls annually and there was a 25% abandonment rate. There was no performance measurement. But after the redesign there was 4% abandonment and active daily management and data tracking.

Our Promise to You: Vanderbilt Patient and Family Promise. Took all of the pillars that Vanderbilt is based on and applied this to patient experience. We make those we serve our highest priority. This is a really nice idea and I am definitely going to follow this up for heath services when I get back to Canberra.

They hold Council meeting open forums on a quarterly basis where they discuss recent hospital and clinic experiences with senior leadership. They also have the opportunity to share what they are hearing for the community. And in turn they can give correct information to their friends and networks. Also discuss issues of interest to the Council regarding perceived needs. Discussions are generally positive, looking at ways to improve rather than dwelling on those

They are widely represented on hospital committees including Patient Education Council, Patient Experience and Service Improvement Council, HCAHPS Improvement Working Group, Quality and Safety Council, Food Service Advisory Committee, My Health at Vanderbilt, Strategic Planning Design Shops, PCORI Research Grant Steering committees.

Introduction to patient promise is part of the staff induction and they also talk about the importance of patient and family centred care. Clear communication and teachback are promoted to all staff in induction.
Question: How do you support your patient advisors? They do this by helping How to tell your story in 3 minutes.

Question: How do you recruit to your Council? Put out a call to social workers, physicians, nurses and ask them to nominate someone who they have had contact with who they think would be good to participate in the Advisory Council.

Darlene Cox

International Patient and Family Centred Care Conference #1

There are over 700 people registered for the conference. There are 300 people from nine provinces across Canada and many people from the US. There are people from ten other countries to share experiences and insights including Afghanistan, Cameroon, Denmark, Qatar, Sierra Leone UK and Australia.

The conference started with a traditional Salish welcome and blessing from Elder Roberta Price.

The health professionals attending the conference work within and across disciplines with patients and families. There is 170 patient and family advisors. These individual are partners for improvement and transformation and grateful the work they do to improve health services. Need to build the depth of partnerships with consumers so that we can improve the safety and quality of health care.

Now I had thought I would tweet throughout the conference but there is no wifi! And as I have come from afar I have not organised internet access from my phone. So, instead I will blog. Excuse the typos and incomplete sentences. I will correct these (in time).

Mr TerryLake, Minister of Health of British Colombia

Health care developed around big buildings where you went when you were broken and you came out foxed. So focussed on moving patients through the big system that we forget about the person experiencing care and their families. When we put patients at the centre of care we change the dynamics. It is a cornerstone in the Ministry of Health strategic plan and they strive to deliver care that is built around the individual and not around the provider and not about the administration. He has committed to a sustained focus on improving services to meet the needs of families. Moving from disease focus to patient focussed and recognised that there will need to be a change management approach to support health professionals as well as patients and families to embrace the change. When you are trying to get through your day and get all your tasks done you can be task focused but you need to stop and think about the ae that you are delivering. Put the brakes on and think in the moment.

Patients as Partners in BC focuses on helping patients manage their own care and gave them an opportunity to learn more about the health system.

They have navigators for indigenous people as well as cancer care. They provide support for things like arranging transport, medication and discharge planning. Interesting, I think the role of health navigators is a growing area as care becomes more complex and fragmented across settings and we become sicker. We have certainly been talking about the need for this role in Canberra. Mostly these roles are filled by RNs (known as care coordinators) but I think there is scope to have consumer peer workers too.

Better together campaign proud to be blazing a trail to remove restrictions on visiting hours. St Pauls Hospital (Providence Health) are first in BC to drop the visiting hour restrictions. Patients and families engaged in help to fill in the blanks and advocate on their behalf. Infection rates drop when visits visit freely and staff engagement improves, rates of fall decrease and there is a reduction in medical error, emotional hard inconsistencies in care and transition to other settings.
Dianne Doyle, CEO of Providence Health Care

Culture of care and the deep commitment of Providence Health Care to patient and family centred care. This started 4 years ago where IPFCC reviewed Providence work and assessed structures and provided recommendations. Strategic planning identified patient centred care as a strategic priority using the experience of the Institute and developed an action pan. This is about bedding patient and family partners and set a plan to have 100 people in these roles across the organisations. The Board has two patient and family partners and sit as members of quality and accountability committee of the board and also a Patients as Partners. This group developed the Family Presence Policy (visitation). They have also considered how their staff present to visitors and families and patient and standardisation of uniforms has been introduce and name tags so that names and roles is easily identified., Communication is important work and they get a great deal of feedback,. They have developed patient information and cardiac is doing journey mapping. Code Help is an opportunity to ensure that 24/7 that if they feel that they are not getting the are that they need that they can phone to make sure their expectations and needs are being met.

This is not about public relations, they are serious about reflecting on patient care. The retreat with senior staff includes patients and family members to share their stories about how the service failed their families.

There are three areas they are developing: started bed site multidisciplinary handover, now include patients in recruitment of staff and developing indicators to monitor impact their work is making

Ms Leilani Schweitzer - https://twitter.com/LeilaniS

Firstly, let me say that this was one of the most remarkable speeches I have heard. And in my 15+ years in the consumer movement I have heard many stories and listened to many speeches about th need to improve the quality and safety of health care.
What follows are my notes from Leilani's speech.
Leilani shared the story of her loss. Her 20 month old son, Gabriel, died. She started by saying that on Thursday he was sick and on Tuesday he was dead. Alarms interrupted her sleep. She had already experienced sleeplessness at the local hospital in reno before they had been transferred. She was relieved they were at Stamford. The nurse turned off the sound of the monitors next to his bed so taht they could both sleep a little bit. Unknowingly the nurse, acting out of compassion, had done more, she hadn’t only turned off the alarms next to Gabriel's bed but also at nurses’ station.  So when Gabriel’s heart stopped beating there were not sounds to alert staff to this. Several minutes had passed and she was jerked awake to a room full of people and panic. This happened as there was not a safeguard in the alarm system.

Leilani is a health care outsider, like me she does not have a medical degree and has not spent countless hours in medical rotations. She says she could never undertake the difficult job that doctors and nurses do. Her son’s story is her credential and she tells it to make a difference. She tells the story to shift peoples’ thinking and because, she says, we need a new narrative.

But where does improvement and change happen? We are stuck between the way things are and the way we want them to be. We want our heads in the clouds ad our feet firmly on the ground. How to we shift the ground and bring the two together?

Leilani shared her wish list – now I didn’t see this due to my poor eyesight but I will certainly check it out as there was laughter in the room.

Choose to listen. Choose to be transparent. You don’t have to agree to the status quo.

We cannot have a health system that is based on the needs of clinicians. We need to have a system that meets the needs of patients, clinicians and administrations. We need to value everyone’s insights and perspectives. Clinicians’ motivations cannot be ignored. They bring their struggles motivations and humanity to the hospital everyday along with their skills and expertise. We need to honour their role as we need to value the experience and insight that consumers bring.

This is the only way we can understands the issues and find real, long term solutions to these intractable problems.

Sometime the power is not in the story but in the telling of the story. We need to encourage people to tell their stories and encourage staff to listen. We need health services to hear every story and not only the loudest and not only the ones that confirm their assumptions. These stories are the truth of the environment. We cannot listen to them in isolation because they all overlap. We need to track the issues

Leilani works as Patient Liaison, she works with people when there are has not gone according to plan. She has learnt that the first telling, the first quick account tells us very much. It is only after many tellings and research that we learn the whole story. People need to understand all aspects of their medical care, particularly the parts that did not go according to plan. She works with the vulnerability of patients and families as well as staff.

Stamford investigated and let all other hospitals using this system know about the dangers. They looked further than the nurse’s actions.

Leilani advocates for transparency as it helps us identify system errors and act to fix them. Transparency is a lens. It can help us understand where we want to go, where we need to go.

Understanding the environment is critical to improving the quality and safety f health care. In Gabriel’s case there were issues around the programming of the alarms, alarm fatigue, and a nurse’s call for help was not responded to,

 A young doctor spoke nervously at her. This doctor was hopelessly unprepared to deal with the situation. Leilani eventually told her to shut up. Death is a full stop for a patient in a hospital bed bit it is a terrible beginning for everyone left in the room. Hospitals should extend their care to these people as fall out is slow, painful and toxic. It is also contagious.

We need to stop protecting patients from understanding the dangers in health care. We are the most untapped resources in health care, we have so much to offer as we have so very much to gain. We cannot help if we do not know the full story. Change is so slow and this can be discouraging although Leilani is optimistic.

This was a spectacularly powerful story full of forgiveness, compassion and kindness. There were many tears in the audience.  I felt privileged to hear her speak
Darlene Cox