Health Consumers Queensland Annual Forum 2017

I recently attended the annual forum of Health Consumers Queensland (HCQ). It was held in Townsville, in North Queensland. The theme of the forum was Power and Passion: Culture Change through Consumer Empowerment and Partnerships.

Th team and HCQ will make videos, transcripts, and visual presentations from all sessions available soon.

Over the day I took notes and am posting my thoughts and take away messages in a series of blog posts.

Mark Tucker Evans, Chair, HCQ

The forum opened with a welcome to attendees and acknowledged the Hospital and Health Services (HHS) who supported consumers to attend as well as staff from HSS’s, Primary Health Networks, the Department of Health, a range of non-government organisations and private services. He thanked the consumers and carers on the reference group who developed the program. He reflected that there was a rich and diverse range of participants which would add value to the day. Mark said: "the Forum is about exploring opportunities for meaningful consumer engagement and demonstrations of how it changes culture of organisations and improves the delivery of patient centred care".

Mark also reflected that the Minister launched the Queensland Advancing Health 2026 at the inaugural forum in 2016 and would be at the forum today to give a report on achievement in the past 12 months.

Professor Gracelyn Smallwood – conducted the welcome to country and reflected on 50 years of working in th healh sector, as a nurse including her training and now being involved in training others.

Reflecting on closing the gap she said: “We all have to come together in a collaborative approach, public sector, non-government sector and corporate private sector and then we can move mountains.” Prof Smallwood was also very clear that “A tripartite approach is needed to close the gap. Not paternalism, it’s not about equality, it’s about equity.”

Melissa Fox, Chief Executive Officer

Melissa Fox introduced a short session highlighting the work of the HCQ.  HCQ began in 2008 initially as a Ministerial Advisory Committee. With the funding of the Queensland Government in the past few years they have been able to deepen the work they do in supporting strong consumer participation. The Board and staff of HCQ recognise that the Government has invested heavily in establishing the organisation. They received a three year funding $2.6m in 2015 over three years. Melissa introduced each staff member and they each spent a a few minutes talking about their work, reflecting on highlights and challenges in the past two years since they came a funded organisation.

Jo Sherring, Lin Hinspeter (consumer) – Raising health staff awareness about health literacy issues – impact of a consumer video on staff perceptions of health literacy. Townsville HHS

Jo Sherring is Clinical Lead for Townsville HHS. Lin is a retired nurse and consumer rep. They have been working to raise awareness of the importance of health literacy in the planning and delivery of heath care.

Staff truly believe they are communicating well and that patients have knowledge and understanding but this is not always the case. With this in mind the patient information and Health Literacy group at the Townsville Hospital decided to make a video for patients and their families on te difficulty of understanding medical information.

• ·        Consumers and carers were given common medical terms and asked to describe what it meant. Words included: triage, NUM, observations, oedemema, consultant, diuretic, titrate, intravenous, handover, multidisciplinary, analgesic, UTI, femur, hypertension, coronary, evidence based, self-care.
• ·      They were also asked what was it they would like health staff to know and to understand about them to improve their care.

The video has been shown in staff orientation, during Heatlh Literacy week and in staff training.

The key messages were excellent:

• It’s not our job to know your language. It’s your job to help us understand. Use plain language with everyone people can’t take care of their health if they can’t understanding it. How you provide information to us is important.
• There are lots of words and includes description and diagnose that is communicated quickly and we don’t; have enough time to process it. And we don’t always know the right questions to ask.
• Make sure the message you give is the message received. When a person is anxious they do not always here very well and it is easy to misinterpret.

Darlene Cox

Executive Director

Update - University of Canberra Public Hospital

Invitation to the event

On Monday 8 February HCCA staff attended the smoking ceremony and sod turning for the University of Canberra Public Hospital, the new rehabilitation hospital which is being built on the grounds of the University of Canberra. 

HCCA has been very involved with this project. Our involvement dates back to 2010 when we first proposed a sub-acute hospital to the then Minister for Health, Katy Gallagher.

Since that time we have undertaken plenty of research, reading articles, attending conferences, talking to consumers about their experience, and visiting similar facilities in other places. All of this informs the positions we take when we advocate for design of the building - including car parks - as well as the way care will be delivered. 

Yelin Hung, Darlene Cox and Nick Wales at the site of UCPH.

Consumer representatives have participated in User Groups to date. These are groups that bring together consumers and clinicians to consider planning issues. User groups have been focussed on many aspects of the design, including the main foyer, hydrotherapy, pharmacy, equipment loans, medical imaging inpatient rooms, rehabilitation day services and pathology.

An important aspect of the event was a smoking ceremony, to cleanse and refresh the land before construction begins.

Duncan Smoth from Wiradjuri Echoes conducting the smoking ceremony

Minister for Health, Simon Corbell

Following the smoking ceremony, both Andrew Barr MLA, the Chief Minster and Simon Corbell MLA, the Minister of Health spoke, outlining the role the University of Canberra Public Hospital will play in helping improve access to health services for the ACT. The Chief Minister also stated that health is the Government's number one priority. 

Finally to mark the official start to construction of the University of Canberra Public Hospital Andrew Barr MLA, Simon Corbell MLA, Meegan Fitzharris MLA, Chris Bourke MLA and Vice Chancellor Professor Stephen Parker turned the first sod on the site. And yes, there were a few jokes about how many Minsiters and Vice Chancellors it takes to turn a sod.

Handshakes all round for the sod turning.

Work is expected to start in the coming weeks, with the fence up around the site on the corner of Aikman and Ginninderra Drives in Bruce. The site is clearly marked with a banner on the whole external fence.

Work is also continuing on the Final Sketch Plan for the hospital with great involvement from consumer representatives. Last week the consumer representatives that will be involved in the User Groups came along to and induction to have a look at the current plans and what will be involved in the User Groups. It’s fantastic to have so much involvement from our members to help improve the design.

The current date for completion and opening of University of Canberra Public Hospital will is early 2018.

There is more information online, including this video.

Darlene Cox

Executive Director

Consumer-led Ideas for Better Primary Health Care – CHF Workshop

On the 19^th August, I had the pleasure of attending a workshop on the future of primary health care, organised by the Consumers’ Health Forum of Australia (CHF). The program for the day included an impressive line up of speakers, including the current Commonwealth Minister for Health, who demonstrated energy and commitment to reform.

Proceedings kicked off with presentations from the Chairs of the two connected large scale reviews currently underway: the review of the Medicare Benefits Schedule and the Primary Health Care review. It was encouraging to hear that the two reviews are not being conducted in isolation from one another, with crossover in membership designed to keep watch on changes in one area that may have significant consequences for the other. Both speakers emphasised that their tasks were not about savings, but about better “value” health care (focused on value for the system rather than the individual consumer). Both also commented on the importance of providing and measuring quality care through methods such as increasing use of clinical guidelines. Although there was a significant focus on people with chronic conditions and complex needs, how to deal with conflicting care guidelines for these people was not mentioned.

The focus on costs continued with the presentation from the private health insurance industry representative. The speaker described two programs focused on reducing costs associated with avoidable hospitalisations. The first targeted health fund members with chronic illness and repeated hospital presentations, providing integrated care wrapped around the consumer and GP. Services included phone support, care navigation and flexible funds to be used to improve health literacy and help ensure appropriate care. The second targeted consumers being discharged from hospital, providing three brief follow-ups to reconnect people with their primary health care providers. Both programs were described as having consumers at their heart and clearly have great potential to improve outcomes. It was therefore a bit disappointing to see the “outcomes” box on the evaluation slide describe the result as a reduction in claims rather than an improvement in health.

For me, the contrasting presentation was from the Australian Health and Hospitals Association speaker. She took the approach that incentivising health professionals to engage in what should be good business practice was not a good use of health funds. Reforms need to focus on the rising out-of-pocket costs for consumers as well as the system costs and focus on achieving outcomes rather than rewarding the business of carrying out health care. The business example was taken further with discussion of outdated IT practices hampering progress. This includes problems with data sharing and a lack of interoperability between proprietary health-related software packages.

The main theme of the day therefore turned out to be “how can we squeeze better value out of what we’re already doing?” Costs are an important part of health care but I am bothered when they are wrapped up as “person-centredness” as it can lead to selective care and ignores what matters for consumers. Rewarding outcomes sounds like a smarter move than activity-based incentives, but what happens to the consumers with very complex needs and/or multimorbidity who may not be able to achieve the outcome targets that get doctors the rewards? There is a risk that these consumers may face limited choice of health professionals willing to take them on.

The other theme that emerged was health literacy. I was interested in the conversation regarding health literacy as it seemed to be discussed as the way to ensure people could navigate the health system. Whilst it is true that improving health literacy can help consumers understand the most appropriate health care choices, this does not automatically equate to an ability to navigate the system or make the lowest cost choices. Factors such as complex conditions and location can also play a strong role in where consumers turn for health care. 

Michelle Banfield
Vice President, HCCA

Cancer Voices Advocate in NSW Parliament

Kathy Smith was elected at the March 2015 election in New South Wales and is now the member for the Gosford Electorate.

Ms Smith recently gave her inaugural speech in the Legislative Assembly. 

We have provided an excerpt from this speech for those people interested in           the consumer experience of cancer services and the why we advocate for improved access. While Ms Smith is talking about the Central Coast many of the same issues apply to the Capital Region around Canberra. 



Earlier, in 1996, I had been diagnosed with cancer and during treatment I had become aware of an elderly lady who had to travel from Wyong to the Royal Prince Alfred Hospital for radiotherapy treatment each day for six weeks. She travelled by bus and train, and what torture that must have been for her. I was living in Hornsby at the time of my diagnosis and I was fortunate enough to be able to afford private radiotherapy treatment only 10 minutes away from home and my place of work. Silly or not, I was left with a feeling of guilt knowing that this much older lady was having to struggle to travel for treatment while I could be driven for mine without any effort on my part. 

On moving to the Central Coast, I was appalled to find that the only change to the local situation concerning radiotherapy treatment was the establishment of a private facility. However, that facility cost cancer patients thousands of dollars if they were to have treatment locally rather than travelling for public—that is, no cost to patient—treatment. As we were in a low socio-economic area, this was an impossible situation for some and many people were incurring debt to pay for treatment. That debt would mean many years of repayments and many years of depriving themselves in order to make them. Others were forgoing this lifesaving treatment altogether in the hope that the doctors were wrong. 

Being a person who always spoke up for the underdog and who took on the battles of those not able to fight for themselves, it was inevitable that I would do something to draw attention to this dreadful situation and a group of us began campaigning for the provision of public radiotherapy locally in 2006. It was an intense campaign, and it was only me and my very loyal and beautiful friend Kimberly Bates who continued through to the end. We had support from the then members for Wyong and Gosford, David Harris and Marie Andrews. In April 2010, former Prime Minister Kevin Rudd and Premier Kristina Keneally came to Gosford to announce joint State and Federal funding of more than $38 million for the construction of the Central Coast Cancer Centre, which of course included the public radiotherapy facilities for which we had battled so hard. On that day I had been discharged from hospital following the removal of a mouth cancer for less than 24 hours and Mr Rudd must have thought I had a very unusual way of speaking. 

The Prime Minister praised the actions of consumer advocates for bringing the problem to the Government's attention. He pointed out that even though politicians think they know what is needed by the community this knowledge does not always tally with what the public really wants. It had been made very clear to us by senior politicians at both State and Federal levels that without the public action the Central Coast would not have been in the running for public radiotherapy for many years. As I recall, we were number seven on the list, so public advocacy works. Today I am pleased to report that the number of people on the Central Coast receiving lifesaving radiotherapy has increased dramatically—I understand by about 22 per cent. This is not the number of people deciding to be treated locally rather than travelling for treatment; this is an increase in the number of people who previously would not have had any treatment. It is impossible to say how many of these people would have missed out or who would not have survived under the previous arrangements. However, statistics demonstrate what a tremendous investment by the Labor Government in cancer survival this public facility has been. So, fellow members, let us all listen to the public advocates in our area when they come to us with an issue. Many lives may be helped. 

The radiotherapy campaign on the Central Coast also introduced to me broader State and national issues that were in need of cancer consumer advocacy. Cancer directly affects one in three of us, but many more indirectly when our friends and family are impacted by this disease. While I had been campaigning on the Central Coast I had also been working as a consumer advocate with the Cancer Voices movement in Australia. Cancer Voices is the largest truly independent, non-funded cancer consumer organisation in Australia. I became the chair of Cancer Voices NSW as well as an executive committee member of Cancer Voices Australia. During my time with Cancer Voices, many battles were fought and won at both State and Federal levels. There is still much to be done in the cancer area, but I came to realise that the time had come to return to my own backyard and to work to the best of my abilities to continue to improve the lives of people on the Central Coast. There was never any question but that that would be done with the Labor Party.

ACT Health - Partnering with Consumers

Last week ACT Health underwent accreditation against the new national standards.

I was invited to speak at the opening meeting with the surveyors. My speaking notes are posted here for the information. Throughout the week we had the opportunity to speak with the surveyors in more details about the work of the Health Directorate and staff at Canberra Hospital and Health Services about how they partner with consumers at three levels, as patient, consumers and as citizens.

Darlene Cox
Executive Director

The Health Care Consumers’ Association is the longest running health consumer group in Australia. We receive funding from ACT Health to train and support consumer representatives and to provide consumer perspectives on policy and operational matters.

We do not have Consumer Advisory Committees like other health services. Consumer and carer representatives and consumer organisations are heavily embedded in ACT Health and health services. The consumer voice is heard across all levels of the health service - as patients and carers, as consumer representatives, through consultation with consumer groups and the broader community.
HCCA supports more than 50 consumer representatives who are participating in over 100 committees across ACT Health. There are also more than Mental Health Consumer Reps and Carer Reps.

We run training sessions 3 times a year to recruit new members of the community who are interested in becoming involved. I want to touch on a few of our achievements.

Consumer representation has been a constant through quality and safety processes and clinical governance.

We have had a consumer representative on the Canberra Hospital Clinical Review Committee for almost ten years which is significant.

We also have consumer reps on the Interagency Clinical Review Committee, Quality and Safety Committees, Clinical Ethics Committee, Awards Panels, and the Medical and Dental Appointments Committee.

The consumer perspective is also valued in the corporate governance with consumer representatives on the Executive Directors Council, and Executive Council as well as the Local Hospital Network Council.

We also have consumers as members of selection panels for senior staff, including Clinical Directors, the Deputy Director General and Director General positions, a well-established indicator that an organisation has a culture of consumer centred care.
Consultation with consumers and carers is embedded in the policy development and review processes.

We also have significant involvement of consumers in the Health Infrastructure Program with active involvement of consumers in User Groups and project management committees. There is also consumer and community consultation to inform the designs and models of care. There are consumer representatives in the governance committees for HIP, so consumer voices are part of the strategic discussions and decisions.

Since the introduction of the national standards we have had Consumer Leads. This is a group of experienced and well connected consumer representative who take on a leadership role. We are very proud of this model and it reflects the commitment of ACT Health to partnering with consumers.

This year the Consumer Leads are participating in the ACT Leadership Network, a welcome development and builds on the involvement of consumers in training of ACT health staff.

We have built strong relationships and have a good working model of participation that works for us.
We have enthusiasm and commitment to continue to improve the way in which the consumer voice shapes the services for our community so that we have health services that are safety and consistently of a high quality.

Consumer Representatives Training

The Health Care Consumers’ Association will be running our next Consumer Representatives Training on Saturday 13 June and Saturday 20 June 2015 from 9am-4pm.

This free two-day course provides you with the opportunity to nominate as a Consumer Representative on a health service committee and make a valuable contribution to improve health services. You will learn more about the ACT Health System from a consumer perspective and how to use this knowledge to make effective systemic change.

The training includes:

Introduction to Consumer Perspectives         Navigating the Health System

Introduction to Consumer Participation         Effective Consumer Representation

Patient Safety Issues

To register: Tel: 6230 7800 or Email: sandraavila@hcca.org.au

Venue: HCCA Meeting Room, ACT Sports House, 100 Maitland Street, Hackett, ACT, 2602

Training courses are held several times a year. If you miss this one, please ask about future training dates.

Kate Gorman

Project Officer

Consumer Representatives Program

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 49^th parallel as they have a model that is costly, disconnected and specialty –centric. Now, the 49^th 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

@darlenecox

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

@darlenecox

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.

www.Ipfcc.org/bettertogether

Darlene Cox

@darlenecox

International Patient and Family Centred Care Conference #3

Using an E-Council – St Jude Children’s Research Hospital, Memphis TN

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
@darlenecox