CFAN Annual Workshop: Sharing What's Working

Hello Everyone,

I am happy to share with you all the agenda for our 2016 annual workshop (see below) in Halifax on Sunday October 23rd. There are still a few elements to finalize but we think we have come up with an agenda that should allow for lots of sharing of not only information but insights and wisdom. Sue Robins (Sunny Hill) and Catherine Gunn (IWK) were especially helpful in putting the agenda together.

We are also planning to spend some time--mainly at the end of the day--getting ourselves better organized to move forward. Over the last 15 years we have accomplished a good deal, but we know we need to be in closer touch with all the councils, organizations, and individuals across Canada who are or want to be part of CFAN. One change we will be proposing is that every council or organization in the network will be asked to identify one or two reps who will be listed on the website and take part in regular two-way communication to ensure that everyone is "in the loop." We will also be proposing some bylaw changes (to be distributed by email well before we meet) that we hope will help us be more efficient, effective, and better connected. 

CAPHC is once again supporting our workshop by making it free to anyone attending just the workshop and not the CAPHC conference itself. Those registered for the conference attend at no additional fee. And families who are not staff members of the organizations they advise get 50% off the conference registration fee if they use a code which we can provide; please email me at frankgavin@rogers.com. 

The conference itself has many sessions that will be of particular interest to members of our network, and we are certainly welcome to participate fully in all the sessions we attend. There will also be many posters about aspects of family-centred care (one of the four poster categories.) Thanks to Scott Wilson, parent from from Glenrose, for joining this year's poster judging panel. Information about the conference is available at http://conference.caphc.org/conf2016/index

Both of our wonderful long-term co-chairs (Kate Robson and Laura Williams) have had to leave office because of other responsibilities. The recent good news is that Karen Sappleton from SickKids has agreed to be one of our co-chairs beginning this fall. We will be looking for another co-chair in the fall but will first nail down the terms of reference and bylaws.

We hope many of you can come to Halifax. Once we know who's coming, we will send everyone on the list of workshop registrants further information about social events before and after the workshop. But we want to make sure that even if you can't come to beautiful, historical, and friendly Halifax, you can participate as fully as you wish and are able to in the work we are and will be doing.

Please feel free to pass this on to anyone you think might be interested and please let me know if have any questions or suggestions.

Best wishes,

Frank Gavin

National Liaison, Canadian Family Advisory Network

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Agenda for CFAN Annual Workshop: “Sharing What’s Working”

October 23, 2016

 

7:00 to 8:00: Breakfast

8:00 to 8:45: Welcome, Introductions, Overview of the Day

8:45 to 9:15: Sydney’s Spot—A Family Story

9:15 to 9:40: CFAN: Past Accomplishments, Present Challenges, and Future Opportunities: Frank Gavin (National Liaison)

9:40 to 10:00: Best Practices Update: Tashmina Hall (McMaster Children’s FAC) and Fiona Randerson (BC Children’s)

10:00 to 10:30: Morning Break and Informal Networking

10:30 to 11:15: Using Social Media to Connect, Inform, and Effect Change--Christine Chambers, Canada Research Chair in Children's Pain at Dalhousie University and IWK

11:15 to 12:30: Small Group Discussions on Communicating with Staff and Families (Challenges and Successes) at Each Represented Organization.

12:30 to 1:30: Lunch and Informal Networking

1:30 to 2:00: Reports from the Small Groups

2:00 to 3:15: Engaging—and Being Engaged by—Youth: Panelists from the YAC at IWK and Other Health Centres

3:15-3:30: Break

3:30 to 4:00: Directions and Leadership for CFAN

Launch Announcement: CFAN Best Practices in Patient and Family Centred Care Working Group

One of our favourite parts of our annual CFAN meeting is having the chance to meet with other patient and family centred care champions and share information about what we're doing.  Although this type of sharing is very much going to remain part of our annual meeting, we've realized there's no reason to wait until then to connect!  So we have launched a new Working Group which will be dedicated to creating opportunities for family advisors to connect and support each other. 

If you are passionate about Patient and Family Centred Care, please consider this your invitation to join CFAN’s Best Practices in Patient and Family Centred Care Working Group. Co-chaired by Tashmina Hall, Chair of the Family Advisory Council at McMaster Children’s Hospital, and Fiona Randerson, Family Advisor at BC Children’s Hospital, this group will meet via teleconference on a quarterly basis.  It will be a friendly forum for family advisors to learn from each other’s experiences and share about their patient and family centred care initiatives. The hope is that we will collectively become an important resource that will spark ideas and generate solutions while fostering a sense of community.  It is not intended for the implementation of guidelines for any specific project or initiative.

In order to move forward, we ask that you please indicate your interest in joining by contacting Fiona Randerson at fiona.randerson@cw.bc.ca.  

Our first teleconference call will take place on June 7th at 1pm (Eastern) and we very much hope that you will be able to participate.  This call will be a wonderful opportunity to connect with other champions of patient and family centred care from across the country.

CHILD-BRIGHT: An Overview for CFAN

At the end of March the Canadian Institutes of Health Research (CIHR), the largest funder of health research in Canada, announced that five national networks will receive nearly $25 million each (half from CIHR and half raised by the networks themselves) to address the needs of people living with chronic conditions and their families. One of the five—and the only one focused on children and youth—is CHILD-BRIGHT (Child Health Innovations Limiting Disability—Brain Research Improving Growth and Healthy Trajectories). CFAN wrote two letters of support for the project during the application phases and helped to gather responses to a national survey of parents and youth nearly a year ago. Parents linked to CFAN will have many opportunities to become involved in the project over the next five years. In fact, the project can be successful only with wide and deep participation of youth and parents.

CHILD-BRIGHT is a SPOR (Strategy for Patient-Oriented Research) initiative, which means that all aspects of the research (setting priorities, deciding on the research questions, analyzing the results, advocating for policy changes based on the research results, etc.) will be conducted with patients, a term that is the SPOR context includes families and other informal caregivers.

CHILD-BRIGHT will have three themes, chosen partly from the survey responses of parents and youth:

1.     BRIGHT Beginnings, which will focus on innovative early therapies

2.     BRIGHT Supports, which will focus on mental health and wellness support to children and youth with brain-based disabilities

3.     BRIGHT Futures, which will focus on key transition periods and the help families need throughout the long trajectory of the child’s—and the family’s—development.

Children with a range of brain-based conditions (autism, cerebral palsy, Down syndrome, ADHD, learning difficulties, etc.) and children at particular risk of brain-based disability, often as a result of being born premature, will be included.

There will be many and various opportunities for children, youth, and parents to become involved, and as in all SPOR projects patients and family members who participate will be appropriately remunerated. Donna Thomson, Dana Florence, and I are three parents who are among the co-investigators, and I will be chairing the Citizen Engagement Council in the first phase of the project. The lead investigators are Annette Majnemer (McGill), Steven Miller (SickKids), and Dan Goldowitz (UBC). Please contact me (frankgavin@rogers.com) if you have any questions or are interested in becoming involved.

 

Frank Gavin

National Liaison, CFAN

 

New Roles for Families in Research to Improve Child and Youth Health

We devoted the afternoon of our CFAN Symposium to a discussion of family engagement in research. The packed room (and very positive feedback) shows how interested we all are in this discussion.  To keep the discussion going, Frank Gavin (CFAN's national liaison) has these thoughts to share. 

For a very long time (decades? centuries?) families, mainly parents, have contributed to research focused on children’s health in two main ways: by consenting to and facilitating the participation of their own children as research subjects and by responding to surveys, questionnaires and interview questions, thus making themselves research subjects, an odd term since in both situations those who are called “subjects” often feel themselves regarded as “objects.”

Increasingly in the last decade or so—and accelerating very quickly in the last few years—patients and families have been invited and encouraged to participate in quite different capacities in health research, particularly as advisors and as co-investigators. This has been an international movement. Check out, for instance, INVOLVE (http://www.invo.org.uk/ ) in the U.K. and the Patient-Centered Outcomes Research Institute (http://www.pcori.org/) in the U.S. In Canada the Canadian Institutes for Health Research’s (CIHR’s) Strategy for Patient-Oriented Research (http://www.cihr-irsc.gc.ca/e/41204.html) is the largest and best-known (but far from the only) driver of patient—a term that in this context includes the family members and other informal caregivers of patients—participation in all aspects of the research process.

The extensive and often deep involvement of patients in research is intended to ensure that the research directly addresses the needs and priorities of patients and has an important impact on their health and on the health of the system they depend upon. Patient-oriented research makes extensive use not only of the lived experience of patients but of the range of skills, interests, and areas of expertise that patients possess. It requires true partnership and collaboration.

The New Roles

Before identifying what can get in the way of such partnership and collaboration and what families and researchers can do to overcome the barriers, I’ll list some of the new roles family members have begun to play. (Note that in all these roles they are not working alone but with other research team members.)

·     Identifying potential topics

·     Ranking potential topics in order of importance, urgency, or relevance

·     Refining research questions

·     Asking questions, especially “why” and “how” ones

·     Ensuring the language used is understandable—and not alienating—to patients and families

·     Helping to recruit other patients and families as team members

·     Mentoring new patient and family team members

·     Mentoring researchers inexperienced in partnering with patients in this new way

·     Suggesting ways of recruiting patients and families as research subjects

·     Identifying ways to ease the anxiety and confusion of patients and families who are completing questionnaires and surveys (leading to more considered, less guarded responses), e.g. by who will be using it and what use they will be making of it

·     Participating in some interviews

·     Selecting the tools or measures (perhaps especially related to quality of life) that will be used

·     Analyzing the information / data gathered

·     Identifying the most effective ways of communicating information / findings to the public, especially patients and families

·     Participating in knowledge translation (KT) activities

·     Participating in advocacy activities, especially for policy- and decision-makers, arising out of the research findings / recommendations

Problems and Solutions

Here is a partial list of problems or barriers both families and researchers face on making their partnership effective and some solutions:

Being Representative of Families: Family members engaged in patient-oriented research and sometimes in other kinds of research are often explicitly or implicitly regarded as representative of other families. Sometimes they regard themselves in this way, in some cases slipping into such a role. Not being very careful about being a “representative” can be dangerous. If asked to represent other families, ask yourself and your team members how you can have the kind of regular access to a range of families that will help you be representative. Even then, think carefully of what families you cannot—probably for a variety of reasons—contact or represent. It also helps to make sure there are at least two family members on each team. Among other benefits, this reminds everyone that there are many family experiences, perspectives, and voices.

Time and the Pace of Research: Many if not most research projects can take several years to complete. And there are often long periods (e.g. during the time ethics approval is being sought or while data are being collected) when family members of teams may have little if anything to do. These “time-related” realities should prompt everyone to recognize that some family members may be able to play their roles for only a portion of the research project or may have to change their roles. There should also be an explicit plan and a designated “go to person” to insure family members aren’t left out of the loop during periods when they have little to do.

The Language of Research: The language of research might me more specialized, i.e. more unfamiliar to most people, than the language of a particular scientific discipline. Ordinary words, e.g. power, bias, control, etc. don’t have their usual meaning. Some researchers seem to love speaking in code; some have a hard time using plain language, understandably worried, perhaps, that something important will be lost or distorted. Obviously, highly specialized language can be a barrier to people new to this world. Glossaries can help, but more helpful is an explicit commitment to respond readily and un-condescendingly to requests for “translations” or plain-language terms. Families should also be willing to learn some of the more important and frequently used specialized terms since doing so may help them better understand the work they are part of.

Research Methodology: Researchers are often focused on methodology (e.g. sample sizes, inclusion and exclusion criteria, degrees of uncertainty, the sequences of tests, etc.). Researchers can make methodology less opaque by preparing some simple explanations of the most important elements of research methodology, by referring family members to existing accessible resources, by participating in training sessions where they can explain to patients and families why the “how” is so important, and by answering questions clearly collegially. It’s important that such sessions not be “front-loaded” but rather spaced out over the course of the project. Too much information at the start can be more than daunting.

The Place of Stories / Lived Experience: Families sometimes report getting contradictory signals about the place or relevance of their own—or their child’s—experience. They are sometimes encouraged to join because of their “rich lived experience” and then surprised, disappointed, or hurt when they are not invited to contribute or even refer to that experience or when their recounting of part of that experience is or seems to be ignored or discounted. Researchers should discuss with family members at the outset whether and to what degree their experience, often conveyed through stories, should be explicitly shared. And families should also consider at the start whether they would prefer not to disclose particular parts of their experiences. In short, the place of stories should be determined by all, not assumed.

Disappointing Results: Sometimes—often, in fact—research yields answers different from the answers everyone hoped for. A new treatment or a new way of providing care may be no better and may even be worse than the tried and true, however limited the tried and true is. It’s important to know about this potential for disappointment at the outset and to remind oneself of it during the course of the project. Projects with “negative outcomes” also make long-term contributions.

The “Feel Good” Factor: This is still frequently present in research teams that include patients and families as partners. Patient-oriented research is still a new phenomenon and researchers often know that engaging patients and families and having a team that has the attractive look of such engagement are traits funders are looking for and rewarding. All the more reason, then, to make sure the engagement and the work also feel good—and worthwhile—to patients and families. The team should periodically ask what difference this partnership is making to the quality and the applicability of the research. Evaluation tools are very much in the works.

Role Definition: Family members have sometimes been told their role was “to keep the researchers honest” or to “remind the researchers why they are doing what they are doing” or to be “inspiring.” There are obvious problems with such roles. It’s much more helpful for family members and researchers to discuss the roles family members will play as explicitly and realistically as possible, to review those roles during the course of the project, and to negotiate changes.

Money: Most everyone working within national or provincial contexts now agrees that patients and families who provide advice or act as co-investigators for research projects should not only have their expenses covered (travel, meals, childcare, parking, etc.) but also be given some remuneration for their work. Some people, including some family members, would like to see the option to volunteer remain.

As for amounts, there is wide variation and sometimes strong disagreement about what constitutes appropriate remuneration. Should distinctions be made based on how much expertise or experience is required? Will such work become a career for some people? If so, is that a good or a bad thing? Issues related to remuneration are best dealt with early in the process and candidly. They should also be revisited over time. Any project budget should detail remuneration arrangements and indicate clearly which expenses will be covered.

Training

The partnerships (among patients, families, researchers, clinicians, and policy-makers) required to make patient-oriented research succeed require much more than good intentions and well-developed social skills. All the participants need some training, some of it undergone together, other parts of it best undergone by patients alone, families alone, researchers alone, etc. CIHR is now developing a foundational curriculum in patient-oriented research and INVOLVE has many training resources on its website. There are two points to emphasize: 1) training should be viewed as an ongoing activity, not just as something that happens at the start of a person’s or a team’s work, and2) while everyone needs some training, everyone can, with experience, deliver some part of the training, often to individuals playing quite different roles in the research project.

Last Thoughts

Many, probably most, family members who have found themselves in these new roles in health research report experiencing various frustrations and difficulties. In an often highly credentialed world it isn’t easy to feel confident and find one’s voice, and being asked “how do you know that?” when the answer is intimately linked to a painful experience can cause more than discomfort. Still, families can offer—and have offered—what no one else can; they bring a commitment that can fortify others and the whole enterprise; and they, knowing how the elements of their children’s care and of their children’s lives are connected or disconnected, can illuminate both the dark corners and the big picture.

 

What to expect in Quebec City

Although it's still summer we are very focused on the fall ... more specifically, on our upcoming CFAN Day in Quebec City! 

We invite patient advisors, family advisors, clinicians, health care leaders, researchers and anyone interested in family centred care to participate in our activities over the weekend.

Our official CFAN Day is Sunday, October 18, but the fun will actually begin the day before, with an informal best practices session. At 3:30pm on Saturday, October 17, advisors from across the country will gather and share information about what's happening at their centres. Then we will head out for a networking dinner. If this sounds good to you, please email frankgavin@rogers.com and ask to be added to our list.

Sunday morning our focus will be on peer support activities, and we are lucky enough to have presenters from across the country sharing their tips and successes, along with a team from Holland Bloorview who will be offering up a national scan of projects and practices.  After lunch we will shift gears and address ever-evolving questions related to families and research. This session, which will focus on how families can participate meaningfully in projects ranging from short-term local ones to longer national ones, will be highly interactive and of interest and value to family advisors, clinicians, and administrators.  

Family advisors receive a complimentary registration for Sunday; please email kate.robson@sunnybrook.ca for the registration code.  If you're interested in registering for the whole CAPHC conference (and you should be because it's amazing), you can find out more on the CAPHC website. Family advisors qualify for a 50% reduction in conference rates. The early bird deadline is August 22 and hotel rooms fill up fast, so don't delay! 

CFAN 2015 in Quebec City!

We are so excited about this year's Canadian Family Advisory Network (CFAN) Symposium on Sunday, October 18, in Quebec City.

We will provide participants with an engaging and thought-provoking journey through two highly relevant topics in today's family-centred care climate.  In the morning, we will explore some of the finest peer support programs and talk candidly about the opportunities and challenges of establishing these important networks.  You will hear from peer mentors and administrators about different models, and leave with tangible tips to enhance or start your own program. 

In the afternoon, we will switch gears and discuss the ever-important topic of engaging children, youth and families in research. From topic development to active involvement, participants will learn from champions of research, and from each other, about how to engage this very important stakeholder group.  This day will be one of sharing, open discourse and networking between patient advisors, clinicians, administrators, researchers and others.  We hope to see you in Quebec City!

You can register on CAPHC's website; if you are a family advisor or family representative, there is no cost to you for the one day CFAN Symposium. Simply email kate.robson@sunnybrook.ca and request a CFAN code. 

Please and thank you from the CFAN Steering Committee

We would like to start by offering our thanks. We had an absolutely wonderful time in Calgary, due in large part to our incredibly welcoming hosts from Alberta Children's.  Sherri and Laurel, thank you for making everyone feel so welcome and also for ensuring our day went smoothly. 

We also need to thank all of our speakers who taught us so much over the course of the day. We heard from patients, parents, clinicians and clowns.  We were reminded, as we are every time we gather, that there are so many people across this country doing amazing work, and the support we give each other is invaluable.

And that brings us to the second part of this post ... the "please" part. We want to know who you are and what you do! So if you are a part of a Family Advisory Committee or a similar type of group, affiliated with an institution like a hospital, rehab centre, patient organization or other facility, please visit the CFAN members area of Knowledge Exchange Network and fill in the contact information form. It will help us not just get to know you and your organization, but link you with exciting work going on across the country.

And finally, for those of you who are doing clinical work and are interested in collaborating with patients and families ... thank you! We so appreciate your interest and support. 

CFAN receives many requests each year to support various proposal and projects, and to participate in some of these projects as well. We can help recruit subjects, review proposals, give feedback, and more. In order to ensure that everything we do falls within our mandate, we are asking anyone interested in CFAN support to answer a few questions when you approach us for assistance. These questions are:

1. Why are you asking for CFAN's support and/or participation?

2. What are you asking CFAN to do and by what date? (Please note that requests requiring a response in less than two weeks usually cannot be met.)

3  Would you like CFAN to participate in this project beyond offering a letter of support? If so, please describe what you expect or what you would like that participation to entail.

4. How will you keep CFAN informed of the progress of your proposal or project?

We think having answers to these questions will help us accomplish some important goals, such as finding the best representatives for a project, facilitating diverse types of familial/caregiver participation, and keeping better track of all the wonderful family-centred work you all are doing.

Thanks, everyone! We are so grateful to be part of such an amazing and generous community.

An invitation to our annual CFAN Symposium

You will all be most welcome at the 2014 Annual CFAN Symposium on Sunday, October 19th at the Hyatt Hotel in Calgary! A great program awaits and, through the generosity of CAPHC, it is free of charge.

Agenda for the Day

7:45-9:00:  Breakfast, Networking and Informal Information Sharing

9:00-9:15:   Welcome from CFAN Co-Chairs and Local Hosts

9:15-10:15:  Laugh Until It Helps - Building Resilience through Humour and Laughter (Cheryl Ann Oberg, Therapeutic Clown, Alberta Children’s Hospital)

10:15-10:30:  Nutrition Break / Informal Networking

10:30-11:30: Parents in Staff Roles: What We’ve Learned So Far (Sherri Wuetherick, Alberta Children’s Hospital, Kate Robson, Sunnybrook Hospital, Marni Panas, Stollery Children’s Hospital)

11:30-12:30:   PFCC Rounds at Alberta Children’s Hospital: Using Digital Stories and Conversations to Move from Principles to Practices (Parent and Staff Member)

12:30-1:30:  Lunch and Informal Networking

1:30-4:00:  Parenting Matters: From Research to Action. We will be joining delegates from The Canadian Network for Child and Youth Rehabilitation—CFAN’s first “partnering occasion”— In a highly participatory workshop in which we will all learn about the findings, some perhaps surprising, of a major Canadian research project about parenting children with  impairments and what makes a difference to the parents and to their (our) children. The session will assume that all participants are potential “knowledge brokers” and “change agents” with myths and misunderstandings to identify, strategies to suggest, and actions to take.  Dr. Peter Rosenbaum of CanChild and McMaster will help lead the session; parents and staff will be well mixed and, we hope, thoroughly engaged.

4:30-8:00: Buses take delegates to Alberta Children’s Hospital, beautiful and inspiring, for hospital tours followed by a welcome reception. Buses will return delegates to the hotel.

·     There will be a “meet and greet” CFAN wine and cheese reception early Saturday evening at the hotel (details to follow) and an opportunity to join other CFAN delegates at a nearby restaurant following the reception.

·     There will also be opportunities on Sunday to meet Alex Bilodeau, two-time Olympic gold medal winner, who, along with his whole family, has generously supported CAPHC’s work.

·     Volunteer members of councils and other groups connected to CFAN are eligible for a 50% reduction in the registration fee for the CAPHC conference. (For those attending on Sunday only, there is no charge.) Just go to the CAPHC site (www.caphc.org) and follow the links to the conference registration page where you should enter the access code 2014CF and identify yourself as a CFAN participant.

·     Much in the conference program will appeal especially to CFAN delegates: Tuesday morning’s motivational session, “Looking Back to Look Forward” with Dr. Peter Rosenbaum and two sets of parents who’ve been on the journey for a long time, Joanne and Robin Ganton, and Brenda and Mike McInnis; Monday afternoon’s forum on leadership with, among others, Jackie Schleifer-Taylor from Holland-Bloorview and Alex Munter from CHEO; Monday morning’s plenary session, “The Developing Brain: Is Nature to Resilience as Nurture Is to Leadership” by Dr. Jong Rho—and much more.

·     The banquet this year will be on the Monday evening and will be held at the Calgary Zoo, a short walk from the hotel.

·     The conference will conclude late Tuesday afternoon.

For more information, please contact Frank Gavin (frankgavin@rogers.com)

                      

 

There's an app for that: Vaccination & managing needle pain

We’ve noticed some really interesting public health projects related to vaccination and needles lately, so thought we’d bring them together into a single post.  First, some of you may have seen the new ImmunizeCA app which helps you track immunizations, manage your appointments, and keep on top of outbreaks with alerts. It can be downloaded from iTunes, GooglePlay or BlackBerry World, and it’s (best of all) free! Learn more at www.immunize.ca/app.

If what you’re after is help with the actual receiving of the needle, then the Centre for Pediatric Pain Research, at IWK in Halifax, has a video that will interest you.  “It doesn’t have to hurt” is a light-hearted yet very practical look at strategies that help kids with needles.  After the video, there’s a survey you can fill out to send them feedback.

And if you want more information on helping your kids with needles, Toronto Public Health has a fact sheet, video and some other useful resources on their website.

If ever you see something interesting online that you think CFAN should know about, don’t hesitate to get in touch! We’re on Facebook and Twitter, or you can always send us an email

New Working Groups; Event Alerts

We are excited to announce that we have launched three new working groups to help us accomplish our goal of supporting family centred care in Canada.  We have an Education & Research group, a Social Media & Communications group, and a Conference & Events group. If you are interested in participating in any of these groups, or have project ideas to suggest, please contact Laura Williams or Kate Robson

We also want to bring some interesting webinars and events to your attention. In Toronto, on February 7, Dr Tiffany Chow will be speaking about "Bringing Compassion into Lives with Neurological Disorders"; register through EventBrite for a free ticket. 

 Also in Toronto, the Centre for Innovation in Complex Care is holding a Design Event on Patient-Oriented Discharge Summaries on February 13. Visit their site for more details. 

The CYCC Network will be hosting a series of events across Canada to help improve mental health and well-being of children and youth in challenging contexts. Find out more about dates and locations on their website.

And last but certainly not least, CAPHC has posted one of their excellent webinars on YouTube. It's a topic dear to our hearts ... How Families of Children With Complex Needs  Participate in Everyday Life." Check it out

Events, Calls for Abstracts, and Webinars

We want to share with you some interesting news we've heard recently about events and upcoming conferences. First, (and sorry for the late notice on this one), if you're near Toronto and you are free on Wednesday, November 6, there's an amazing speaker coming to Holland Bloorview. New York fashion photographer Rick Guidotti will be speaking about redefining beauty with images of children who look different. 

Next, there is a wonderful conference that will be held in Vancouver,  May 2-3, 2014. It's being organized by The Institute of Families for Child and Youth Mental Health and The Canadian Consortium for Maternal, Infant, Child, and Youth Mental Health. It's called "Today’s Children and Youth, Tomorrow’s Families 2014 Youth and Family Consensus Conference", and the organizers are actively welcoming youth and family submissions and participation. 

And last, but not least, there's a great CAPHC webinar coming up featuring the IWK Family Leadership Council. Visit the Knowledge Exchange Network for more information.  

Please share these events with your colleagues and collaborators, and if you ever hear of an event that you think we should know about, please let us know!

 

Update from our Steering Committee

We are still riding that great wave of energy from our CFAN day in October! What an amazing day, full of great people and great moments. We want to thank all of our wonderful presenters, organizers and attendees, and we also want to offer sincere thanks to CAPHC for their ongoing support. 

If you attended our CFAN day, we'd love to hear from you. Please take a few minutes and fill out our survey: 

http://www.surveymonkey.com/s/2NDWG9T

We will post an update soon with the results of the commitment session and with a summary of all of your great ideas. Our target is the beginning of December and we are on track to deliver. 

Thanks again to all of you for your interest and your dedication. Together we're making a wonderful difference for families and health care in Canada. 

Preparing for this weekend ...

In a few days, we will all be gathering at the Metro Toronto Convention Centre for our annual CFAN workshop! Thank you so much for registering; we are very excited about this year's agenda

We also want to take this opportunity to invite you to a networking meeting and dinner the night before the CFAN workshop. On Saturday, October 19, we will be meeting at the Hotel InterContinental Toronto Centre (225 Front Street West) at 5:30pm. We have also reserved tables at Canyon Creek Front Street (156 Front St West) at 7:30pm. If you would like to come to either (or hopefully both!) of these, please email kate.robson@sunnybrook.ca to be added to the list. We have limited space so please respond as soon as possible.

If you are driving to the workshop on Sunday, there is parking at the MTCC which costs $22.00 for the day. There is also a Green P parking lot nearby at 40 York Street; it costs $7.00 to park for 12 hours. Please be advised that, due to a marathon happening downtown that day, there will be some road closures. The marathon website suggests some good alternate routes

If you are taking transit, please be advised that the subway doesn't open until 9am. Bus and streetcar routes will be running. You can use the trip planner at ttc.ca to plan your route

If you are staying at the Hotel InterContinental Toronto Centre, the hotel has useful information about airport transfers and driving directions on its website. It's especially useful to know that, if you're coming via the island airport, there is a complimentary shuttle that stops just a block away. 

And finally, if you haven't yet registered for our post-workshop social event, please do! We are so grateful to Holland Bloorview and Sick Kids for sponsoring this event, which will be steps away from the conference centre at The Ballroom, 145 John Street.

Please do not hesitate to contact us with any questions. We are so looking forward to seeing you all this weekend!

 

Meeting, Dinner & Networking Opportunity October 19

Are you coming to town on Saturday Oct 19, just so you don't miss a moment of our October 20 conference? Or do you live in the GTA? If the answer to either is yes, please join us for an informal CFAN summit at the InterContinental beginning at 5pm. Hear about what CFAN's done this past year, and connect with other family advisors. After the meeting we will be gathering for dinner at 7:30pm at Canyon Creek Front Street (156 Front St W). NOTE: This is a venue change from our original venue. If you're interested in either the meeting or dinner (or ideally both!) please email kate.robson@sunnybrook.ca to be added to the reservation. We have limited capacity so first come, first serve. It's a wonderful way to connect! 

 

Webinar alert!

We are so excited about this upcoming webinar! On October 2, CAPHC will be hosting "Parental Presence during Induction of Anesthesia: Finding Common Ground". The recommendations that will be presented during the webinar were created by a working group of the Child and Youth Health Coalition. CFAN member Frank Gavin was part of the team, which also included other family representatives. We are very happy to see this report, and even happier that it's the result of a true collaboration between family members and clinical staff! You can register now at CAPHC's Knowledge Exchange Network.

Agenda for 2013 CFAN Workshop

We are so excited to welcome you to our annual workshop, which will be held this year in Toronto on October 20th. If you're interested in registering, you can do so online on the CAPHC website.   If you're a patient or family advisor, please email Kate Robson for a registration code that allows you to register for the one-day workshop for free. 

CFAN Symposium:  Sunday October 20, 2013

“Invitation, Inspiration, and Innovation:  Patient and family-centred care in Canada”

LOCATION: Room 104C, North Building, Metro Toronto Convention Centre. 255 Front Street West. 

7:30am Breakfast

8:00am  Welcome & Introductions: CFAN chairs

8:30am Plenary Session

Senior hospital leaders discuss  "Family-Centred Care: Organizational Readiness, Challenges & Opportunities"

  • Pam Hubley, Chief, Professional Practice & Nursing, SickKids Hospital
  • Jackie Schleifer Taylor, Vice-President, Programs and Services, Holland Bloorview Kids Rehabilitation Hospital

These two dynamic leaders will openly share their thoughts on how to embed family-centred care, not only as a cultural philosophy but as a key practice in organizational decision-making and care planning with patients and families.

9:30am  Member spotlight: Best practices -- “Inviting” patient and family engagement

  • CFAN Steering Committee Members

Such great family-centred work is going on across this country! We will highlight examples of innovative family-centred projects in this spotlight.  The "Partners in Pajamas" program at BC Children’s Hospital, led by Susan Greig, allows patient and family advisors to provide their feedback and input from the comfort of their own home.  We will also hear from Yarrow Gillis, Chair of the Braveheart Support Society and Family Advisor at IWK Health Centre. 

10:00am Refreshment Break

10:30am Innovating Together  (Workshop)

In this facilitated discussion, we ask, "How can CFAN help patients, families & staff with the advancement of family-centred care in Canada"

  • Doug Miron, Senior Consultant, Organizational Development and Learning, Holland Bloorview Kids Rehabilitation Hospital  (facilitator)

Together we will create a vision for CFAN that embraces our next steps as a national collective.  Meet other families, staff and leaders who have innovative ideas in shaping family-centred care in their organizations and discuss how to move this work forward on a national level.

12:30pm Lunch

1:15pm Expert Panel Presentation
           Advocate with insight: storytelling as a tool for partnership and change

  • Dan Yashinsky, Canadian Storyteller, Author and Community Organizer
  • Sue Robins, Consultant, Family-Centred Care, Bird Communications
  • Louise Kinross, Editor, Bloom magazine, Holland Bloorview
  • Frank Gavin, CFAN National Liaison (Session Facilitator)

Frank Gavin will facilitate this exciting session where three panelists share how stories can be used to support culture change in any organization.  Key topics will be: family as faculty, storytelling to support change and narrative medicine techniques.  

2:30pm Break

2:45pm Member spotlight: Inspirational stories of family-centred care

  • Alexandra Varela, Family Advisor, Vice Chair, Family Centered Care Advisory Council, SickKids Hospital.

We are privileged to hear directly from Alexandra Varela, a family advisor from SickKids Hospital in Toronto.  Alexandra will describe her transition from youth advisor to adult advisor and talk about best ways to invite young patients into discussions around policy, programming and their own health care needs.


3:15pm Closing Session

Pain into purpose: parent engagement as an instrument of change

  • Lindsey Yeskoo, Emily’s House

Lindsey Yeskoo will share her inspiring story of life with her daughter Emily and the building of Emily’s House, an innovative new palliative care respite home in Toronto.

4:15pm Final thoughts for the day / closing remarks

4:30pm Symposium adjourns – rest up for evening activities!

Special Event!

7-10pm The SickKids and Holland Bloorview Family Advisory Committees would like you to join them at The Ballroom upscale bowling alley in downtown Toronto just minutes from the conference!  Members of these two committees are co-hosting a casual evening of eating, mingling, bowling and sharing new ideas.   There is no fee but we only have space for 95 so please register early at www.cfansocial.eventbrite.ca