Friday, 10 October 2014

Canadian Cancer Survivor Network online resource recognizes unique experiences of metastatic breast cancer patients

Ottawa, ON – October 10, 2014 – In recognition of Metastatic Breast Cancer Awareness Day on October 13, 2014, the Canadian Cancer Survivor Network (CCSN) is proud to announce the launch of an online portal recognizing and addressing the experience of metastatic breast cancer at
Approximately 30 percent of women and men diagnosed with breast cancer will at some point be diagnosed with metastatic breast cancer, and while metastatic breast cancer can be treated, it currently cannot be cured. 
This does not mean that those living with metastatic breast cancer cannot enjoy good quality of life! However, the needs and issues facing metastatic breast cancer patients are vastly different.
  • Breast cancer support groups are mostly composed of newly or recently diagnosed patients and those who have metastatic breast cancer often do not have much in common with them. Unfortunately, metastatic breast cancer support groups are few and far between.
  • Women and men living with metastatic breast cancer are in and out of treatment, hoping that their cancer will stop its progression so they have a decent quality of life. They need ongoing help both accessing and navigating the healthcare and cancer care system.
  • Metastatic breast cancer patients and their families need ease of connection to accurate, updated clinical information, improved access to clinical trials, and readily available psychosocial support.
During this month of October, when there is so much awareness raising of and fund raising for breast cancer research, we must not forget the 30 percent whose breast cancer has metastasized.
"It is critically important to address the information needs and concerns of those living with metastatic breast cancer,” says Jackie Manthorne, President and CEO of the Canadian Cancer Survivor Network. "Aside from purely medical considerations, the metastatic journey includes many practical decisions and adjustments. Each of these changes has the potential to impact those closest to the patient. As well, metastatic breast cancer patients often feel isolated and ignored, especially during October when they often feel that they do not have a voice in most breast cancer awareness and fundraising campaigns. We hope that our website section on metastatic breast cancer provides them a place to learn, to find resources and to share their experiences.”  
About the Portal
The Metastatic Breast Cancer Portal provides a trusted and accurate source of metastatic breast cancer information, from the history of Metastatic Breast Cancer Awareness Day to Telling our Stories: living with metastatic breast cancer.
“For those of us living with metastatic breast cancer, the words ‘you’ve got cancer’ were followed by ’we’re sorry but you cannot be cured.’ When my oncologist told me this over two years ago, I had no idea I would still be here today, says Sheila Ghosh. “At my first diagnosis, my cancer had already permeated my liver so badly that my liver was failing. I had no idea that I was sick. I felt betrayed by my own body.” But after treatment, Sheila confirms that she is doing well. “I have been back at work since May 2013. I never thought I would get a job, but I did. Now I’m happy and living a full life without pain. I can even run again and I love to walk outside in the woods with my dog. I just hope that more patients can live with metastatic breast cancer the way I have these past two years. The right treatment has allowed me to enjoy every day of my life and I am now part of a wonderful community of survivors.”
CCSN’s Metastatic Breast Cancer Portal also includes sections on:
  • What makes metastatic breast cancer different?
  • Statistics and research in metastatic breast cancer
  • Metastatic breast cancer blogs
  • Bone health in metastatic breast cancer patients
  • Think before you pink campaign
  • Resources for metastatic breast cancer patients
The portal was funded through an unrestricted educational grant from Pfizer.
About Canadian Cancer Survivor Network (CCSN)
CCSN is an organization committed to developing public policy on cancer issues and increasing advocacy for optimal cancer care and follow-up. CCSN works to connect patients, survivors and other stakeholder groups with decision makers and the wider community to engage in discussion and to act on evidence-based best practices to alleviate the medical, emotional, financial and social costs of cancer and encourage research on ways to overcome barriers to optimal cancer care and follow-up for survivors in Canada.
For more information or to schedule an interview, please contact:
Jackie Manthorne                                                                                           
Canadian Cancer Survivor Network

Wednesday, 8 October 2014

Participate in the consultations of the Canadian Advisory Panel on Healthcare Innovation

On June 24, 2014, Health Minister Rona Ambrose announced the creation of the Advisory Panel on Healthcare Innovation to look at creative healthcare ideas and approaches that exist in Canada and abroad, identify those that hold the greatest promise for Canada, and offer its recommendations on how the federal government can support them.

Over the next year, the Panel will seek to identify five promising areas of healthcare innovation in Canada and internationally that have the potential to reduce growth in health spending while leading to better care. The Panel will also be recommending ways in which the federal government can support those innovations.

Stakeholder consultations

As part of its work, the Panel would like to hear from stakeholders. This will be done through written submissions as well as face-to-face meetings and consultations across Canada, beginning this fall. The Panel is soliciting input on your experiences in dealing with innovation within the healthcare system and what more can be done to support it in Canada.

Stakeholder consultations are targeted at organizations and individuals involved in healthcare system innovation, such as researchers, policy makers, entrepreneurs, charities, professional associations or healthcare providers.

What is healthcare innovation?

Healthcare innovation involves a range of activities around the development, uptake and adoption of new approaches that generate value in terms of quality and safety of care, administrative efficiency, the patient experience, and patient outcomes. Innovation can occur within a single healthcare facility or department (micro-level), across a regional health system (meso-level) or at the level of a provincial, territorial or national healthcare system (macro-level).

The Panel are interested in innovation that is cost-effective (i.e. yields a meaningful improvement in health outcomes for a modest increase in expenditures), or, better yet, that is cost-neutral with improved outcomes, or results in cost savings for the health system with the same or better outcomes.
Innovation depends on the support and interaction of three critical components:

·         Practice, which encompasses people and the way they work. This is not only clinical practice, but also includes processes and interactions between clinicians and patients, clinicians and administrators, administrators and policymakers, etc.
·         Structure, which includes physical, organizational, economic, legal or other mechanisms that constrain or enable the actions of individuals in the system.
·         Culture: the shared values, perceptions and opinions of individuals, and groups of individuals, with the system.

What is the panel interested in hearing about?

Successful innovation requires partnerships that cut across multiple sectors – including governments, healthcare providers and organizations, industry and research. For success, especially at the macro-level, change is needed in practice, structure and/or culture.

The Panel would like to hear about innovation that is improving the healthcare system, and what more needs to be done. This could relate to the successful introduction of new technologies and tools, new ways of working, new ways of organizing and/or financing healthcare, new ways of capturing and using information, and much more. This is an opportunity for you to share big ideas and perspectives, which would inform The Panel’s work and ultimately the advice it provides.

The Panel is interested in receiving written briefs from stakeholders of no more than five (5) pages. To assist you in drafting your submissions, go to to access a series of questions . Feel free to address some or all of these, but please ensure that your submission does not exceed five pages in length.

Submissions will be accepted by email at

Public consultations

This consultation is designed to offer all Canadians a chance to provide the Panel with information about their experiences with the healthcare system.

Go to where you can provide information about having seen or experienced innovations in healthcare that you think other Canadians should know about. This could include new ways in which doctors, nurses and other healthcare workers are providing healthcare to you. It could also be about ways that you, as a patient, have taken a new role in your own healthcare. Finally, it could be about your ideas as a citizen and/or taxpayer.

This consultation began on Tuesday, September 16th, and will end on Friday, November 14th, at 11:59 p.m. EST.