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The impact of cancer patient involvement in
advocacy and public policy development
Jackie Manthorne
President & CEO, CCSN
About CCSN
• National organization representing patients,
survivors and loved ones affected by any cancer.
• 30 partner groups representing a number of
cancers and cancer issues.
• Our mission is to:
– Empower collaborative action.
– Provide education and action opportunities.
– Educate the public and policy makers about the
financial, emotional and health costs of cancer.
– Research ways to alleviate barriers to optimal patient
care and follow-up.
Activities
• CCSN:
– Asks questions of parties in federal, provincial & territorial
elections.
– Makes submissions to the pan-Canadian Drug Oncology Review
(pCODR) and Common Drug Review (CDR/CADTH).
– Is holding a series of eight webinars on advocacy issues in 2013
– Held a Legislative Breakfast at Queens Park to raise awareness
of metastatic prostate cancer.
– Is organizing a Bad to the Bone public awareness campaign to
raise awareness of bone metastases in prostate and breast
cancer patients.
– Has made presentations at the World Cancer Congress and
PCCN Ottawa, among others.
More Activities
– Has organized a public awareness campaign about chemo-
induced nausea and vomiting, including 3 videos on YouTube.
– Has held a media campaign on the impact of prostate cancer
treatment on sexuality.
– In process: creation of asbestos, lung cancer & mesothelioma
primer on CCSN’s website.
– In process: creation of improved section on prostate cancer on
CCSN’s website.
• CCSN also has three advisory councils composed of
patients, survivors, caregivers and family members:
– CCSN Prostate Cancer Advisory Council
– CCSN Breast Cancer Advisory Council
– CCSN Asbestos and Mesothelioma Advisory Council
Involvement of patients &
survivors in volunteer advocacy
• Guiding question
– What impact does being involved in volunteer advocacy
and/or the development of public policy have on how
patients feel about their illness?
• References
– “Empowerment and persons with cancer: politics in cancer
medicine.” Grey, RE, Doan BC, Church K. J. Palliat Care,
1990 Summer; 6(2):33-45.
• Survey on SurveyMonkey in April 2013.
• Open to cancer patients, survivors, caregivers, family members.
– First section: Questions about volunteer advocacy activities.
– Second section: Provided an opportunity to share what their involvement
in volunteer advocacy meant to them.
Survey results
• 51 cancer patients, survivors, caregivers and family
members completed the survey.
– 86% were cancer patients or survivors.
– 10% were caregivers.
– 10% were family members.
• When asked what kind of cancer group they were a
member of, respondents said:
– Local support group: 69%
– Local group that raises funds for is activities: 24%
– Regional organization: 20%
– National organization: 51%
– None at this time: 10%
Survey results
• When asked how many cancer organizations they
were currently involved in, respondents said:
– 1 group: 15 people
– 2 groups: 8 people
– 3 groups: 4 people
• When asked how many hours they volunteered
during a typical month:
– Responses ranged from 1 hour to 100-200 hours.
– The mean or average was 24 hours a month.
– The median was 8 hours a month.
Survey results
• When asked what kind of advocacy campaigns they
had been involved in, respondents said:
– To raise public awareness: 95%
– To educate key decision makers, like politicians or those
working in our healthcare or cancer care system: 58%
– To change public policy: 28%
• When asked where these campaigns took place,
respondents said:
– Local: 83%
– Regional: 45%
– National: 35%
Survey results
• Volunteer advocacy activities:
– 76 % of respondents have written a letter to a politician or someone in
his or her office about an important issue.
– 46% have written a letter to someone in authority at a hospital, cancer
centre or other healthcare or cancer care facility about an important
issue.
– 61% have called a politician or someone in his or her office to discuss
an important issue.
– 39% have called someone in authority at a hospital, cancer centre or
other healthcare or cancer care facility about an important issue.
– 54% have met with a politician or someone in his or her office to
discuss an important issue.
– 46% have met with someone in authority at a hospital, cancer centre
or other healthcare or cancer care facility about an important issue.
Survey results
• Comments included:
– “Politicians and directors need to know if there are
failings in their organizations. Direct contact is the
only way to ensure your message is heard.”
– “You get to talk to the politician that represents you
and let them know what problems you are facing as a
cancer patient.”
– “Change only happened after many letters or calls.”
– “The need for policy change must be heard and
demonstrated.”
Survey results
• Volunteer media activities:
– 60% of respondents contacted a reporter or
someone else working in the media about an
important issue.
– 98% have done an interview with the media about
an important issue.
– 65% have acted as a spokesperson for an
organization about an important issue.
– 19% have organized a media campaign.
Survey results
• Comments included:
– “We still have problems getting the media attention
that we wish.”
– “You can let other people in your situation know that
they aren’t alone.”
– “The public needs to understand why they also need
to care about this and to be engaged.”
– “Raised awareness but did not initiate change.”
– “I felt that expressing my view and finding other
patients to do that brought the issue to public
attention, and in some cases changed things.”
Survey results
• Of those who wrote, called or met with politicians or
healthcare/cancer care decision makers,
– 64% felt that they made a difference.
– 9% felt that they did not make a difference.
– 27% weren’t sure.
• Of those who contacted media, were interviewed,
acted as spokesperson, or organized a media campaign,
– 60% felt that they made a difference.
– 5% felt that they did not make a difference.
– 35% weren’t sure.
Survey results
• Respondents were also asked whether they
felt their volunteer advocacy activities made a
difference in better treatment for others.
– 65% felt that they made a difference.
– 7% felt that they did not make a difference.
– 28% weren’t sure.
Survey results
• When asked which cancer issues were most important to
them, respondents replied:
– Issues related to their particular cancer and health in general.
– Patient advocacy and support.
– Screening.
– Access to Improvements in treatment and timely treatment.
– Better information to decide between treatment options.
– Public Education and public awareness of cancer issues.
– Lack of psychosocial support during and after treatment.
– Provincial coverage for drugs and lack of equitable access.
– Faster diagnosis.
– Help for patients in financial and/or emotional distress.
– Stigma of lung cancer patient.
– End of life care.
Survey results
• The final question was whether having been
involved in volunteer advocacy made
respondents feel different about their illness:
– Yes: 61%
– No: 18%
– Not sure: 21%
Survey results
• Comments included:
– “My illness has led me to become involved in something
important.”
– “I am comfortable as an advocate; learning more has reduced
my anxiety on certain issues.”
– “Nothing can change the fact that I have cancer, but it makes me
feel better that I have done a few little things to maybe help
people who are getting diagnosed now to have an easier time.”
– “I think it is important to be active about promoting changes in
the cancer system that don’t work rather than being inactive or
reactive.”
– Helping others makes me feel better, especially when trying to
make changes that will improve things for every one.”
Summary
– Patient advocacy generally has a positive impact
on the self-image of those doing it.
– Many volunteer advocates feel better.
– They feel prouder, more hopeful, more useful,
helpful, effective, and powerful.
– Still others feel less angry, less anxious, and less
sad.
– But some survey respondents did feel sadder,
angrier, less hopeful, and less content.
Recommendations
– Organizations should ensure that
patients, survivors, caregivers and family members
working in advocacy are provided with the skills they
need to undertake advocacy, including information on
Canada’s healthcare and cancer care systems as well
as how our government functions and media training.
– They should also be provided support to deal with
often slow-moving and sometimes frustrating
healthcare, cancer care and government systems.
– As one survey respondent put it, “Awareness was
raised, but the gears of change are lubricated with
molasses and heat is needed to get things moving.”
How to reach us
Canadian Cancer Survivor Network
1750 Courtwood Crescent, Suite 111
Ottawa, ON K2C 2B5
Telephone: 613-898-1871
E-mail: jmanthorne@survivornet.ca or
mforrest@survivornet.ca
Web site: www.survivornet.ca
Blog: http://jackiemanthornescancerblog.blogspot.com/
Twitter: @survivornet.ca
Facebook: www.facebook.com/CanadianSurvivorNet

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The involvement of patients and survivors in volunteer advocacy survey

  • 1. The impact of cancer patient involvement in advocacy and public policy development Jackie Manthorne President & CEO, CCSN
  • 2. About CCSN • National organization representing patients, survivors and loved ones affected by any cancer. • 30 partner groups representing a number of cancers and cancer issues. • Our mission is to: – Empower collaborative action. – Provide education and action opportunities. – Educate the public and policy makers about the financial, emotional and health costs of cancer. – Research ways to alleviate barriers to optimal patient care and follow-up.
  • 3. Activities • CCSN: – Asks questions of parties in federal, provincial & territorial elections. – Makes submissions to the pan-Canadian Drug Oncology Review (pCODR) and Common Drug Review (CDR/CADTH). – Is holding a series of eight webinars on advocacy issues in 2013 – Held a Legislative Breakfast at Queens Park to raise awareness of metastatic prostate cancer. – Is organizing a Bad to the Bone public awareness campaign to raise awareness of bone metastases in prostate and breast cancer patients. – Has made presentations at the World Cancer Congress and PCCN Ottawa, among others.
  • 4. More Activities – Has organized a public awareness campaign about chemo- induced nausea and vomiting, including 3 videos on YouTube. – Has held a media campaign on the impact of prostate cancer treatment on sexuality. – In process: creation of asbestos, lung cancer & mesothelioma primer on CCSN’s website. – In process: creation of improved section on prostate cancer on CCSN’s website. • CCSN also has three advisory councils composed of patients, survivors, caregivers and family members: – CCSN Prostate Cancer Advisory Council – CCSN Breast Cancer Advisory Council – CCSN Asbestos and Mesothelioma Advisory Council
  • 5. Involvement of patients & survivors in volunteer advocacy • Guiding question – What impact does being involved in volunteer advocacy and/or the development of public policy have on how patients feel about their illness? • References – “Empowerment and persons with cancer: politics in cancer medicine.” Grey, RE, Doan BC, Church K. J. Palliat Care, 1990 Summer; 6(2):33-45. • Survey on SurveyMonkey in April 2013. • Open to cancer patients, survivors, caregivers, family members. – First section: Questions about volunteer advocacy activities. – Second section: Provided an opportunity to share what their involvement in volunteer advocacy meant to them.
  • 6. Survey results • 51 cancer patients, survivors, caregivers and family members completed the survey. – 86% were cancer patients or survivors. – 10% were caregivers. – 10% were family members. • When asked what kind of cancer group they were a member of, respondents said: – Local support group: 69% – Local group that raises funds for is activities: 24% – Regional organization: 20% – National organization: 51% – None at this time: 10%
  • 7. Survey results • When asked how many cancer organizations they were currently involved in, respondents said: – 1 group: 15 people – 2 groups: 8 people – 3 groups: 4 people • When asked how many hours they volunteered during a typical month: – Responses ranged from 1 hour to 100-200 hours. – The mean or average was 24 hours a month. – The median was 8 hours a month.
  • 8. Survey results • When asked what kind of advocacy campaigns they had been involved in, respondents said: – To raise public awareness: 95% – To educate key decision makers, like politicians or those working in our healthcare or cancer care system: 58% – To change public policy: 28% • When asked where these campaigns took place, respondents said: – Local: 83% – Regional: 45% – National: 35%
  • 9. Survey results • Volunteer advocacy activities: – 76 % of respondents have written a letter to a politician or someone in his or her office about an important issue. – 46% have written a letter to someone in authority at a hospital, cancer centre or other healthcare or cancer care facility about an important issue. – 61% have called a politician or someone in his or her office to discuss an important issue. – 39% have called someone in authority at a hospital, cancer centre or other healthcare or cancer care facility about an important issue. – 54% have met with a politician or someone in his or her office to discuss an important issue. – 46% have met with someone in authority at a hospital, cancer centre or other healthcare or cancer care facility about an important issue.
  • 10. Survey results • Comments included: – “Politicians and directors need to know if there are failings in their organizations. Direct contact is the only way to ensure your message is heard.” – “You get to talk to the politician that represents you and let them know what problems you are facing as a cancer patient.” – “Change only happened after many letters or calls.” – “The need for policy change must be heard and demonstrated.”
  • 11. Survey results • Volunteer media activities: – 60% of respondents contacted a reporter or someone else working in the media about an important issue. – 98% have done an interview with the media about an important issue. – 65% have acted as a spokesperson for an organization about an important issue. – 19% have organized a media campaign.
  • 12. Survey results • Comments included: – “We still have problems getting the media attention that we wish.” – “You can let other people in your situation know that they aren’t alone.” – “The public needs to understand why they also need to care about this and to be engaged.” – “Raised awareness but did not initiate change.” – “I felt that expressing my view and finding other patients to do that brought the issue to public attention, and in some cases changed things.”
  • 13. Survey results • Of those who wrote, called or met with politicians or healthcare/cancer care decision makers, – 64% felt that they made a difference. – 9% felt that they did not make a difference. – 27% weren’t sure. • Of those who contacted media, were interviewed, acted as spokesperson, or organized a media campaign, – 60% felt that they made a difference. – 5% felt that they did not make a difference. – 35% weren’t sure.
  • 14. Survey results • Respondents were also asked whether they felt their volunteer advocacy activities made a difference in better treatment for others. – 65% felt that they made a difference. – 7% felt that they did not make a difference. – 28% weren’t sure.
  • 15. Survey results • When asked which cancer issues were most important to them, respondents replied: – Issues related to their particular cancer and health in general. – Patient advocacy and support. – Screening. – Access to Improvements in treatment and timely treatment. – Better information to decide between treatment options. – Public Education and public awareness of cancer issues. – Lack of psychosocial support during and after treatment. – Provincial coverage for drugs and lack of equitable access. – Faster diagnosis. – Help for patients in financial and/or emotional distress. – Stigma of lung cancer patient. – End of life care.
  • 16.
  • 17. Survey results • The final question was whether having been involved in volunteer advocacy made respondents feel different about their illness: – Yes: 61% – No: 18% – Not sure: 21%
  • 18. Survey results • Comments included: – “My illness has led me to become involved in something important.” – “I am comfortable as an advocate; learning more has reduced my anxiety on certain issues.” – “Nothing can change the fact that I have cancer, but it makes me feel better that I have done a few little things to maybe help people who are getting diagnosed now to have an easier time.” – “I think it is important to be active about promoting changes in the cancer system that don’t work rather than being inactive or reactive.” – Helping others makes me feel better, especially when trying to make changes that will improve things for every one.”
  • 19. Summary – Patient advocacy generally has a positive impact on the self-image of those doing it. – Many volunteer advocates feel better. – They feel prouder, more hopeful, more useful, helpful, effective, and powerful. – Still others feel less angry, less anxious, and less sad. – But some survey respondents did feel sadder, angrier, less hopeful, and less content.
  • 20. Recommendations – Organizations should ensure that patients, survivors, caregivers and family members working in advocacy are provided with the skills they need to undertake advocacy, including information on Canada’s healthcare and cancer care systems as well as how our government functions and media training. – They should also be provided support to deal with often slow-moving and sometimes frustrating healthcare, cancer care and government systems. – As one survey respondent put it, “Awareness was raised, but the gears of change are lubricated with molasses and heat is needed to get things moving.”
  • 21. How to reach us Canadian Cancer Survivor Network 1750 Courtwood Crescent, Suite 111 Ottawa, ON K2C 2B5 Telephone: 613-898-1871 E-mail: jmanthorne@survivornet.ca or mforrest@survivornet.ca Web site: www.survivornet.ca Blog: http://jackiemanthornescancerblog.blogspot.com/ Twitter: @survivornet.ca Facebook: www.facebook.com/CanadianSurvivorNet

Editor's Notes

  1. J Palliat Care. 1990 Summer;6(2):33-45.Empowerment and persons with cancer: politics in cancer medicine.Gray RE, Doan BD, Church K.SourceDepartment of Psychology, Sunnybrook Health Science Centre, North York, Ontario, Canada.AbstractPersons with cancer are likely to encounter a loss of personal control as a result of their illness experience. An empowerment perspective, which emphasizes the possibility of patients "owning their own lives", is useful for understanding the interpersonal and social dynamics of patients' loss of control and for guiding the development of strategies aimed at maximizing control. Because the factors influencing an individual's sense of control are multi-leveled, optimal empowerment occurs when strategies are employed at several levels of social organization. In this paper, a number of barriers to the empowerment of cancer patients are identified and strategies recommended to enhance patient empowerment in cancer care. The empowerment needs and strategies discussed here include: (a) the provision of optimal care, (b) the enhancement of individual patient power, (c) the development of a strong consumer voice in policy decision-making processes, and (d) societal attitude change.