The involvement of patients and survivors in volunteer advocacy survey

The impact of cancer patient involvement in advocacy and public policy development

Jackie ManthornePresident & 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 Network1750 Courtwood Crescent, Suite 111Ottawa, ON K2C 2B5Telephone: 613-898-1871E-mail: [email protected] or [email protected] Web site: www.survivornet.caBlog: http://jackiemanthornescancerblog.blogspot.com/Twitter: @survivornet.caFacebook: www.facebook.com/CanadianSurvivorNet