Advocacy: The Cornerstone of Cancer Survivorship

In cancer survivorship, advocacy is a continuum. It may begin at the personal level, but as the survivorship trajectory changes, self-advocacy efforts may broaden to encompass first group or organization advocacy, and later may move to public advocacy efforts.

Personal Advocacy

At diagnosis and during intensive cancer treatment, self-advocacy is a way of taking charge in an otherwise portentous environment of diagnostic tests, surgery, radiation, chemotherapy, and doctors' offices. From arming oneself with good information about their diagnosis, to seeking second opinions, to locating resources for identifying and obtaining support, to knowing how to ask the right questions — people with cancer can become self-efficacious. Personal empowerment can mean the difference between maintaining a positive future outlook and enhancing quality of life or feeling helpless and less certain of the desirability of survival.

The 1 to 5 years after a cancer diagnosis is a time of reentry and reevaluation of one's life. It is during this time that cancer survivors realize that their lives will never be the same. Family and friends cannot understand why survivors are not happy simply to be alive, and support systems that were in place during the acute stage may diminish or disappear. It is at this point that many survivors seek out other survivors with whom they can identify.

This life transformation, whether at age 24 or 65, calls for another type of self-advocacy. With the underlying idea that they "want to give something back," in gratitude for their survival, many survivors seek out avenues to share their experience with others. This shared knowledge, the idea that information is powerful — the veteran helping the rookie notion — is what the survivorship movement is largely about. When occurring in the context of a self-help group or within a professionally facilitated support group, this structured transmission of wisdom from a more seasoned survivor to the newcomer provides a strong foundation for people who have had cancer to play a more proactive role in making myriad decisions that will follow them the rest of their lives.

Advocacy for Others

Having been successful in exchanging information with others who share a cancer experience, survivors can extend their advocacy efforts to the larger community. Through networking with other persons in their area, survivors can learn more about specific issues (e.g., sexuality, infertility, job discrimination, insurance access, or reimbursement problems). Armed once again with valuable information, cancer survivors can go on to tell others their shared experiences and advocate for changes that can have a broad impact on survivorship.

One of the easiest and most satisfying ways to advocate for others is to speak at the local community level — to church and civic groups, to medical students and physicians, oncology nurses, social workers, and others — to educate them about the complex interpersonal and psychosocial issues that dominate survivors' lives after a diagnosis of cancer. This public speaking becomes a testimony that affirms one's survival, defies the myths and stigmas about cancer that are still much in evidence in our society, and perhaps reaches others who are silently struggling with similar issues.

Public Interest Advocacy

The exponential growth of the survivorship movement increasingly is realized by the many long-term survivors who go on to become professional survivor advocates. These individuals have taken their learned experiences from diagnosis, through treatment and recovery, and become advocates participating in the national cancer survivorship movement. Particularly notable among them are those who have effected change in public policy including appropriations for cancer research; those who have pressed for more survivorship research; those who have given public witness testimony at both the local and federal levels of government; and those who have contributed to the body of knowledge about living a better quality of life after a diagnosis of cancer, either through professional journals, or the popular press. By telling "one's story," including print and broadcast media, the net is cast much wider. Advocacy training for media relations is a burgeoning field of interest among consumer groups today and provides yet another avenue for survivors to "testify" about their experiences.

As people with a history of cancer recount their stories in the community and to the media, they become recognized experts on the compelling issues that have impacted their lives and the lives of the community of survivors with whom they have become involved. Depending on one's vocation, avocation, or other life circumstances, the interest one takes in sharing this experience is limited only by the desire to speak up — whether it is survivor-to-survivor in support groups, in the workplace, before state legislators, or to Congress. Advocacy is an invaluable skill set that can empower persons with cancer and can maximize the quality or their own survival as well as that of others.

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From Cancer Patient to Cancer Survivor: Lost in Transition

In its November 2005 report, “Lost in Transition,” The Institute of Medicine, with input from NCCS and the cancer community, identified four essential components that must be delivered to ensure quality cancer care:

• Prevention of recurrent and new cancers and of other late effects resulting from cancer and its treatment
• Surveillance for cancer spread, recurrence, or second cancers and assessment of medical and psychosocial late effects
• Intervention for consequences of cancer and its treatment, including  medical problems such as lymphedema and sexual dysfunction, symptoms like pain and fatigue, psychological distress experienced by survivors and their caregivers; concerns related to employment, insurance and disability
• Coordination between specialists and primary care providers to ensure that all of the survivors health needs are met

Read the full article online.

Blueprint for Quality Care

In an effort to define quality cancer care, the Cancer Quality Alliance (CQA), a national alliance advocating for improvements in the quality of cancer care co-chaired by leaders from the National Coalition for Cancer Survivorship and the American Society for Clinical Oncology, has developed a set of five cancer case studies that present examples of "best case" and "worst case" scenarios in cancer care. Together, the scenarios represent a "Blueprint" for action needed to achieve the best possible cancer care.

Published in the September/October issue of CA: A Cancer Journal of Clinicians, "Blueprint for Quality Cancer Care," highlights examples of system failures that can occur in real life when treating people with cancer, interventions to overcome these failures, and action steps to achieve "best case" care. The "Blueprint" will be made available for use as a teaching tool for health care providers and patients, laying the groundwork for creating quality cancer care in this country by demonstrating how the health care system should work to benefit any person living with, through, and beyond a cancer diagnosis.

Read the full report online for free.

Caring for the Whole Patient

As many of you know from experience, people with cancer and their family members are at increased risk for anxiety, depression, and elevated stress as a result of managing life with cancer. This newly released report explains why psychosocial health care is important and why the health care system should recognize these needs and connect patients to the right services. The Institute of Medicine provides unbiased, evidence-based, and authoritative information and advice concerning health and science policy to policy-makers, professionals, leaders in every sector of society, and the public at large.

At NCCS, we understand the importance of comprehensive cancer care - which involves treating the entire person and not just the disease.  As the IOM states in its report brief for patients, cancer requires collaboration between the survivor, his/her support network, and the survivor's health care team.  Most importantly, as outlined by the IOM, survivors should expect to have:

• Satisfying communication with doctors, nurses, and others treating his/her cancer;
• Doctors, nurses, and others treating your cancer ask you about your needs for information and emotional and social support; and 
• A health care person or team who works with you to develop and carry out a plan that:
• Links you to the information and support that you need;
• Coordinates your medical, emotional, and social care;
• Helps you to manage your illness, treatments, and health.

Read the entire IOM report free online.

Crossing the Quality Chasm

Americans should be able to count on receiving care that meets their needs and is based on the best scientific knowledge. Yet there is strong evidence that this frequently is not the case.1 Crucial reports from disciplined review bodies document the scale and gravity of the problems. Quality problems are everywhere, affecting many patients. Between the health care we have and the care we could have lies not just a gap, but a chasm.

The Committee on the Quality of Health Care in America was formed in June 1998 and charged with developing a strategy that would result in a substantial improvement in the quality of health care over the next 10 years. In carrying out this charge, the committee commissioned a detailed review of the literature on the quality of care; convened a communications workshop to identify strategies for raising the awareness of the general public and key stakeholders of quality concerns; identified environmental forces that encourage or impede efforts to improve quality; developed strategies for fostering greater accountability for quality; and identified important areas of research that should be pursued to facilitate improvements in quality.

The committee proposes six aims for improvement to address key dimensions in which today’s health care system functions at far lower levels than it can and should. Health care should be:

• Safe: avoiding injuries to patients from the care that is intended to help them.
• Effective: providing services based on scientific knowledge to all who could benefit and refraining from providing services to those not likely to benefit (avoiding underuse and overuse, respectively).
• Patient-centered: providing care that is respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decisions.
• Timely: reducing waits and sometimes harmful delays for both those who receive and those who give care.
• Efficient: avoiding waste, including waste of equipment, supplies, ideas, and energy.
• Equitable: providing care that does not vary in quality because of personal characteristics such as gender, ethnicity, geographic location, and socioeconomic status.

Read the full report online.