Patient Advocates Learn from Each Other


Key takeaways from the National Comprehensive Cancer Network® (NCCN)’s Patient Advocacy Summit reveal progress made toward improving survivorship care and planning, and identify opportunities for improvement.

Cancer survivorship care and planning incorporates a wide spectrum of patient support. It touches on medical, social, emotional, psychological and financial aspects of a survivor’s life.

Who Owns My Journey?

To address this range of issues, the National Comprehensive Cancer Network® (NCCN) brought together patient advocates from across the United States at the Patient Advocacy Summit in Washington DC on December 1. The meeting offered a forum for advocacy organizations to share best practices. It also featured a panel discussion on navigating the cancer survivorship landscape from a multi-stakeholder perspective — including advocates, cancer survivors, employers, pharmaceutical and biotech industry representatives, clinicians, and national health care non-profits.

One of the central topics of discussion at the summit was the lack of ownership of post-treatment patient care. When a patient’s initial treatment is over, there are often side effects or after-effects that require management, comorbidities that need a doctor’s attention, and additional follow-up care. Who should the patient go to for help with issues that arise? Should the oncologist be the first line, or should the patient reach out to their primary care physician? Or do they go to a different specialist if there is a significant comorbidity? Patients are unclear on what path to take, and panelists noted that the doctors themselves are not always sure.

Yelak Biru, a panelist who has been living with multiple myeloma for 23 years and participates in advocacy organizations and groups, recommended that patients take charge of their own cancer journey, ensuring that careful records of medical treatments can be shared easily between providers.

Though the Commission on Cancer (Survivorship Care Plan Standard 3.3) has mandated that survivorship care plans be put in place, panelists have said that these are slow to be implemented, and vary in quality. The American Society of Clinical Oncology offers a sample plan that panelists recommended for use. Providers are supposed to work with survivors to ensure that they have survivorship care plans, and if they don’t have a plan in place, they should talk with their doctors about it.

Some doctors are resistant to implementing care plans because of the amount of time it would take to create them, as well as the lack of data available to prove that they are effective. The plans may also be difficult to create because a person’s medical history may be scattered among different providers, resulting in disparate and incomplete records. Privacy concerns also create barriers to the development of a comprehensive patient record.

Palliative Care

“The way to really fix this is to have a universal electronic health record,” said Linda House, RN, BSN, MSM, President of the headquarters office of the Cancer Support Community. At this, murmurs of assent rumbled through the room.

Supporting Younger People with Cancer

Palliative care was a hot topic of discussion at the Patient Advocacy Summit. Palliative care is becoming more acceptable at earlier stages of patients’ treatment cycles, and is being talked about more as “supportive care,” because of the stigma surrounding the word “palliative” and its association with end-of-life care. Panelists agreed that this was a positive development. Yet the trend toward allowing earlier access is challenged by doctors’ hesitancy to prescribe opioids because of the current opioid epidemic in the United States.

Another area of focus at the summit was the emerging population of people younger than 50 years old being diagnosed with colorectal cancer, and the lack of resources to address issues specific to this age group, noted Andi Dwyer, Program Manager of Fight Colorectal Cancer. Questions around sexual activity, fertility and employment are important to this demographic, but these concerns are often under-supported. Their age and comfort with technology makes these patients more likely to use social media, and many advocacy groups are taking advantage of this to bring people together around shared issues in the online space.

Psychological Well-Being

With Facebook and online private group options, “people are getting the chance to be very discreet,” said Andi. “Candid, but not for the entire online community.”

People who have been diagnosed with cancer, as well as their caregivers, have psychological and emotional concerns that are not always addressed by their providers. Often, health care teams don’t have conversations with their patients around distress. But this is changing. Providers are starting to offer distress screening, and when a red flag is identified, they are referred to a social worker. However, one challenge is that there is no data to prove when the best time is to administer distress screening.

“If you give a distress test right after a person receives a diagnosis, then of course they will have a high level of distress,” said Crystal Denlinger, M.D., FACP, Assistant Professor, Chief of Gastrointestinal Medical Oncology, Director of the Survivorship Program and Deputy Director of the Phase 1 Program at Fox Chase Cancer Center. “When on the continuum, and how frequently, do you measure distress?”

Patient Education

This was recognized by the panel as an ongoing issue.

Three Years From Now

The great need for clear, simple patient education was noted as in important issue in survivorship care. Dorothy Phillips, Executive Director of the Florida Society of Clinical Oncology (FLASCO), shared her organization’s recent efforts to educate people who are living with cancer. The goals of FLASCO’s Patient Advocacy Program are to bring together cancer patients, survivors, caregivers, oncology experts and corporate supporters in a relaxed environment to learn and exchange information about specific types of cancer, treatment options, assistance programs, and the role of the caregiver. These very successful programs are usually held in the evenings, and provide time for attendees to network. Many people bring family members or caregivers — an added bonus. There are no slides allowed to make this a comfortable environment where specialists sit around the table with invitees and discuss cancer and what it means to the patient.

Moderator Clifford Goodman, Ph.D., from The Lewin Group, wrapped up a panel entitled, “A Viewpoint on Cancer Survivorship” with this final question: Three years from now, at the end of 2020, what is doable to make a substantial improvement in how we support cancer survivors?

Here were the panelists’ answers:

  • Kendall Bergman, M.A., Program Manager of LIVESTRONG: “I think that we can help patients understand the importance of physical activity after cancer, and improve their quality of life as they move through survivorship. Also, (education around) fertility.”
  • Yelak Biru: “Well-designed clinical trials that include patient input.”
  • George Dahlman, CEO of the Children’s Cause for Cancer Advocacy: “We can develop a treatment summary that people can take with them. Also, survivorship screening could be covered by insurance.”
  • Andi Dwyer: “Improved patient and provider communication and connection. Improved communication between specialists as well.”
  • Linda House: “Improved data collection and access to information that is relevant to the patient.”

If You Could Make One Change

A panel — called “Navigating the Cancer: Survivorship Landscape from a Multi-Stakeholder Perspective” — brought together the diverse insights of oncologists, a researcher, advocacy representatives, and a doctor who works for the pharmaceutical company, Novartis. In this panel discussion, Goodman asked another summary question: If you could make one change in regulation, policy, or in mandated data collection, what would that be as far as helping you to leverage a change in survivorship?

Here were the panelists answers:

  • Ken Braun, a cancer survivor retired from Employers Health Coalition: “I’d like to see more work being done to look at caregiver evidence and data.”
  • Crystal Denlinger: “Reimbursement is a big issue. One of the things we are governed by as providers is what we are reimbursed for. So making sure that we are reimbursed for the efforts that we do in survivorship. It’s a diagnostic code.”
  • Christopher Lieu, M.D., Assistant Professor of Medicine at the University of Colorado Cancer Center: “Mandatory and reimbursed survivorship visit at the completion of treatment with mandatory reporting of the treatment summary plan to the patient primary care provider.”
  • Dorothy Phillips: “Reimbursement for nurse navigators.”
  • Julia Rowland, Ph.D., Strategic Advisor to the Smith Center for Healing and the Arts, and former Director of the Office of Cancer Survivorship at the National Cancer Institute: “We need a Congressional requirement for deeper investment in survivorship science.”
  • Richard Woodman, M.D., Senior Vice President and Head of U.S. Clinical Development and Medical Affairs, Novartis: “Easy. The patients need to own their own data. It’s not owned by the companies that own electronic health records, or that own analytics systems. Patients own their own data.”
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