Filling a Gap in Online Integrative Cancer Care Information

Sponsored by Beyond Conventional Cancer Therapies

By Laura Pole, RN, MSN, and Nancy Hepp, MS

February 18, 2019

From five kinds of evidence that men with cancer use in guiding decisions about complementary approaches to care, researchers found that patients put the most stock in personal stories and the least priority on rigorous scientific evidence.1 Health professionals tend to reverse this hierarchy of evidence.

Finding common ground can be challenging.

The Landscape

We have found that sites mentioning integrative cancer therapies typically fall in four broad categories:

  • Sites from large medical centers, academia and government
  • Commercial sites from clinicians, clinics or product/service manufacturers/sellers
  • Patient sites
  • Fraudulent sites

These sites vary considerably in objectivity, a foundation on evidence, recency and accuracy. A case in point, a recent study evaluated the accuracy of 150 videos on prostate cancer screening and treatment posted on YouTube. Inaccurate, biased or outdated information is not only available but is passed along through social media.2

Patients and even professionals are not well served.

The Wish List

Beyond Conventional Cancer Therapies (BCCT) is a new platform to connect people with cancer (and those who care for them) with information about integrative cancer therapies. BCCT’s mission is to inform choice in integrative cancer care. We asked patients and caregivers what they would like to see on the planned BCCT website and received these responses:

  • Complementary approaches other patients say did or didn’t help
  • Guidance on finding reputable clinicians to help put an integrative plan together or serve on an integrative team
  • What questions to ask
  • Unbiased, trustworthy information that is both broad and deep in scope
  • The science portrayed in patient-centered, nonjudgmental, clearly written, user-friendly summaries
  • Information with practical application
  • A toolkit to present to physicians
  • How to swim into the deeper part of living with cancer, discovering the difference between healing and curing, the place to explore what cancer means in their lives and what matters most

They or their researching helpers are usually pretty savvy and capable of understanding fairly complex information—they appreciate not having the summaries “dumbed down.”

Clinicians likewise told us that a website providing credible, reliable, trustworthy, up-to-date information on integrative cancer care was sorely needed:

  • Fearlessly objective
  • Patient-centered and compassionate
  • Carefully separating science and analysis
  • Encouraging mutual respect and partnership of conventional and complementary care providers
  • Providing information about off-label, overlooked and novel approaches emerging from mainstream medicine
  • Exploring taboo or controversial subjects such as psychedelic medicines and the role of intuition

Clinicians wanted the depth of the summaries to be useful to clinicians yet understandable by patients. They wanted a dependable resource to send their patients to.

The Middle Ground

BCCT differs from other sites and platforms in both scope and approach. We believe that skillfully applied conventional cancer therapies can make a difference in survival and/or quality of life. We also believe that many integrative therapies provide enormous benefit to patients and survivors, especially in managing side effects, promoting wellness and reducing risk of recurrence, but also in treating cancer. Finally, we evaluate off-label and other overlooked treatments that almost no other sites consider.

Compared to governmental and academic sites, BCCT is more patient-oriented. Like many patients, BCCT is willing to consider a broader range of therapies and, if safety is established for a therapy, a lower burden of proof for efficacy. We don’t hold therapies to a “gold” scientific standard unlikely to be met in a patient’s lifetime. We look for enough evidence to show that a therapy could realistically provide benefit compared to risk.

But BCCT is more objective and informed by evidence than many sites trying to sell or promote an approach or criticizing other approaches. Patient sites sometimes provide little information on risks or costs of therapies. We strive to provide the whole picture.

We constantly evaluate whether our sources are reliable, whether research is valid, whether an expert is qualified to speak about this therapy. BCCT does not claim to have all the answers. We pull together information for our summaries from both conventional scientific publications and informed personal experience of our advisors and other leaders in the field. We verify or validate clinical experience with published studies when possible. We are transparent regarding the sources we use, footnoting information extensively.

BCCT presents a plurality of viewpoint—even our advisors do not always agree with each other. We invite respectful dialogue, considering many different paths toward healing. We realize that, at best, we can represent the thinking and evidence regarding integrative cancer therapies at the current time. Evidence continues to accrue, and thinking evolves in response. We are continually updating our summaries based on new evidence. While BCCT does not recommend either for or against therapies, we do express opinions. These opinions can change in light of new evidence.

BCCT sees this approach as a “middle ground” that is much needed in considering integrative cancer therapies. Our advisor Leanna Standish, PhD, ND, LAc, FABNO summed up our intent: “Finally, patients and doctors have a reliable, up-to-date source of unbiased information about integrative and alternative cancer therapies.”

Beyond Conventional Cancer Therapies

Funded by a small group of passionate individuals, BCCT is a patient-centered platform. We don't take money from either mainstream pharmaceutical companies or alternative therapy practitioners. We want our readers to have confidence that we evaluate both benefits and risks of therapies according to the best available evidence.

BCCT consults leading integrative oncologists, naturopathic oncologists, oncology nurses and many other healthcare professionals, either directly or through their publications. Advisors are listed on the website, but a few names are listed here to represent the breadth of experience and viewpoints that we draw from: Donald Abrams, MD; Lise Alschuler, ND, FABNO; Keith Block, MD; Brian Bouch, MD; Lorenzo Cohen, PhD; Dwight McKee, MD; Ralph Moss, PhD; Dean Ornish, MD; Mark Renneker, MD; Gwen Stritter, MD; Leanna Standish, PhD, ND, LAc, FABNO; Debu Tripathy, MD; and Andrew Weil, MD.

For more information please visit https://bcct.ngo/.

About the Authors

Laura Pole, RN, MSN, is senior researcher for Beyond Conventional Cancer Therapies. Pole is an Oncology Clinical Nurse Specialist who has been providing integrative oncology clinical care, navigation, consultation and education services for over 30 years. She is the co-creator and co-coordinator of the Integrative Oncology Navigation Training at Smith Center for Healing and the Arts in Washington, DC. Pole also manages the "Media Watch Cancer News That You Can Use" listserv for Smith Center/Commonweal. In her role as a palliative care educator and consultant, she serves as the statewide Respecting Choices Faculty for the Virginia POST (Physician Orders for Scope of Treatment) Collaborative. Pole is also a health-supportive chef who has helped to develop the "field" of oncology culinary translation. She co-developed and now coordinates and teaches Smith Center's "From Prescription to Plate: Culinary Translation in Cancer Care and Survivorship," a professional training for oncology dietitians, nutritionists, and culinary professionals."

Nancy Hepp, MS, has a varied career background that has involved education, health and technology in several combinations. In addition to serving as Beyond Conventional Cancer Therapies (BCCT) project manager, she researches, writes and edits BCCT webpages, oversees technology issues and tries to get the research and the technology to play together nicely. Her master’s degree in instructional design (Purdue University 1988), her certificate in web design (Clark State Community College 2001) and graduate work in research and cognitive psychology (Purdue University 1985-87) have all guided her in writing and presenting information for a wide variety of audiences and uses. Hepp’s service as faculty development coordinator in the Department of Family Medicine at Wright State University (1997-99) also provided insights into medical education, medical research and medical care from the provider's perspective.

References

1. Evans M, Shaw A et al. Decisions to use complementary and alternative medicine (CAM) by male cancer patients: information-seeking roles and types of evidence used. BMC Complementary and Alternative Medicine. 2007 Aug 4;7:25.

2. Loeb S, Sengupta S et al. Dissemination of misinformative and biased information about prostate cancer on YouTube. European Urology. 2018 Nov 27. pii: S0302-2838(18)30854-6.