Improving the quality of life for cancer patients via a CANCER CENTER CARES™ Program

Improving the quality of life for cancer patients via a CANCER CENTER CARES™ Program

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Joseph Bauer started this petition to collinsf@mail.nih.gov and

Cancer care for patients should be standardized and predictable with a patient advocate for every patient no matter what facility or location. This approach will cost very little to implement but will help reduce patient anxiety, streamline treatments, create accountability and most importantly improve quality of life and overall patient outcomes.

I have been a cancer researcher for more than 25 years now and have worked at a National Cancer Institute (NCI)-designated Comprehensive Cancer Center (CCC). It wasn’t until my father’s death from glioblastoma multiforme (brain cancer) that I became aware of the deficiencies in cancer medicine, such as poor communication and lack of transparency in the treatment process, which has been shown to negatively influence patient outcomes (1).

One recurring issue expressed by my mom, father, sister and my own observations during my dad’s treatment was a lack of communication as well as uncertainty in the treatment process including a discussion of open clinical trials as possible treatment options.  Available services such as palliative and hospice care  are completely absent in the National Comprehensive Cancer Network (NCCN) cancer treatment guidelines (2).  In addition, services such as physical therapy and other rehabilitation services are minimally promoted although essential to improving quality of life and lowering patient morbidity (3). Taken together, this translated to a lack of caring; that my father was just a number.  A lack of communication and transparency is a major complaint throughout all of health care which is a detriment to overall outcomes.

The National Cancer Centers program established in 1971 consists of 71 NCI-designated Cancer Centers which currently do not provide a standardized and predictable structure to reduce patient anxiety and promote a better quality of life and treatment outcomes. 

NCCN guidelines must require that a clinician include a discussion of clinical trials for which a patient is eligible as part of the treatment process, even if those trials are at another institution. 

The overall survival of cancer patients could be improved if a National Institutional Review Board (IRB) was implemented which provided patient access to clinical trials regardless of the main clinical trial site. In addition, establishing a National Patient Tumor Registry and Depository, maintained by the NCI, would be used to support personalized treatment options for cancer patients(4).

I recommend a CANCER CENTER CARES™ Initiative as a requirement for all NCI CCC-designated institutions that receive NCI funding and support.

IMPLEMENTATION OF a CANCER CENTER CARES CONCIERGE™

In addition, I recommend the creation of a CARES CONCIERGE™ which would be a social worker or project manager that is assigned to each patient to shepherd them through the clinical treatment process and be a first point of contact. This individual(s) would be funded by NCI directly to provide autonomy in their efforts to provide a patient-first approach to care.

In addition, a standardized approach should be implemented at all NCI CCCs such as  CARE™ FOCAL POINTS which better define the treatment process and provides standardization across all CCCs so that a patient at one CCC can easily receive care at any CCC in a transparent manner and with the comfort of knowing in advance all steps in the treatment process.

IMPLEMENTATION OF CANCER CENTER CARES™ ROADMAP

1) Every NCI CCC, as a requirement of CCC-designation, will provide 10-Care Focal Points to achieve comprehensive patient care which starts with patient consults prior to any treatment.

Care Focus I) CARE™ CONCIERGE – social worker etc provides program overview; serves as conduit between patient and medical team.

Care Focus II) Surgical Oncology Consult (if applicable)

Care Focus III) Radiation Oncology Consult (if applicable)

Care Focus IV) Medical Oncology Consult

Care Focus V) Precision Medicine Consult/Clinical Trial Consult which examines the pros and cons of all trials a patient is eligible including biopsy to Precision Medicine Tumor Profile Testing Facility

Care Focus VI) Patient Tumor Registry testing and inclusion Consult

Care Focus VII) Psycho-Oncology Consult provides awareness of the importance of treating mental health issues before they occur.

Care Focus VIII) Integrative Medicine/Functional Medicine Consult – diet and supplement planning

Care Focus VIX) Home Health CARE; provides overview of options, so patient and family are aware and can plan accordingly with confidence: PT, OT, Nursing, Speech Therapy etc

Care Focus X) Hospice CARE

NCI CCC websites should be revamped to highlight the CANCER CENTER CARES™ Program and informational brochures should be made available to patients to further solidify the program.

2) NCI CCC’s must work with a Precision Oncology Testing Facility such as CARIS, FOUNDATION MEDICINE, and TEMPUS. and require all clinicians (biopsy permitting) to provide care options based on personalized molecular/genetic profiles to guide treatment options as a requirement of CCC-status.

3) NCI establishes and maintains an international, open-access, International Cancer Patient Registry which integrates with the AACR Project GENIEORIEN and the LLS Registry which shares demographic, molecular/genetic, and outcome data to aid the clinician in selecting appropriate treatment options. ALL NCI CCC’s must participate to maintain CCC-designation.

 

Cc: Francis S. Collins, MD, PhD Director, National Institutes of Health (NIH)

Cc:  Norman E. "Ned"  Sharpless, M.D. Director, National Cancer Institute (NCI)

Cc: Robert W. Carlson, MD Chief Executive Officer (CEO) at the National Comprehensive Cancer Network (NCCN). 

 

REFERENCE

(1) Suzanne Wait, Daniel Han, Vivek Muthu, Kathy Oliver, Szymon Chrostowski, Francesco Florindi, Francesco de Lorenzo, Benjamin Gandouet, Gilliosa Spurrier, Bettina Ryll, Lieve Wierinck, Thomas Szucs, Rainer Hess, Titta Rosvall-Puplett, Alexander Roediger, Jason Arora, Wendy Yared, Sabrina Hanna, Karin Steinmann, Matti Aapro, Towards sustainable cancer care: Reducing inefficiencies, improving outcomes—A policy report from the All.Can initiative,Journal of Cancer Policy, Volume 13, 2017, Pages 47-64,ISSN 2213-5383

(2) Mo L, Urbauer DL, Bruera E, Hui D. Recommendations for Palliative and Hospice Care in NCCN Guidelines for Treatment of Cancer. Oncologist. 2020 Sep 11. doi: 10.1002/ONCO.13515. Epub ahead of print. PMID: 32915490.

(3) Stout NL, Santa Mina D, Lyons KD, Robb K, Silver JK. A systematic review of rehabilitation and exercise recommendations in oncology guidelines. CA Cancer J Clin. 2020 Oct 27. doi: 10.3322/caac.21639. Epub ahead of print. PMID: 33107982.

(4) Elmore LW, Greer SF, Daniels EC, Saxe CC, Melner MH, Krawiec GM, Cance WG, Phelps WC. Blueprint for cancer research: Critical gaps and opportunities. CA Cancer J Clin. 2020 Dec 16. doi: 10.3322/caac.21652. Epub ahead of print. PMID: 33326126.

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