Tag Archives: patient-centered care

Next Steps for Value Frameworks?

by Amanda Patton, ACCC Communications

ACCC17-Value Framework Panel (2)The mantra of “moving from volume to value” is ubiquitous in healthcare today.  So what do cancer programs need to know about evolving value frameworks in oncology? Attendees at the ACCC 43rd Annual Meeting, CANCERSCAPE, in Washington, D.C., heard real-time updates on two of the leading frameworks—ASCO’s work-in-progress Value Framework  and NCCN’s Evidence Blocks™.

Both value frameworks aim to be tools used in support of patient―physician shared decision-making according to panelists Stephen Grubbs, MD, FASCO, Vice President of Clinical Affairs, American Society of Clinical Oncology, and Robert Carlson, MD, CEO, National Comprehensive Cancer Network.

ASCO’s Value Framework was not built on drug pricing, but to have a discussion with a patient on potential financial toxicity and the benefit of the treatment in the context of how much the treatment will cost the patient, explained Dr. Grubbs. ASCO’s framework uses three primary parameters to calculate value: clinical benefit, toxicities of treatment, and cost. “Our goal at ASCO is to develop a tool that could be customized with information for each individual patient,” said Dr. Grubbs.

After receiving more than 400 comments on its original Value Framework draft, ASCO published a revised version in May 2016.  Grubbs made clear, however, that ASCO’s framework is still a work in progress. “It’s not yet ready for use,” he stressed.

In 2017 ASCO is working on improving the framework methodology, Dr. Grubbs explained, noting that a current weakness is that the framework is set up to compare a randomized clinical trial between two different treatments.  “If I have a treatment where I use drug A versus drug B, and than I have a trial that compares drug B to drug C—how do I compare drug A to drug C?” Work is underway at ASCO to address cross-trial comparisons and also to “anchor the net health benefit score in some meaningful way,” Grubbs shared. Finally, ASCO will continue work with patient advocates and patients to identify endpoints that are meaningful for patients.

On the other hand, NCCN’s Evidence Blocks are operationalized. NCCN’s goal was to create a “flexible value system that could be used to develop each patient’s equation for what is valuable,” said Robert Carlson, MD, CEO, National Comprehensive Cancer Network. NCCN Evidence Blocks are built on five metrics:

  • Effectiveness (efficacy)
  • Safety (adverse events, toxicities)
  • Data quality
  • Data consistency
  • Affordability

The Evidence Blocks are presented in a graphic format so that a user can look for “30 different options in about 4 or 5 seconds and come up with regimens that would be optimal for a specific circumstance,” Dr. Carlson said.

Like ASCO, NCCN intends the Evidence Blocks to support a patient-centered approach to integrating a value discussion into everyday practice. “We look at Evidence Blocks as a conversation starter, not an answer,” Carlson said.  “We don’t tell the patient, because the Evidence Block looks like this, this is what you should do. It’s a question of what’s most important to them.”

Currently, 33 of the NCCN guidelines have Evidence Blocks associated with them. By the end of 2018 all of the NCCN guidelines that have systemic therapies should have Evidence Blocks, according to Carlson. NCCN also intends to expand the Evidence Blocks into other treatment modalities. “We are now starting to look at other modalities, radiation oncology, surgical oncology, and diagnostics . . . in terms of the same sort of scales,” he said.

Rounding out the discussion, panelist Ali McBride, PharmD, MS, BCPS, The University of Arizona Cancer Center added perspective on the cost/value discussion as it may unfold on the frontlines of care. “Many patients may not be able to afford the 20% copay cost for IV therapy, let alone the out of pocket cost for many oral therapies,” he said. “We have to spend a lot of time detailing out those costs for patients, and if they can’t afford it, we have to say, then what’s our next step in that guideline pathway?”

All three panelists noted the need for financial transparency for patients and providers as one component of the value discussion.

In closing, panel moderator Christian Downs, JD, MHA, Executive Director, ACCC, asked panelists to consider what the value framework discussion might look like 10 years down the road.

Acknowledging the difficulty of making any predictions about the future shape of the oncology value discussion, Dr. Carlson envisions technology playing a pivotal role. “My own expectation and hope is that within a decade we will have computer-based systems that patients are able to interact with directly and help define and discover their own value system,” he said. Such a system would enable patients to indicate if they were more concerned with neurotoxicity or cardiotoxicity, for example. Plus the system would also have the capacity to query payers so that patients could know the financial impact of their therapy.

Big data (if the promise is realized) may change the face of value frameworks, noted Dr. Grubbs.  The potential of extensive real-world databases will bring “much more information on what happens to patients outside the narrow clinical trial that has the best, the most robust patients. . . [and extend to] what happens in the real-world. . . . if we had a big data system that had all this information about what happened to everybody and you could really home in on what happens to a 75-year-old person who was not in the clinical trial and have the cost data, you might come up with a very different looking value [framework] from what we’re showing you here today.”

Finally, as value frameworks continue to evolve, community cancer programs and practices have an important role to play, panelists agreed.  “There’s a huge reservoir of expertise and experience in community oncology, and we’d love to tap that, to learn from that. [One of the] ways you can help us, is to continually give us feedback in terms of whether we have it right or wrong. . . . talk to us,” Dr. Carlson said.

Dr. Grubbs concurred, adding that community oncologists are key to making value frameworks functional. “When you see this come out, please make comments back to ASCO on how to make this better, because nobody is going to get this right…right from the beginning.”

CANCERSCAPE Kicks Off with Perspectives on Policy and Business

by Amanda Patton, ACCC Communications

Last week’s events on Capitol Hill provided a dramatic backdrop for the ACCC 43rd Annual Meeting, CANCERSCAPE, March 29-31, bringing together hundreds of oncology professionals from around the country for insights, strategies, and perspective in the midst of healthcare reform ambiguities.

Cancerscape 2017-keynote panelIn a keynote session Thursday morning, policy insiders Kavita Patel, MD, MS, of The Brookings Institution, and Dan Todd, JD, Todd Strategy, LLC, shared insights on possible next steps toward Affordable Care Act (ACA) repeal or repair under the Trump Administration. ACCC Health Policy Director Leah Ralph moderated the point-counterpoint discussion covering what went wrong with the House Republicans’ American Health Care Act (AHCA) legislative effort at ACA repeal, mounting political pressures on Capitol Hill, legislative or administrative options to effect ACA repair, flaws in the design of the faltering individual insurance exchanges and what may (or may not) happen next, and whether the Administration will act on the hot button issue of drug pricing.

Cancerscape 2017 keynote panel 2Asked for one final takeaway that attendees should bring back to their programs to help their colleagues understand the policy landscape, Dr. Patel shared this perspective for frontline clinicians and administrators:

“No matter who is the party in power there’s always going to be this emphasis on cost. I don’t see the pressure to decrease costs going away. It may come in the form of programs like MIPS and commercial programs like ACOs and patient-centered medical homes, but as a physician who is in all of those programs, it’s all about having me [as a physician] understand where I’m over utilizing care . . . . If there’s one takeaway . . . it’s not to sit . . . and wait to see how things shake out.” Start looking for where you have unwarranted variation, where you can start implementing programs that actually matter to patients, Dr. Patel advised. “Take back some introspective ability to look at your variation, look at your costs, look at all the things that fall into P & L for administrators and how do you translate that to where clinical care is delivered.”

Dan Todd left attendees with one final advocacy takeaway: “It’s a new Administration with training wheels still on. . . they’ll ultimately get their balance. . . . If you have priorities, educate your congressional members on [them]. . . your voice is really, really important.”

For more, read OncLive’s coverage of the session here.

Conway-The Advisory BoardThe morning’s second session shifted the focus outside the Beltway to explore emerging cancer care delivery trends and potential impact on the business of providing cancer care. Lindsay Conway, MSEd, of The Advisory Board, briefed attendees on The State of Today’s Cancer Programs, highlighting five key trends shaping the delivery and business cancer care delivery:

  • Healthcare reimbursement and reform is at a pivotal point. Uncertainty continues around the future of the ACA and the insurance exchanges.
  • Increasing numbers of cancer patients with comorbidities requiring enhanced care coordination. From 2000 to 2010, the number of Medicare patients with multiple chronic conditions grew 22%. Proactive steps in care coordination for this population include regular distress screening to identify issues early and devising and implementing care maps for navigators.
  • Telehealth technology bringing care to patients where they are. These technologies and emerging patient-centered tools—ranging from real-time virtual visits, to phone apps, to patient portals, to remote patient monitoring—have tremendous capacity for expanding patient access to care
  • Growth of healthcare consumerism requiring cost and quality information. There are growing online resources for healthcare review, cost and quality information. To address consumerism in cancer care, it’s important for cancer programs to provide information to help patients select the right provider and the right services.
  • Genomic medicine is transforming cancer care. With the rapid pace of change in this area, cancer programs are challenged to invest carefully as they move forward to integrate precision medicine into practice.

More coverage on this session is available here.  To learn more about the ACCC 43rd Annual Meeting, CANCERSCAPE,  visit us at accc-cancer.org.

Oncology Social Workers’ Role in Patient-Centered Care

By Fran Becker, LCSW, OSW-C

JPG-2017SWM-LogoWebMarch is National Social Work Month.  This year, the National Association of Social Workers’ theme is “Social Workers Stand Up.”  This is a time to acknowledge the contributions of all social workers.  Some social workers are part of a team, others work independently—all are patient centered in their approach to care.  Oncology social workers are part of this proud group—but our work differs in several ways.  While master’s degree prepared social workers are trained in assessing the psychosocial needs of their clients and in provision of a range of services, oncology social workers often have additional expertise and specialized clinical training in the meaning and impact of a cancer diagnosis on patients and their families.

Oncology social workers must have a working knowledge of cancer treatments, the side effects of treatment, and the psychosocial impact on the patient and family.  This skill set is a broad one, especially for those working in community cancer centers who are called on to help patients and families at all stages of illness and diagnoses. Oncology social workers may assist patients with a wide range of concerns, including issues faced by patients at high risk of cancer, those newly diagnosed, patients in active treatment, as well as helping with survivorship, palliative care, and end-of-life issues.

Oncology social workers need to be knowledgeable about individual and family coping styles, resources, clinical interventions, and employ a myriad of other skills to help patients and families manage the multidimensional (emotional, financial, and physical) impact of a cancer diagnosis through their long journey. This management can range from distress and depression screening to assisting with transportation issues. It can encompass educating patients (and their caregivers) about stress management and self-care. It can entail working with parents on how to talk about cancer in an age-appropriate way with their children or with employees on how to discuss their needs with their employers, and extend to finding community resources to assist with a number of problems.  And, at times, it is sitting with a family facing the loss of a beloved family member.

Key to success as an oncology social worker is the ability to be present, to engage open-heartedly with empathy and compassion, to start where the patient is, focus on hearing the patient and/or family needs, and helping them to meet those needs, which may range from a simple referral to managing complex multidimensional issues.

I often hear—“Your job must be very hard, I don’t know how you do it.” In my career as an oncology social worker, one of the most important things that I’ve learned after 30 years of working with cancer patients and their families is that it is a privilege to walk alongside them during their journey, whatever the outcome.  There are fears and tears, but laughter and warmth, too. To me, oncology patients and their families are role models of courage and grace in the face of an often traumatic and life-changing experience.

As we join in marking National Social Work Month, I would like to acknowledge my fellow oncology social workers and say “thank you” for your contributions as part of the multidisciplinary cancer care team.


Guest blogger Fran Becker, LCSW, OSW-C, is manager of Cancer Support Services, Carl & Dorothy Bennett Cancer Center, Stamford Hospital, and a past member of the ACCC Board of Trustees.

ACCC thanks all oncology social workers for their efforts as part of the multidisciplinary team delivering patient-centered care in cancer programs across the country.

Enhancing the Value Proposition: Embedding Palliative Care Services in the Oncology Setting

By Susan van der Sommen, MHA, CMPE, FACHE

nurse and patient holding hands 2In a feature article in the January/February edition of Oncology Issues, Patsy Astarita, LCSW-C, OSW-C, and Michelle Abramowski, MSN, CRNP, share how the Kaufman Cancer Center in north central Maryland developed a palliative care program from the inside out. Though the existing infrastructure of the Kaufman Cancer Center included some palliative care resources, their challenges in developing the program were similar to those faced by other cancer programs: a dearth of existing funding, a navigation program focused on newly diagnosed patients rather than those at the end of life, and limited outpatient palliative care resources, among others.

Despite these challenges, the interdisciplinary care team at Kaufman Cancer Center garnered the requisite leadership support, performed a literature search of evidence-based best practices, and, building upon their existing resources, developed a palliative care program that has met its stated goals: reducing hospital use of chemotherapy at the end of life, while increasing early referrals to hospice and advance care planning. In 2016 Kaufman Cancer Center was recognized with an ACCC Innovator Award for their forward-thinking efforts expanding access to palliative care.

Often confused with hospice (utilized for end-of-life care), palliative care services are intended to provide a patient-centered approach to anticipating—and  thus reducing—pain and suffering, while improving quality of life by addressing the physical, social, emotional, and spiritual needs of the patient and family. According to a study performed by the American Society of Clinical Oncology (ASCO) Ad Hoc Palliative Care Expert Panel, patients with advanced cancer should receive “dedicated palliative care services” within eight weeks of diagnosis, offered concurrently with active treatment. The same study suggests that palliative care services offered early in the treatment process promote clarification of treatment goals, assistance with medical decision-making, enhanced care coordination, and a reduction in stress for the patient, family, and caregivers. Another benefit of introducing palliative care services early in the treatment process is cost reduction and savings through reduced hospital readmissions and emergency room use in the last 30 days of life.

To streamline their processes, the team at Kaufman Cancer Center developed a palliative care screening tool very similar to the psychosocial distress screening tool that has become familiar to most cancer programs in the United States. The five-question palliative care screening tool, now embedded in their EHR, has a 13-point scale that assists the care team in determining if the patient is appropriate for a palliative care referral. Embedding these services into their workflow is further enhanced by a weekly Palliative Care Conference during which team members discuss and review cases to determine next steps for patients and their family and caregivers. Also included in their ongoing programmatic development is a resiliency program to help support their staff as they work with patients during vulnerable times in their lives.

When working to initiate or expand palliative care services in the outpatient setting, most cancer programs face a host of challenges: lack of resources and/or budget; multiple, and sometimes conflicting, priorities; disparate and often disconnected programs. Despite these challenges, the team at the Kaufman Cancer Center did what cancer programs do best: put the patient at the center of their planning processes and developed a program that has improved care and satisfaction while reducing costs.


Contributing blogger Susan van der Sommen, MHA, CMPE, FACHE, is Executive Director, DSRIP, Bassett Healthcare Network, and Chair of the ACCC Editorial Committee.

Learn more about the ACCC Innovator Awards program here.

Medicare Oncology Care Model: Opportunities for Social Work Participation

By Fran Becker, LCSW, OSW-C

ThinkstockPhotos-467463476The oncology community continues to follow developments with the Center for Medicare and Medicaid Innovation (CMMI) Oncology Care Model (OCM), a program that aims to improve patient care, efficiency, effectiveness, and lower costs.

As participating cancer programs implement the changes mandated by the OCM, increased responsibilities for social work are clear.  In fact, under the model, the involvement of, and coordination with, social work is needed in a number of areas.

The OCM mandates that all patients receive patient navigation and supportive services during their treatment. These services encompass assistance in a number of areas, including financial, transportation, and facilitation of follow-up services.

As a component of the OCM, Medicare is requiring the documentation of a comprehensive Care Management Plan described in the National Academies (formerly, known as the Institute of Medicine) report, Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. All patients are to receive a care plan consisting of 13 items.  Among these, there are two areas that call for social work services:

Advance Care Plans – Social work has been involved in these conversations for some time in many settings. In fact, Medicare has revised payment policies to include advance care planning (CPT code 99497; add-on CPT code 99498). While the physician is the primary provider in advance care planning conversations, members of the cancer care team, including social work and other allied healthcare professionals, have an opportunity to be involved in these conversations

Distress Screening – Another important requirement under the OCM is screening for depression during each episode of care. As part of the patient’s care plan, OCM participants are required to screen and document a plan to address a patient’s psychosocial health needs. While many cancer programs screen for distress using the NCCN Distress Thermometer, Medicare has determined that this tool is not sufficient to screen for depression under the OCM, and asks OCM participants to use the PHQ-2 and PHQ-9 for depression screening.  The PHQ-2 self-report asks two questions to determine if a more extensive evaluation is needed.  If the patient scores at a three or above, the patient is asked to complete the lengthier PHQ-9.  During this meeting, if the patient screens in for depression, social work involvement escalates.  Social work has several options for helping patients, including offering counseling services in-house or referral to an outside agency, referral to the patient’s primary care provider, oncologist, or a psychiatrist. Even if the program is providing clinical social work services, follow-up on these referrals is needed to ensure patients follow through. In addition, social work is required to follow the patient to assess improvement or the need for additional services.

Social workers play an important role in helping OCM participating programs succeed under this innovative new model. Practices that are not participating in the OCM should do a self-assessment in terms of their social work capabilities, and their ability to support patients’ psychosocial health needs. As signaled through CMMI’s inclusion of social work and patient navigation services in the OCM model, this holistic approach to cancer treatment is sure to be the future of oncology care.

If you are a participating OCM practice, be sure to join ACCC’s OCM Collaborative, an online community of OCM practices sharing best practices, tools, and tips to succeed in the OCM. Join today.


Guest blogger Fran Becker, LCSW, OSW-C, is manager of Cancer Support Services, Carl & Dorothy Bennett Cancer Center, Stamford Hospital, and a past member of the ACCC Board of Trustees.

Navigators: Communicating Your Role

By Tricia Strusowski, RN, MS

Patient Navigation Healthcare CompassAlthough patient navigation services are becoming more common at cancer programs nationwide, physicians and administrators still frequently ask, “What are the responsibilities of the navigator?” Navigators coordinate care and remove barriers across the care continuum, which can potentially include many responsibilities. It is very important for navigators to be able to articulate their role concisely so that there is no room for misinterpretation. It is also important to share the Commission on Cancer Standards, Chapter 3: Continuum of Care Services, and navigator competencies/position statements from national organizations such as the Association of Oncology Social Work (AOSW), the Academy of Oncology Nurse & Patient Navigators (AONN+), and the Oncology Nursing Society (ONS), just to name a few.

Over the past year I’ve had several cancer programs request a tool to educate their physicians, office staff, and other departments on the role of the navigator and oncology support staff.  For programs looking for a similar tool, here are two sample questions and suggested answers. These can be customized to reflect your cancer program’s structure and its navigation and support staff responsibilities.

Example 1:

What is a navigator and what are the Commission on Cancer (CoC) Standards for Navigation?

Navigation Definition:
C-Change defines navigation as “individualized assistance offered to patients, families, and caregivers to help overcome health care system barriers and facilitate timely access to quality medical and psychosocial care from pre-diagnosis through all phases of the cancer experience.”

Commission on Cancer Standards, Chapter 3: Continuum of Care Services

Standard 3.1: Patient Navigation Process
A patient navigation process, driven by a community needs assessment, is established to address health care disparities and barriers to care for patients. Resources to address identified barriers may be provided either on-site or by referral to community-based or national organizations. The navigation process is evaluated, documented, and reported to the Cancer Committee annually. The patient navigation process is modified or enhanced each year to address additional barriers identified by the community needs assessment.

Standard 3.2: Psychosocial Distress Screening
The Cancer Committee develops and implements a process to integrate and monitor on-site psychosocial distress screening and referral for the provision of psychosocial care.

The psychosocial representative on the cancer committee (oncology social worker, clinical psychologist or other mental health professional trained in the psychosocial aspects of cancer care) is required to oversee this activity and report to the cancer committee annually.

Timing of screening: Patients with cancer are offered screening for distress a minimum of 1 time per patient at a pivotal medical visit to be determined by the program. Some examples of a “pivotal medical visit” include time of diagnosis, presurgical and postsurgical visits, and first visit with the medical oncologist to discuss chemotherapy, routine visit with a radiation oncologist, or a post-chemotherapy follow-up visit. Preference is given to pivotal medical visits at times of greatest risk for distress such as at time of diagnosis, transitions during treatment (such as from chemotherapy to radiation therapy) and transitions off treatment.

Standard 3.3: Survivorship Care Plan

The cancer committee develops and implements a process to disseminate a comprehensive care summary and follow-up plan to patients with cancer who are completing cancer treatment. The process is monitored, evaluated, and presented at least annually to the cancer committee and documented in the minutes.

Include navigation position statements based on your navigation model. Use the following organizations:

Oncology Nursing Society Nurse Navigation Core Competencies

Academy of Oncology Nurse and Patient Navigators, Definition of Models of Navigation

Oncology Nursing Society, Association of Oncology Social Work, and National Association of Social Workers joint Position Statement on Navigation

Example 2:

How can the Navigator and Support Staff help your office?
Call us at _______________________________________

Nurse Navigator:
A nurse navigator provides patients and their families with education and assistance to overcome healthcare barriers and assist with timely access to quality medical and psychosocial care across the continuum of care.

 How can the nurse navigator help? 

  • Provide a comprehensive assessment/psychosocial distress screening of the patient/family needs, introduction of appropriate support services.
  • Reinforce education with patient patients/families regarding disease, treatments, side effects, and adverse reactions.
  • Link patients with community agencies and resources.
  • Make follow-up calls to patients/families at home.
  • Review support groups and educational programs for patients/families.
  • Educate patients on reportable signs/symptoms, based on physician’s plan of care.
  • Follow-up with patients’/families’ status post (s/p) discharge to ensure services are set up as planned. Coordinate with inpatient staff.
  • Conduct performance improvement (PI) projects.
  • Participate in Tumor Site Team and tumor conferences.

Social Worker:
A social worker can assist patients and their families with information on internal and external resources, financial, practical, and emotional concerns during their cancer journey.

 How can the social worker help? 

  • Provide counseling for patients and families.
  • Perform psychosocial assessments.
  • Offer and facilitate Support Groups.
  • Assist with completion of charitable application/patient assistance applications.
  • Assist with medication applications.
  • Evaluate patient for Medicaid/Medicare eligibility.
  • Provide transportation resources.
  • Identify community resources.
  • Coordinate Community Assistance Program.
  • Educate on Hospice.
  • Assist with end-of-life decision making.
  • Provide bereavement follow-up.

Registered Dietitian:
A registered dietitian is an expert in dietetics; that is, human nutrition and the regulation of diet. A dietitian advises oncology patients on what to eat in order to lead a healthy lifestyle or to achieve a specific health-related goal.

 How can a registered dietitian help?

  • Screen high-risk patients.
  • Provide group and individual nutrition counseling.
  • Connect patients with community and national resources.

 Genetic Counselor:
A genetic counselor can offer education, testing and counseling for patients (and families) with a history of cancer. Cancers may or may not be inherited.

How can a genetic counselor help? 

  • Provide risk assessment.
  • Provide genetic testing.
  • Provide genetic counseling.
  • Discuss strategies for risk reduction.

These are just two examples of how to create a tool to clearly and concisely explain the roles and responsibilities of navigators and support staff at a cancer program. These can be modified to describe the specific responsibilities for these roles at your cancer program. I encourage navigators to go forth and educate about your role.


Guest blogger ACCC member Tricia Strusowski, MS, RN, is a consultant with Oncology Solutions, LLC.

The Cancer Registry’s Role in Creating Survivorship Care Plans

by Barbara J. Dearmon, BS, CTR

Solutions on corkboard (small)Survivorship Care Plans  are required by facilities accredited by the American College of Surgeons Commission on Cancer (CoC) and the National Accreditation Program for Breast Centers (NAPBC). These plans assist patients in being active participants in their post-treatment plan of care. The Survivorship Care Plan (SCP) helps promote continuity of care, provides a plan for future care, alerts the patient to delayed effects long after treatment has concluded, and provides a source document to share with future providers. Having a SCP helps patients maintain appropriate follow-up, such that late effects can be properly managed and recurrences identified and treated quickly. The SCP also provides the opportunity to address psychosocial and other health issues related to the cancer experience. The CoC’s Survivorship Care Plan requirements are outlined in Standard 3.3; the NAPBC’s requirements are detailed in Standard 2.20.

St. Vincent’s Medical Center Riverside in Jacksonville, Florida, is accredited by both the CoC and NAPBC. To meet these organizations’ SCP standards, St. Vincent established a Survivorship Committee in 2014 to examine the requirements and develop a process for disseminating SCPs and comprehensive treatment summaries to cancer patients who completed cancer treatment at the facility. The process also included a system to monitor and evaluate these efforts annually. The Survivorship Committee was multidisciplinary and included representatives from administration, cancer registry, information services, medical oncology, radiation oncology, surgery, clinical staff (physicians and nursing), and the survivorship nurse navigator.

The Survivorship Committee unanimously agreed that the cancer registry was the most complete data source for creating SCPs and treatment summaries to meet compliance with both standard-setting organizations. The cancer registry currently captures the majority of required data elements that will ultimately be included in these care plans. Some cancer registry software applications have the ability to interface data into a preformatted care plan template or Word document. St. Vincent’s reviewed several resources and decided to use Journey Forward, which interfaced easily with its cancer registry database. Policies and procedures were established to guide the process. Specific policies outlined the roles of the cancer registry staff and the survivorship nurse navigator and detailed the purpose, case eligibility, and dissemination process for the Survivorship Care Plans.

Role of the Cancer Registry:

  • The cancer registry generates a list of eligible cases abstracted using the cancer registry software and exports the data into Journey Forward.
  • The information for the care plans derived from the cancer registry database includes: cancer diagnosis, demographics, first course of treatment, stage of disease, and treating physicians. Treatment information to be captured includes chemotherapy, drugs administered (start and end dates), hormones, immunotherapy, radiation, and surgery.
  • Follow-up information on date-of-last contact is captured on the template. Cases are selected retrospectively, eight months from date-of-first contact at facility.
  • The cancer registry interfaces (exports) registry data into Journey Forward’s breast, colon, and lung templates.
  • For the primary sites that to do not correspond with Journey Forward templates, the cancer registry saves the information in a secured Excel file on a shared drive. The survivorship nurse navigator, with assistance from the cancer registry, manually enters demographics, treatment, stage, physician contact, and prognostic indicators into the Journey Forward’s generic template. The completed templates generated monthly from the registry database are saved in a folder located on the secured shared drive for the survivorship nurse navigator to access.

Role of the Survivorship Nurse Navigator:

  • The survivorship nurse navigator accesses the shared drive and selects the current cases for the month. The survivorship nurse navigation obtains from patient records and/or the physician office the clinical documentation necessary to complete the survivorship care plan and treatment summary.
  • The survivorship nurse navigator reviews information for accuracy and contacts the cancer registry if there are questions related to data interfaced from the registry database.
  • The survivorship nurse navigator works with outside physician offices to obtain necessary information to complete the remaining care plans.
  • The survivorship nurse navigator contacts the patient and offers an appointment to review the SCP in-person.
  • If the patient declines an appointment, a hard copy of the SCP with a cover letter and contact information is mailed to both the patient and the patient’s primary care provider.
  • All correspondence with the patient is documented in Nursenav Oncology, St. Vincent’s nurse navigator software. In addition to generating templates in Journey Forward, clinical staff use Nursenav to chart information and all correspondence with patients.
  • The survivorship nurse navigator maintains an electronic copy of all completed SCPs.

The Survivorship Care Plan process at St. Vincent’s is evaluated and monitored on a regular basis by the survivorship nurse navigator and the facility’s Cancer Committee. Tracking to ensure compliance with the process is presented to the Cancer Committee and the breast program leadership annually at a minimum.

Implementation of a Survivorship Care Plans benefits patients, who will be better informed about the treatment they’ve received and the resources available to ensure continuity of care. There are a variety of ways for a facility to develop Survivorship Care Plans and to ensure these plans are disseminated and the needed follow-up conducted. At St. Vincent’s, the multidisciplinary team that formed its Survivorship Committee, believed the cancer registry and the survivorship nurse navigator played critical roles. As facilities develop their process for implementing SCP plans, they too may want to consider the role of the cancer registry. Resources to help a facility get started include the American Cancer Society; American Society of Clinical Oncology; Institute of Medicine; Journey Forward; LIVESTRONG; and the National Cancer Institute.


Guest blogger Barbara J. Dearmon, BS, CTR, is manager, Oncology Support Services, at ACCC Cancer Program Member St. Vincent’s Medical Center, Jacksonville, Florida.

Creating a Navigator Orientation Checklist

By Tricia Strusowski, MS, RN

Compass pointing at answers-SMALLI remember when I first started our oncology navigation program in 1998; there were no national standards or core competencies for navigation. The only model I was aware of that followed the patient through different levels of care was the case management model. The goals of the case management model were to coordinate the patient’s care at the appropriate setting while keeping costs down. We discussed the plan of care with the physician and also spoke with the patient and their family to discuss their specific needs and whether their care could be handled at home or whether they needed an alternative care setting or level of care.  

Fast forward to 2016. Today navigation has support from the Institute of Medicine,  the Commission on Cancer has added a navigation standard to its Cancer Program Standards, the Oncology Nursing Society (ONS) has developed oncology nurse navigator  core competencies, and there is a joint position statement on the role of oncology nursing and oncology social work in patient navigation from ONS,  the Association of Oncology Social Work (AOSW), and the National Association of Social Workers (NASW). (Note: The George Washington University Cancer Center has developed core competencies for non-clinical patient navigators.) Today, our navigation programs follow the patient across the care continuum from the earliest point of entry though survivorship or end-of-life services.

Despite the fact that we now have navigation standards and core competencies in place, I still hear from navigators, “I was hired and told, ‘Go navigate.’ I had no idea what that meant.”

So, how do we teach our new navigators? Typically nurses come to the navigator role from varied backgrounds—the inpatient oncology unit, chemotherapy infusion suite, radiation oncology, and home care, just to name a few.

As with any new job, a robust orientation is key; a full navigation curriculum including an orientation checklist and annual competencies is essential for a solid foundation. Here is one example of the elements a navigator orientation checklist might include:

Navigator Orientation Checklist

  • Hospital-specific policies/procedures and mandatory educational programs
  • Navigation history, definition, and models of navigation
  • Benefits and goals of navigation
  • Job description, roles and responsibilities of navigator, and support staff
  • Commission on Cancer Standards and Cancer Committee responsibilities
  • Institute of Medicine; Delivering High-Quality Cancer Care
  • NCCN, ASCO, and other national guidelines
  • Referrals to the navigation program
  • Internal resources, roles and responsibilities:
    Social workers
    Registered dietitian
    Financial assistant/advocate
    Health psychologist
    Pastoral Care
    Genetic counseling
    Cancer  registry
    Rehabilitation team
    Palliative Care team
    Hospice team
    Other, __________________________________________________
  • Community resources, list_____________________________________________
  • Patient educational materials, i.e., disease–site-specific information, clinical trials, patient journal, etc.
  • Caregiver toolkit and resources
  • Assessment tools, documentation and reporting
  • Communication and managing transitions with the patient, family and/or caregiver
  • Communication among the healthcare team, internal and external resources
  • Patient experience survey process
  • Performance improvement models and initiatives:
    Patient experience
    Clinical outcomes
    Business performance
  • Support groups and educational programs
  • Tumor conference responsibilities
  • Multidisciplinary participation and responsibilities
  • Professional organizations and certification
    AONN, Academy of Oncology Nurse Navigators
    Association of Oncology Social Work
  • Other, list _________________________­­­­­­­­­­­­­­­­­­­­­­­­_____________________________________

This orientation checklist is just a foundation for your new oncology navigator; adjust to your specific needs and navigation model. Remember: a good orientation is key for your new navigator’s success.


Guest blogger ACCC member Tricia Strusowski, MS, RN, is a consultant with Oncology Solutions, LLC.

Radiation Therapists’ Role in Patient-Centered Care

By Bryan M. Schmalhofer, MBA

Hands-creating-circle-of-supportA new ACCC white paper, Empowering Patients, Engaging Providers: The Future of Patient-Centered Care in Oncology explores current challenges and barriers, and what’s needed to make headway in improving patient-centered oncology care. Derived from discussion at the ACCC 2016 Institute for the Future of Oncology forum, the report identifies seven elements required to provide true patient-centered care: patient stories, navigation and coordination, interdisciplinary teams, appropriate reimbursement for services rendered, greater education, information technology connectivity and transparency, and decision-support tools. For this blog post, I’d like to zero in on the first item: knowing the patient’s story. Or put another way, knowing the person, and not just the patient. Our current healthcare environment—with time constraints, data collection and reporting requirements—can make it challenging to know our patients’ stories. That said, we know that members of our multidisciplinary care teams do get to know our patients—one such team member is the radiation therapist.

Radiation Therapists & Patient-Centered Care

Patients undergoing radiation therapy will often interact with radiation therapists on a daily basis for weeks. While our patients and their family members cannot typically discern whether the radiation therapy treatment we are delivering is working, or if it will have a positive benefit in the future—what they do register is a warm greeting and the smiling face and listening ear of the radiation therapist delivering the treatment together with all of the members of the radiation oncology team. This daily contact between radiation therapists and their patients can have a profound impact on the patient experience and the quality of patient-centered care. Therapists have the unique perspective of being able to observe subtle changes in a patient’s demeanor and side effects, both new and ongoing sequelae. Often the skin changes seen by the nurse and physician during the weekly treatment visit can change markedly over the course of the week. Radiation therapists seeing these skin changes can have an important effect on the patient’s experience with radiation oncology by serving as another care touch point or intervention prior to the weekend. Examples include something as simple as changing the type of cream the patient uses to making sure the patient has the proper pain medication before the weekend.

By listening to their patients’ concerns, fears, and questions, radiation therapists not only get to know their patients, but also can help create an environment where the patients feel like they are at the center of their care. For example, given the complex nature of radiation therapies, one of the key drivers to patient satisfaction is the management and explanation of the side effects they will face during treatment and recovery. In fact, this point is specifically measured by the Press Ganey patient satisfaction survey that asks patients to rate the “Explanation of how to manage radiation therapy side effects.”

At WellSpan Health, the Oncology Service Line, has chosen to evaluate this measure and its effect on patient-centered care by adding another “touch point” with the therapists on a weekly basis. Our weekly on-treatment visits (OTVs) are done typically on a Monday. The therapists review the patient’s previous OTV note, and on Thursday the therapists ask specific, pointed questions concerning side effects that were raised and discussed during the OTV. The therapist then documents that these issues were discussed with the patient. I believe this adds to the level of communication, care coordination, and patient-centric care the patient experiences during their radiation therapy treatments and demonstrates a true patient-centered approach to their care and overall well-being.

The Institute of Medicine (IOM) has described patient-centered care delivery as “providing care that is respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decisions.” On the frontlines of cancer care delivery, radiation therapists are often the “face” of radiation therapy, providing a welcoming presence and connecting with patients to help improve their care experience.


Guest blogger Bryan M. Schmalhofer, MBA, is manager, Radiation Oncology Operations at ACCC Cancer Program Member WellSpan Health, York Cancer Center. He also serves on the ACCC Editorial Committee.

Helping AYA Patients to Be Loud

By Amanda Patton, ACCC Communications

What does it mean to “be loud”? Sometimes it means just being heard.

Lauren Lux speaks at the ACCC 33rd National Oncology Conference.

Lauren Lux speaks at the ACCC 33rd National Oncology Conference.

For adolescent and young adult (AYAs) cancer patients, that can be a challenge. Two powerful sessions at last week’s ACCC 33rd National Oncology Conference focused on how to “hear” the voice of AYAs and understand what patient-centered care looks like to this under-served patient population. This two-part blog series recaps key session takeaways.

In the opening session of the conference, Lauren Lux, LCSW, UNC Lineberger Comprehensive Cancer Center, along with Niklaus and Lucy Steiner, co-founders of the Be Loud! Sophie Foundation, reminded the hundreds of conference attendees just how important it is to raise the volume about the unique and unmet needs of AYA cancer patients. In establishing the Be Loud! Sophie Foundation, the Steiners are honoring the vision of their daughter, Sophie Steiner, who passed away in 2013. The foundation’s name comes from lines of a poem Sophie wrote:

The Steiners speak at the ACCC 33rd National Oncology Conference.

The Steiners speak at the ACCC 33rd National Oncology Conference.

. . . Be loud

And move with grace

Explode with light

Have no fear…

Sophie’s vision was to help young cancer patients stay true to themselves in the face of overwhelming illness. The foundation has helped create the Adolescent and Young Adult Program at UNC Lineberger Comprehensive Cancer Center.

Why Be Loud?

Each year nearly 70,000 AYAs (roughly between the ages of 15 and 38) are diagnosed with cancer, Lux said. This group is:

  • Severely under-represented in clinical trials
  • Less likely to access “adult” oncology support services
  • More likely to experience financial toxicity as a side effect of cancer
  • Seeing only a modest increase in cure rates over recent decades.

The bottom line: AYAs have unique and unmet needs, Lux said.

How can cancer care providers better “hear” AYAs—and help these patients’ needs be addressed? The first step is establishing effective communication. Lux, who is director of the Adolescent and Young Adult Program at the UNC Lineberger Comprehensive Cancer Center, shared practical communication tips for connecting with and empowering AYAs. “You don’t have to be cool,” she reassured attendees. What you do have to be is:

  • authentic
  • flexible
  • compassionate
  • honest
  • willing to get to know the PERSON not just the PATIENT

A second step is to recognize how important having some control over their lives is to AYAs. “I consider myself an ‘opt in’ activity for people,” said Lux. Rather than scheduled appointments, she will drop by patients’ rooms and ask if the timing is good for them. She also encourages lots of visits from friends. The Steiners, too, stressed how important it is for AYAs to have connection with the non-medical, outside world.

Have the Sex Talk

Conversations about fertility preservation and sexual activity are not one-time events for AYAs, Lux said. Fertility preservation is a huge issue for this patient population. It is expensive and is usually not covered by insurance. AYAs need information about sex before, during, and after treatment, and these conversations should also involve their partners, she emphasized. For cancer programs, it is essential to decide who on the care team “owns” having this conversation with patients and their significant others, she said. “When no one owns it, it doesn’t happen.”

With the AYA population, the caregiver role is complex and nuanced. Helping ensure that adolescent and young adult patients are empowered to voice their choices is important, Lux said, and it’s important to empower them in their conversations with their providers.

Take Action

Lux offered some no-cost steps that cancer programs can take today to improve care for their AYA patients:

  • Schedule AYA clinic days—arrange for adolescent and young adult patients to come to clinic on the same day
  • Create an AYA Advisory Council
  • Explore social media options, for example, blogs
  • Provide information on local and national AYA organizations
  • Check out online resources, such as Stupid Cancer and Stupid Cancer meet ups.

The session’s number one takeaway: Ask your AYA patients what’s important to them.


Learn more in part two: “Life, Interrupted, One AYA Patient’s Cancer Journey.”