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Cancer Care Patient Navigation: A Call to Action

Cancer Care Patient Navigation: A Call to Action

Q & A

This section features questions and answers about key issues in cancer care patient navigation. These questions were generated from 1) roundtable discussions at ACCC's Patient Navigation Symposium, September 22, 2009, and 2) ACCC's webinar, "Cancer Care Patient Navigation," held on June 10, 2009. To access the archived webinar, click here. You'll need to log in to register.

THE NAVIGATOR POSITION

THE NAVIGATOR PROGRAM

THE NAVIGATOR: ADVANCED (Roundtable Discussion Q&A)

RESOURCES

Navigator Role

  1. Q. For the staff who assumed the navigator role, was this a new position or an addition to their other responsibilities?

    A. New positions.
  2. Q. As a nurse, I don't want to have to spend my time making appointments or checking insurance. Is there a model where a clerical person does that and then refers to an RN for navigation/ education?

    A. We utilize clerical staff to schedule and make appointments.
  3. Q. How much teaching about the patient's particular disease is involved in the navigator's role?

    A. A tremendous amount of education is completed on disease, treatments, side effects of treatment, reportable s/s to the MD office, tests, and procedures.
  4. Q. How candid should a navigator be with a patient if he or she feels a physician has not shared all treatment and surgical options, or has swayed the patient to a treatment that may not really work best for the patient?

    A. The patient can always get a second opinion. We encourage second opinions and it is accepted well by our physicians. We have a very high standard of care utilizing NCCN guidelines for our patient treatment regimens. This is actually audited at our facility.
  5. Q. Navigators seem to function much like a case manager or disease manager. How are they different?

    A. In some ways they are similar but more in depth. Navigators should follow the patient across the entire continuum (inpatient and outpatient). They are also constantly reassessing the patient/family needs and coordinating services.
  6. Q. Which department in your institution funds the nurse navigator, and what administrator do navigators generally report to?

    A. My department has its own cost center which includes operational budget and navigator salaries. The navigators usually report to a manger or director of oncology services.
  7. Q. Our patients become very emotionally connected and dependent on our navigators. Is that normal?

    A. Yes, but let me share with you a downfall we had in our beginning stages (year 2002-2004). We made our patients very dependent on us; this is not good. We were a bit too hand holding and the patients felt they needed to always check in with their navigator. Now we empower our patients/families with the tools they need to be able to navigate and understand the system. We still call and are always available for them but don’t make them dependent on us.
  8. Q. How often are your navigators calling back during the first year? I know that this is based on acuity; however, what have you seen that works?

    A. We call our patients at key times during their treatments: post surgery, post any discharge from the hospital, periodically during their chemotherapy and radiation treatments. We also try to meet with them face to face when they are at our cancer center. Each patient is different so the number of calls will vary.

Who Can Be a Navigator?

  1. Q. Are you acquainted with any navigator programs headed by a social worker (with no RN navigator) and what would that look like? Can MSW social workers be effective navigators?

    A. Some navigator programs have social workers as the navigator. The social workers would need to have resources to help in areas they are not familiar with, i.e., chemotherapy, radiation, etc. The main goal is to navigate the patient/family through the system and assess/coordinate their needs.
  2. Q. Why did you choose to use nurses for navigation versus social workers?

    A. My navigators are nurses, but I also have social workers. Our navigators are like the team captain: they assess the needs of the patients/families and coordinate the appropriate discipline, i.e., nutrition, financial assistance, genetic counseling, etc.

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ACS Patient Navigation Program

  1. Q. What are your thoughts about the ACS navigation program and how do you let your patients know the differences between a clinical navigator, lay navigator, ACS, etc.? Patients and clinicians alike are confused with the term "navigator."

    A. We have an American Cancer Society Patient Navigator at our outpatient cancer center.
  2. Q. How do you differentiate the role with a nurse navigator, and not duplicate services?

    A. We have an ACS navigator. She sees all new patients to review the resources of the ACS, our cancer center, and community resources. Check all your community agencies and how they can complement your navigation program.

Integration of Roles

  1. Q. How do your nurse navigators and CNS's work together to educate the patients?

    A. Our navigators provide some of the initial education and get them ready for the next steps, i.e., as a patient is getting ready for radiation, the navigator would review radiation but then introduce them to their nurse in radiation. We do not want to replace the specifics nurses and their specialty.
  2. Q. You mention you have outreach coordinators that track patients to a positive diagnosis. Can you describe how these coordinators get patients to start tracking and do they have any other roles besides this?

    A. Our outreach department only educates and screens individuals in the community. They follow the patients post-screening till time of diagnosis then refer to my navigators.
  3. Q. Do you have occupational or physical therapy involved in the navigation process to do range of motion or education on lymphedema prevention?

    A. Yes. They are not in our department but in our hospital system and some agencies in our community. We would work with the MD office to coordinate if necessary.
  4. Q. How many oncology clinical nurse specialists do you have, and also how do they work together with the navigators?

    A. I have one CNS; she works very closely with the navigators on program development and PI activities.
  5. Q. How much support staff/type of support staff do the navigators have?

    A. Support staff depends on your hospital resources as well as resources in the community. Meet with your support services at your site and develop a relationship with your community agencies to share support staff (complement the services).
  6. Q. Do you find that with an inpatient, that case management and navigator services cross? How do the navigators manage what they are doing and what the case managers are doing?

    A. No, but I have a unique model. The oncology discharge planners report to me. We have rounds every morning to share information across the continuum. This really helps decrease duplication for the patient/family.
  7. Q. How do you know the doctor has given the results of the positive biopsy so your call is not the first that a patient hears they have cancer? It is time consuming to call PCP's for this step?

    A. We call the MD. It's time-consuming but essential.
  8. Q. How are roles of the patient navigator and the discharge planner/case manager different?

    A. My discharge planners’ priority is to assess the patient within 8 hours of admission and set up a safe effective discharge plan. The navigators are aware of the inpatient stay for the patient but primarily follow outpatient cases.
  9. Q. What does your financial person do? There are so many financial needs: many patients are unable to follow through with paperwork, e.g., SSDIS appl, pharmaceutical programs, foundation co-pay assist programs, etc.

    A. Financial assessment, Medicaid and Medicare applications, charitable applications, pharmaceutical indigent programs, transportation, insurance auths/precerts. She is very busy.

Navigator Training

  1. Q. Have any of your navigators attended Harold P. Freeman patient navigation program and do you know the tracking tool that the program may use.

    A. We have not attended. This is a different model. We get involved once the patient is diagnosed. Our outreach department has attended.

Navigator Certification

  1. Q. Do you see any value in a certification program for a navigator? If yes, what organization would be appropriate?

    A. The National Consortium of Breast Centers offers one for nurse navigators only.
  2. Q. What national certification programs are available to navigators and do you think they are important?

    A. A reputable organization such as the Oncology Nursing Society.

Physician Buy-in

  1. Q. Do you have a specific breast surgeon? If so, what helped to get them on board for early referrals during the waiting time for all the tests prior to diagnosis?

    A. We get involved at time of diagnosis; we have nurses in the breast center that assist with the prediagnosis stages.
  2. Q. How do you market to the family practice groups in the community?

    A. I have created marketing materials, and I personally go to their office and meet the MDs and their staff.

Personnel Problems

  1. Q. If your navigator hears a consistent complaint about one nurse or doctor, for example, how is that handled?

    A. The navigator would discuss with me. I would attempt to resolve or forward to our medical director.

Program Specifics

  1. Q. How did you go about getting the pre-program survey information?

    A. Create a team to review the questions. Team members could be the medical director of your cancer program, oncology management, radiation department, medical oncology physicians, and support staff r/t oncology. Review the questions as a team.
  2. Q. In which department are your navigators located? Oncology, Breast Center, Surgery?

    A. At Christiana Care Health System we have our own department called Cancer Care Management.
  3. Q. You mentioned gathering data before and after starting a navigation program. How would you use data if you don't have the "before" data. In other words, if you didn't gather data before you started your navigator program, how and what type of data would you collect to justify your program?

    A. The tools are still great to use even if your program is in place…review the questions and develop next steps.
  4. Q. In a community cancer center providing care to 20 counties with many doctors diagnosing cancer, how do you begin with the patient prior to diagnosis?

    A. We have an Outreach Department that focuses on education and screening. My department gets involved only after the patient has been diagnosed with cancer.
  5. Q. Our particular Cancer Navigation Program isn't affiliated with a specific hospital or system, but rather supports three. Do you have any models like this? A. Our program has two hospitals and a large outpatient cancer center. As hospital systems merge, many models will be supporting more than one hospital system.
  6. Q. We track time of contact to time of treatment for NCCCP. What about patients we've already seen, but now the cancer has grown or recurred? What do we put as a first contact to time of treatment, so as not to skew the statistics?

    A. I would keep your initial tracking the same but add a new area for recurrence.
  7. Q. When do you discharge your patients? For example, if received chemotherapy and currently on anti-hormonal, do you follow them for a short period?

    A. When treatment is done ,we discharge. As per your specific example, we would discharge the patient when put on anti-hormonal treatment. We do a formal discharge call to let them know we are closing their case but let the patient know we are still there for them.
  8. Q. Must patients give consent to participate in a navigation program or is this an automatic/assumed process?

    A. Verbal or written consent should be obtained. We are fine with a verbal consent.
  9. Q. Do patients ever decline navigation services? Do you document/track these? Do you follow up later on to see if they are interested at a later date?

    A. We have not had any patients decline services. Some patients once they are comfortable with the system and their treatments may not need us as much, but we still keep in touch with them.
  10. Q. Do you have a high-risk clinic/genetic counseling component as part of the navigation process?

    A. Yes, we have three full-time genetic counselors.
  11. Q. Are you clinic based? Do you have physicians on site that work directly with the navigators assessing patients?

    A. We have employee and private practice physicians that are a part of our cancer program. They work very well with the navigators.
  12. Q. For the Breast Navigator, where do you recommend her office be located, Oncology or Breast Center?

    A. Whatever works best for your site. Our breast navigator is housed in our cancer center not specifically in the breast center. Our navigator does not get involved till after pathology.
  13. Q. Do you have any examples of rural patient navigation that begins with cancer screening services?

    A. No.

Volume

  1. Q. What percentage of your facility's diagnosed breast cancer patients per year actually take advantage of the navigator services?

    A. A very high percentage, because we get all + paths. We have 600 new analytical cases per year. I don't have a specific percentage.
  2. Q. You mention that you have 1,100-1,200 open cases. How do you decide to close cases? Is that when they are transferred into a survivorship program?

    A. 1,100-1,200 open case per month. Not new cases per month. We close at the end of their treatment. One hundred percent or very close get survivorship packets, and we encourage them to attend our survivorship multidisciplinary center.
  3. Q. Is that 150-200 per year for patient volume?

    A. Open cases per month. Not new cases per month.

Multidisciplinary Meeting

  1. Q. Can you give me a brief overview of what is required to coordinate a weekly multidisciplinary breast conference?

    A. We have a tumor conference coordinator (clerical staff). She coordinates the cases to be presented on a worksheet with the appropriate depts, i.e., radiology, pathology, medical oncology, surgery, radiation oncology. Our conferences are CME accredited. We keep attendance and outcomes of case presentations (our navigators document the recommendations).

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Case Finding

  1. Q. At what point do you see the patient after a positive pathology biopsy. Do all physicians buy into this concept? Or have you have territorial issues? What are lessons learned?

    A. We call after positive path from tumor registry. We call the MD office to make sure the patient is aware of a new diagnosis. It takes a bit of time for the MDs and their office staff to get used to navigation. There are initial territorial issues so you need to show how you can complement the care for the patients and their office. We have 100 percent buy-in, but of course some MDs are more supportive. Lessons learned: Share with them up front what care coordination/navigation means, what are the roles of the staff. Keep your MDs in the loop with developing your navigation program, get their ideas. Once you have your MDs, it makes creating your program much easier. The MD office staff is also important. Keep meeting with them to identify ways to enhance the patient experience.
  2. Q. We are putting a new program together outside our initial breast navigator program to capture other diagnosis. We want to start small. Our concern stems from patients with positive diagnostics may not be not identified by the physician in a timely manner. Comments, thoughts?

    A. Can you get positive pathology from your tumor registry data? Pathology department? Try to find opportunities to help the MD identify the patients earlier.
  3. Q. Are you aware of any cancer centers that use their tumor registry to help identify patients or to provide data in terms of patients that stay in the center for treatment or go elsewhere?

    A. Many sites use tumor registry to find + path cases. We do.
  4. Q. If you have a thoracic navigator, when does he get involved with the patient - pre- or post-diagnosis?

    A. We have a thoracic MDC. Our MDC is inclusive of a medical oncologist, radiation oncologist, and surgeon as well as the nurse navigator. All the pts are not diagnosed with cancer at our MDC. The navigator does get involved with the patients prior to surgery. Most are confirmed post surgery.

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Documentation

  1. Q. How do your navigators keep track of their patients? Are there forms or electronic tracking?

    A. We use MIDAS. It can track our volume, support services, and helps tremendously with reporting. We can build PI studies, and it can trigger us when a patient gets admitted. We use MIDAS as our record, if we need a record it would be individualized for the patient. The navigator follows the patient until treatment is completed. We get verbal consent. Our hospital uses Cerner/Powerchart as an EMR system.
  2. Q. What tools have been developed to communicate/document with physicians and other team members? IE: progress note?

    A. It depends on your MDs. We have created standing order forms by disease site and assessment tools. Some MDs want to communicate directly with our navigators. We also fax notes.
  3. Q. Do HIPAA rules make it challenging for department to department information, i.e., admissions to ER flagging?

    A. No, our patients sign consent that we will be sharing info across the continuum.
  4. Q. Do you have a sample excel or access database/spreadsheet that you could share with the group, to make tracking our patients a little easier?

    A. Yes, I have reporting that I created by category and by the specific support services. Contact me at PStrusowski@christianacare.org.
  5. Q. An acuity scale is great, but how do you keep it actively updated? What system is used?

    A. I am presently working on a new acuity system. Our last system (as you stated) we could not keep updated. Billings Clinic has an acuity system; it is in the ACCC Navigator workbook.

Billing

  1. Q. Do nurse navigator programs receive any reimbursement from insurance?

    A. No, but support services do, such as genetics, nutrition, and health psychology.
  2. Q. Can you discuss further the billing possibilities for navigation services?

    A. Medicare is researching reimbursement for patient education for a newly treated cancer patient by an RN.
  3. Q. Do you know why Medicare would only be looking at reimbursing for a nurse to be in this role versus a licensed social worker?

    A. No
  4. Q. How do you handle the uninsured/no pharmacy coverage? Do you use philanthropic funds to meet needs as well as the Hill Burton Act?

    A. We have a Special Needs Fund (through donations). W can pay up to $750/year to assist our patients. We use this to temporarily help financially until we can get additional resources set up for the patient, i.e., pharm indigent programs or charitable applications.

Budget

  1. Q. For smaller institutions, what do you feel is the best way to fund the position?

    A. Grants and philanthropic support.
  2. Q. Are there funding sources for non-breast navigation roles?

    A. Not that I am aware. There may be grants. There are also Patient Resource Navigators being established through ACS.
  3. Q. How many FTE's would you feel would be necessary for an average of 800 analytical cases per year if we wanted to have a navigator for each patient?

    A. It truly depends on their responsibilities. Every navigation program is different.
  4. Q. Do you know of any facilities that have had success receiving a grant through the Health Resources and Services Administration who received money through the Patient Navigator Act? Any other new grant resources?

    A. No, check with the American Cancer Society (ACS).
  5. Q. Do you have any suggestions about places to apply for funding - research, foundations?

    A. Not at this time.
  6. Q. What is the salary range for nurse navigators (overall and at your particular center)?

    A. In Delaware, salary would run on average $65K + benefits.
  7. Q. Does the salary range differ significantly by caseload, geographic region, and navigation model?

    A. Yes, more on geographic.

Outmigration

  1. Q. What methodology did you use for outmigration calculation (especially since cancer care is outpatient driven)?

    A. I have not collected this to date. We do know that our morbidity/mortality rates in Delaware are the fastest declining in the country, but we had more analytical cases last year (to me meaning our patients are staying with us).


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Incorporating Survivorship Services

  1. Q. Are your patient navigators reviewing with the patient survivorship plans once treatment has been completed?

    A. No. Our survivorship MDC is doing this at our facility; this may be changing as treatment summaries become more available and utilized. We are piloting the ACS treatment summary at this time.
  2. Q. How do you incorporate a survivorship program into the services that a navigator provides?

    A. We have a survivorship program that is headed up by our health psychologist. We market our survivorship program and the navigators also review with the patients.
  3. Q. What is your survivorship program?

    A. As a survivor there are new issues: Fear of reoccurrence, nutrition/exercise, how to talk to my family/coworkers, for example Our survivorship MDC is headed by our health psychologist; attendees are CNS and Comp Med Nurse.

QI

  1. Q. Can you address how you established your benchmarks for measurement?

    A. I utilize tumor registry as much as possible. I also created databases that have been in place since 2002.

Navigator Referrals

  1. Q. What algorithm does your institution use for navigator referrals?

    A. Each institution needs to work with all members of the team to develop the algorithm for referrals that the team is comfortable with and one that the navigator can accomplish. In most cases referrals come from physicians. Dependent of tumor site, if the navigator is disease specific, breast cases, for example, may be picked up in diagnostic imaging with either abnormal mammogram or as a positive biopsy; colorectal cases can be referred by a gastroenterologist and/or pathology reports; lung cases can be referred by PCP, the pulmonologist or thoracic surgeon.

Navigator Sustainability

  1. Q. What mechanism does your institution use for sustainability of the navigator role?

    A. First and foremost a physician champion is a must. If there is senior leadership buy-in to the role from the beginning, the champion can help develop critical indicators/metrics that will show value of the navigator—both soft—and hard-wired satisfaction and ROI.

    Many institutions use home-grown patient satisfaction surveys that speak to various aspects of the navigator role. Drill down on patient satisfaction surveys to determine whether patients are satisfied with the navigator and with the oncology program itself. Keep administration aware of the fact that the navigator role may differentiate your facility within a competitive market place. Remember you need to constantly educate staff about the role the navigator plays in the multidisciplinary team. The navigator does not work in a silo; the navigator is the glue of a great multidisciplinary care team.

    Capturing downstream revenue from each patient that the home institution diagnoses will keep patients in your system for all aspects of their care. This is particulary true with breast care patients seen by breast care navigators. There is substantial proof that navigators more than pay for themselves with regard to hospital financial gains as well as soft ROI patient satisfaction. Studies have shown that tumor registry volumes for cancer increase when navigators are in place.

    Tip: Measure outmigration of patients to other institutions and evaluate whether the reason is insurance driven or patient preference.

    Tip: Track the number of new patients per month, contacts by navigator, education sessions, and follow-up phone calls.

    Funding is a major roadblock in some areas of the country. Navigators are funded by the home institution, foundation money, and grateful donor gifts and grant funding. Tap into what is available in your own community and you may be surprised.

Navigator Marketing

  1. Q. How do you market the navigator role both internally within your own institution and externally to the public?

    A. Because the navigator touches on multiple process owners, integration and understanding among all staff can be challenging. Raise awareness with your institution staff at medical executive meetings, department meetings, grand rounds, and tumor boards.

    Bring attention to your navigator with a patient story in the hospital newsletter, community newspapers, support groups, community education programs, institutions website, or ask the expert column. Promote within online communities such as Facebook or Twitter. Encourage your patients to spread the word about their own positive experiences. Have them tell their family, friends, and even pass along their stories to the hospital marketing department.

    Market to primary care physician offices. Primary care physicians and site-specific specialists dependent on navigator’s role include the GYN, gastroenterologist, and pulmonologist. The physician office practice manager is the go-to person in most office practices who can make things happen. Offer them lunch and a chance to learn about your program and the navigator's role, which is to assist physicians by decreasing time they need to spend on education.

    Provide your navigator with information about referrals quickly; keep the referring physician is in the loop. Provide them with timely feedback. He or she will likely continue to refer patients into your program if he or she believes the patients are benefiting. The referring physician plants the seed for using the navigator to assist with their journey.

    Flow maps are good templates to use as you embark on marketing your program both internally and externally. Flow maps provide clear-visual guidance on the best way to provide access to care through navigation services at each institution.

Tracking Mechanisms

  1. Q. What databases or tracking mechanisms does your institution use to justify the navigator role?

    A. First, if resources are limited, start out with a handwritten report to the Cancer Committee of navigator activities. Take this a step further with an Excel spreadsheet.

    IT as well as the people who have to access and use databases should be involved in their development from the onset. IT can create an outcomes database that tracks activity as well as clinical care management. Clinical staff should be involved in developing clinical databases.

    Any software system should interface with EMR or physician practice management programs. IT challenges include the fact that most institutions are working on developing EMR systems and creation of additional work is on the bottom of their list. There is a need for systems to "talk" to each other. Some navigation systems may not "talk" to the other hospital databases, which silos the important information from other systems. Integration at the onset of development is critical to long-term success of databases.

    Tracking Resources: A database is available through the Lance Armstrong Foundation (Customer Relationship Management System). NurseNav Oncology software is a SaaS (software as a service) patient tracking solution for nurse navigators in oncology. NursNav Oncology is a sister company of EduCare.

    There are additional navigation software products available through Patient Navigation SQL. Review for cost, adaptability, and interfacing with your existing database system.

Local Resources

  1. Q. What childcare resource do you have within your community?

    A. Local Delaware Helpline and our hospital system has a resource called Child Care Connection.

Professional Resources

  1. Q. Is there a networking nurse navigator organization?

    A. Yes, there are a few nationally. One is NCONN – National Coalition of Oncology Nurse Navigators.

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