- Precision Medicine – Developing Terminology for Talking with Patients and Caregivers
- Acuity – The Critical Measure
- AONN+ FFL Navigation Certification: Overview, Value, Preparation
- Oncology Pharmaceutical Professionals Delivered Educational Opportunities and Product News and Updates
Precision Medicine – Developing Terminology for Talking with Patients and Caregivers
“As precision medicine testing and treatment options evolve, the complexity of what cancer patients and caregivers need to understand to be active members in their healthcare team has increased dramatically,” said Claire Saxton, VP, Patient Experience, Cancer Support Community. She continued, “Patients and caregivers are overwhelmed and confused by precision medicine terms and explanations of concepts that can vary significantly from provider to provider and within and across institutions. Developing clear, consistent precision medicine terminology is critically important to ensure patients are making informed decisions and receiving optimal care.” Thus, this Cancer Support Community project was created, with the overall goal of raising awareness among patients and caregivers about precision medicine and to foster and open dialogue with their healthcare team.
Cancer Support Community (CSC) is a patient advocacy organization that has local offices and “Gilda’s Clubs” in about 50 US markets, with about 1 million visits per year to their in-person service centers, healthcare and hospital partners, and satellite locations. Their Research & Training Institute conducts psychosocial research on the cancer patient and caregiver/carer experience. They then use insights gleaned from that research to inform their direct patient services and to focus their policy advocacy efforts. To that end, CSC has developed a precision medicine lexicon to use in their Frankly Speaking About Cancer: Precision Medicine materials and to create a plain language precision medicine lexicon – a set of terms and definitions that explain what patients need to know about precision medicine in easy-to-understand language. They are making this lexicon freely available for use by other healthcare providers, patients, and oncology associations and patient advocacy organizations.
From June 2020 through March 2021, the research task force employed a variety of qualitative and quantitative methodologies in arriving at the terms they included in the lexicon, with definitions of terms and concepts that would offer the widest applicability. Participants in the research focus groups and discussion boards were asked about their unaided familiarity with a body of terms and concepts. CSC then compiled a draft lexicon based on this information and further tested it in a survey distributed to a group of 600 participants representative of US cancer patients and caregivers. The researchers controlled for race, ethnicity, gender, household income, and educational attainment.
Some of the major takeaways from the research include:
- The most familiar and understood terms were “gene mutation,” “genetic mutation,” “mutation,” and “inherited mutation.”
- The main terms that required clarification were “ALK” and “non–small-cell lung cancer.”
- While participants were excited and hopeful about “precision medicine” and thought they knew what it is, few could clearly describe it.
- Similarity between “genetic” and “genomic” caused confusion. CSC now does not use the term “genomic.”
- Participants’ unaided understanding of targeted therapy was poor. Most confused it with radiation. CSC now always specifies targeted therapy drugs.
- Patients and caregivers were confused by the “alphabet soup” of biomarker acronyms and by jargon. Use sparingly.
- Always focus on what the patient needs to know. It is less important to explain everything than to make sure the patient understands their journey and what they need next.
- Testing is stressful. Waiting for results is stressful. It may be scary for patients to learn that they have one or more genetic mutations.
- It can be confusing and disappointing if results don’t show any actionable mutations.
- Patients and caregivers requested visual representations – diagrams, pictures, infographics, videos, and/or animation – whenever possible, to help explain concepts and definitions.
- In order to make a distinction between “acquired” and “inherited” mutations, CSC is continuing to use “inherited mutation” as the preferred term.
Overall, there were links to race, household income, and educational attainment, and different levels of familiarity with terms. In general, Black participants tended to report higher familiarity and understanding of terms than whites; caregivers, unsurprisingly, tended to report higher familiarity and understanding of terms than patients; patients and caregivers tended to report higher familiarity and understanding of terms than the general public.
The lexicon is free to use with patients and for organizations to develop their own materials.
“It is a living document and will be updated,” said Ms. Sexton. The Precision Medicine Plain Language Lexicon for use by oncology healthcare providers and others is available at: www.CancerSupportCommunity.org/PMPlainLanguage.
Acuity – The Critical Measure
Acuity, as the presenters stated, is the “critical measure” in oncology navigation metrics. As defined in this presentation, it is a measure of patient distress, medical and psychosocial barriers, and the complexity of illness and social determinants that indicate the necessary level of intensity of subsequent navigator interventions across the care continuum.
“Data,” said Danelle Johnston, “tells the story.” How to collect that data, and how to interpret and employ it, however, requires an appropriate tool tailored to the particular needs of the oncology navigation process.
In this panel, presenters Danelle Johnston, MSN, RN, HON-ONN-CG, OCN; Janet Kim, PhD; and Tricia Strusowski, MS, RN, who have been crucial to the launch and success of this project, reported on the progress and implementation of the Acuity Tool to date. They summarized the history of the AONN+ acuity initiative, discussed the process to identify and validate oncology barriers to care, demonstrated the Acuity Tool in use through a case study, and defined the next steps in the AONN+ Acuity Tool testing and pilot study.
From the outset of the project, the goal was to create “The Ultimate Oncology Navigation Acuity Tool” that could assist in providing safe, effective, and efficient care. The tool would be used to assess the acuity of oncology patients and determine the workload intensity of individual navigators. However, as the presenters emphasized, the tool is not a measure of workload, but rather of intensity as defined by a set of metrics. The tool also would be used to measure patient outcomes. Ideally, it would increase navigators’ effectiveness while decreasing the cost of care.
Beginning in 2018, the internal AONN+ acuity research team collaborated with Astellas to identify a National Navigation Acuity Team which then, in 2019, completed an extensive review of the literature. The acuity team decided how to dissect the evidence-based literature, splitting the team into pairs that examined the literature according to the following categories:
- Definitions of acuity, acuity tool, acuity system, barriers to care, and distress
- Categorization of barriers
- The relationship between barriers and acuity
- The relationship between distress and acuity
- Existing acuity tools
- Relationship of Patient Acuity Score relate to productivity, return on investment, staffing/caseload, effectiveness, and time-management.
Each team summarized the highlights and shared the level of evidence collected with the larger group. The entire team then decided on the key factors that would be included in the final design of the tool. Barriers to care categories were introduced with discussion around the weighing of specific barriers within each category with the realization that some barriers needed to be assigned a heavier weight to demonstrate the higher complexity related to barriers and distress. The acuity team also identified correlation between distress and barriers in navigation acuity; higher distress and more barriers equals higher acuity. They found that navigation intensity was a predictor of time spent with patients and that barriers predicted an increase in navigator time, with a 16% increase for each barrier.
Focus groups with navigators and administrators were then held at the AONN+ mid-year conference in San Diego in 2019. The research team collected navigator perceptions of the design and of the function of the acuity tool, and they also asked navigators how successful it was likely to be in their own work environment.
In addition to an overview of the steps in the development of the tool, a patient case history was presented to demonstrate how the tool could be used in the clinical setting. This case history was drawn from the evidence-based, real-world case studies that were developed for the Acuity Tool testing.
The panelists concluded that through the use of the Acuity Tool, decisions can be made more effectively and equitably because navigators and administrators can now:
- Assign caseloads based on patient acuity
- Balance workload of the navigator/s
- Identify and support AONN+ oncology navigation metrics of patient experience, clinical outcomes, and return on investment
- Support national oncology guidelines and navigator core competencies for all models of navigation in all settings
- Demonstrate navigation effectiveness.
This highly interactive presentation used several techniques to poll the audience about existing knowledge of the topic, and at the same time collected feedback to be used in subsequent research. Project next steps were also outlined and include further analysis and plans for a pilot study and implementation strategies. A literature review to support case study development was conducted and Acuity Tool: A Scoping Review will be published in a future issue of JONS.
AONN+ FFL Navigation Certification: Overview, Value, Preparation
AONN+ leadership involved in the certification and testing processes gave an overview and explanation specifically geared to first-time conference goers. Lisa Hartman, MS, MA, BSEd, BSN, RN, Director of Certification, AONN+ Foundation for Learning (FFL); Emily Gentry, BSN, RN, HON-ONN-CG, OCN, Sr. Director of Education & Program Development, AONN+; and Monica Dean, BS, HON-OPN-CG, Director of Patient Navigation Program Development, AONN+ presented an overview and the history of the certification exams, discussed the accreditation process central to professionalization, and offered suggestions and strategies to prepare to take the exam.
Navigation certification, such as the type offered by AONN+ Foundation for Learning provides a level of professionalization “to the varied things that people do under the rubric of oncology navigation,” said Ms. Hartman, and encourages professional development. Furthermore, certification creates a culture of professionalism and leadership recognized among patients, physicians, and colleagues.
Ms. Hartman reviewed the difference between a certificate and certification.
She said that while a certificate program can be an important or useful educational opportunity that may be very valuable in elevating skills in some way, it does not give you “letters” or official credentials, to put behind your name. Certification, on the other hand, is something that usually requires the holder to take a standardized exam and must be maintained. It is often subject to renewal criteria as well.
AONN+ founder Lillie Shockney had wanted to conduct professional certification exams from the beginning, however, the tests administered were not yet accredited. In 2019, the exams received accreditation after a lengthy internal process. This process to gain accreditation was a “huge undertaking and a big step in the professionalization of oncology navigation,” said Ms. Hartman.
- AONN+ FFL Exams Are Accredited Through ANAB ISO/IEC17024
- ISO (International Organization for Standardization)
- IEC (International Electrotechnical Commission)
- ANAB (The American National Standards Institute [ANSI] National Accreditation Board)
- Largest accreditation body in North America
- Services provided in >75 countries
- AONN+ is one of the first ANAB-accredited healthcare organizations
Ms. Hartman also explained the role of the Foundation for Learning vis-à-vis AONN+. She stated that the separate organization, with its own leadership, processes, and internal structure is instrumental in maintaining the “firewall” between AONN+ members and leaders and the certification process. That is, FFL guides how training classes and other preparations are structured so that AONN+ members do not have an unfair advantage in certification and testing processes.
She added that any preparation courses or materials produced or recommended by AONN+ cannot “teach to the test,” something that is important in such a specialized field. Again, it is crucial that no unfair advantage is obtained by taking a course or using any other aids or materials created or endorsed by AONN+.
Of course, Ms. Hartman said, everyone wants to know how best to prepare to sit for the exams. The FFL website is the number one resource, she said, although, admittedly, some may find it difficult simply to go to a website to glean the requisite information. Nevertheless, the website contains a number of resources that will help prepare for the test in a way that focuses not on content, but instead strengthens test-taking and studying skills.
One of those tools is the “Test Blueprint,” which Ms. Hartman emphasized is crucial in preparing for the exam. This tool provides the percentage of each domain necessary to pass the exam and can help determine how much time should be spent in preparation for each domain.
In addition, a very helpful new tool is the learning-style assessment that is available on the website. While it does not contain any information on test content, it instead helps the test- taker to understand their own learning style and how to prepare most successfully. For example, Ms. Hartman said that she is an auditory learner—so when she prepares for an exam she can use techniques and strategies most appropriate for an auditory learner. These might include pretending to teach the material to others so that she could hear herself say it—thereby reinforcing the concepts in a way she would find most useful.
Another strategy is to understand the psychology of complex multiple-choice questions. Such questions, she said, are intended to help you think critically. Learning how not to read into questions and to figure out what is actually being asked are key strategies in successful test- taking. More guidance about such insights and strategies are found in the prep guide. Ms. Hartman encouraged all prospective examinees to visit the FFL website and take advantage of all the materials collected there, as well as the other resources that are continually made available.
AONN+ FFL website https://aonnffl.org/
- Knowledge Domains
- Test Blueprints
- Recommended Resources
- Local Navigator Network (LNN)
- Navigation Colleagues/Network
- Education Opportunities Through AONN+ https://aonnonline.org/education
Oncology Pharmaceutical Professionals Delivered Educational Opportunities and Product News and Updates
The opportunity for in-depth product education sessions is among the most anticipated features of the AONN+ conference. Oncology navigators are on the front lines when it comes to new treatments in the ever-evolving field of oncology pharmacy and the exhibit hall features a wide array of specialist information and demonstrations of products and services that navigators will find of interest.
Whether aimed at career development or, in order to foster patient success, the product theaters and industry sponsored sessions bring navigators face-to-face with pharmaceutical professionals, including oncologists, researchers, and nurses, to learn about the latest research findings and best practices.
As oncology research progresses and new protocols emerge, navigators need to be aware of the potential benefits and adverse effects of the medications their patients are prescribed. In sponsored sessions that highlight a particular pharmaceutical, professional industry speakers offered their expertise and described their clinical experiences as well as presenting the most recent data on a selection of widely used treatments. Armed with these expert insights, navigators are better able to help ensure the best outcomes for their patients. We were proud to offer several such educational opportunities at this meeting, including presentations by:
- Janssen Biotech
- Bristol Myers Squibb
- GE Healthcare
- G1 Therapeutics
By attending these sessions, navigators gain up-to-date knowledge about the range of products and services available for positive patient outcomes.
As always, a highlight of the Exhibit Hall is the opportunity to meet with members of the CONQUER: the patient voice staff, AONN+’s own patient-facing publication. The CONQUER booth is filled with information for navigators on how to best leverage this outstanding resource and always offers a fun surprise or two. CONQUER magazine is always looking to add more navigator stories to our coverage! Learn more about the magazine and how to submit your articles at https://conquer-magazine.com/contribute.