“It can be emotional waiting for testing results before starting treatment”

“It can be emotional waiting for testing results before starting treatment”

The role of the oncology nurse in supporting patients and genomic education is a pivotal one, Oncology Clinical Specialist Erin Dickman, MS, RN, OCN tells Danielle Barron

Oncology nurses have a very specific, very important role when it comes to supporting patients through what can be a complex treatment journey. Can you elaborate on this?

Oncology nurses have an essential role on the healthcare team to support their patient through their cancer journey which includes any genomic-informed care. The application of genomics to oncology nursing includes adopting consistent and accurate genomic terminology, educating patients and family members about the biomarker testing process and participating in the process, understanding possible outcomes of biomarker testing and implications for cancer care, translating complex findings through patient and family education, identifying when a patient should be referred to a genetics professional, providing emotional support to patients and family through the testing process, and advocate for a precision medicine approach

Genomics and precision oncology is a relatively new field that is of increasing importance in the oncology community. How has it changed practice?

The utilization of biomarker testing to inform diagnosis, prognosis, treatment decisions, symptom management, and monitoring response to therapy has shifted many parts of cancer care and in response, the workflow and scope of the oncology nurse. For example, in some cases, biomarker testing results are part of the workup for a person newly diagnosed with cancer. It can be emotional waiting for testing results before starting treatment and the nurse is there to guide, educate, and support the patient through that time. Another example is genomic testing technologies, which has led to novel therapy advancements and additional treatment options for patients who are now living longer. Nurses are now supporting people with longer survival times and different symptom profiles.

What are the challenges in educating patients on these developments? What are the opportunities?

Genomics is complex and the rapid advancements and application of this science into practice is evolving by the day. This makes it challenging for nurses to keep up with the correct terminology and integrate the most up to date information into their practice. Many nurses lack confidence and knowledge about genomics concepts because they did not get the content in their educational preparation. ONS is working to fill this practice gap through an extensive Genomics and Precision Oncology Learning Library that includes genomics taxonomy and on-demand education that spans from 5 mins –  one hour depending on the time that you have. We have also developed clinical practice resources to be used at the point-of-care to inform conversations with patients or show them a video to prepare for their genetic counseling appointment. A clinical decision support tool, the ONS Biomarker Database, was just launched to bring precision medicine to the point-of-care for oncology nurses. It will help nurses better understand biomarker testing reports and much more.

Why did the ONS develop the Learning Library? Who is it aimed at and what kind of information does it include?

The Library of resources was created to support the oncology nurse that cares for patients that would benefit from genomic-informed care. It provides ONS developed patient education, clinical practice resources to have at your fingertips for reference in daily practice, learning activities that include bite and snack size videos, podcasts, and a free basics course that takes about one-hour – this course will launch in mid-July. All of the resources provided in the learning library were built through collaboration of nurses from a variety of backgrounds and experiences with expertise in genomics. We have an avid review process to ensure the content is up to date and reflects the current state of the science.

How important is provider-patient communications when it comes to a complex topic such as genomics and precision medicine? How can it help improve access?

Consistent communication of genomic information among healthcare professionals and between the healthcare professional and patient/caregiver is extremely important to build trust and deter misconceptions of the patient. Shared decision-making cannot occur if anyone in the decision-making has different information than another or lacks understanding. It is imperative that time is spent as healthcare providers using the same language and being knowledgeable of precision medicine offerings and then translating that information to the patient so they can make informed decisions about their care. In addition, it may provide them broader access to care and novel treatments through clinical trial eligibility.


Program update – May 2022

Program update – May 2022

Here is an update on latest developments in FT3 including ideas to get involved and engage your network.

The first quarter of 2022 has been very exciting and full of great achievements thanks to the support of the entire From Testing to Targeted Treatments (FT3) Community of Practice. We are thankful to all those who contributed and we are happy to share with you an update of the past few months from the From Testing and Targeted Treatments (FT3) program, including ideas to get involved and engage your network. 

We are delighted to confirm the recent addition of two new members to FT3, Colorectal Cancer Canada and Takeda, and warmly welcome Nicole Sheahan (Global Colon Cancer Association), Donatella Decise (Novartis) and James Creeden (Independent Expert), to the Board. Last but not least, we are pleased to announce that Sandra Blum (Roche) will join Andrea Ferris (LUNGevity) and Denis Costello (CML Advocates Network) on the FT3 Executive Committee. We are honored to be able to benefit from their support and expertise as we continue to move forward.

Please help us bring our work to the next level by sharing this update with your network, and thank you for your continued support in helping us make precision medicine a more accessible reality for patients.

Program highlights

  • Building greater awareness around all the work underway is an important focus in 2022. Ben (Comprehensive Cancer Center Munich), Andrea (LUNGevity) and Denis (CML Advocates) represented FT3 in a multistakeholder panel at the Festival of Genomics & Biodata on the 28th of January. The event was founded on the social mission to bring the benefits of omics to patients faster and reached over 7000 participants. We are continuing to assess different opportunities to increase the visibility of FT3 at upcoming conferences and events. Please let us know what activities and events you have planned that we can link to, and which events/conferences you will be attending or presenting at this year.
  • Following 2 public consultations, the Precision Medicine Q&A Builder and the Patient Information Needs Map are now being piloted in colorectal cancer in collaboration with DiCE, GCCA, and Colorectal Cancer Canada. Maria and Barry from Colorectal Cancer Canada, Marianna from DiCE, and Nicole from GCCA are helping us make great progress with the colorectal cancer pilot. We will begin by testing a Q&A resource builder for colorectal cancer and a first draft of a country agnostic colorectal cancer condition card.
  • The latest adaptable tool for PM champions, the biomarker testing for cancer treatment adaptable resource, is now available for feedback. We thank Jean Jenkins, Karen Wood, Christine Ghione, Krystin Larkin, Lisa Giuroiu, Maria Watson, Susan McClure and others for their expertise and hard work in putting this resource together. You can find the resource and access the public consultation here. Share with us your feedback and help us bring this resource to the next level of maturity
  • Over 110+ advanced precision medicine educational resources have been mapped and are now available on Precision Medicine Synapse. These resources aim to help patient advocates and POs better navigate the field of precision medicine. Please refer us to other advanced resources and tools designed to support patient advocates and patient organizations so they can be included. 
  • We are continuing the engagement and collaboration around Tell the Story of Precision Medicine, where we are co-creating a storyline that explains what precision medicine is, with its promises and challenges, from the lens and experience of patients. We thank all the contributors that worked hard for the refinement of the current draft v.04. This is expected to be hosted in the FT3 website: the wireframe and mockup are also being co-created and will be shared for feedback in May. Please review the current draft and share it with your colleagues and network to gather inputs and ideas. 
  • We have kick-started an analysis of good practice resources around targeted therapies to build on them and co-create a new adaptable resource for PM champions. In order to develop a first outline, please share with us your interest in this workstream so that we can include you in upcoming calls
  • We have kick-started a narrative literature review focused on provider-patient communication. We aim to shed light on research that has explored the complexities of communication in precision medicine, including aspects such as shared decision making, expectations and psychological impact. The publication will deliver conclusions from previous research on how healthcare teams can support and be supported in managing these considerations. 
  • A second version of the visualization of patient stories for the library of patient stories in precision medicine has been developed. Moving forward, the focus will be on adding more stories to the library and improving on the actionability of the stories, aligning with upcoming disease awareness days and piloting opportunities. 
  • The FT3 community members have stressed that data education in PM is an important area, including the ability of patients & healthcare professionals to understand, interpret and discuss biomarker test results, enabling informed decisions as well as better management of expectations. We are forming a Data Education sub-working group to address these barriers. Please contact vincent@thesynergist.org if you are interested in being involved in this project
  • The Stakeholder Expectations Matrix was completed and findings were presented to the FT3 community members. The interviews generated important insights on expectations of different stakeholders of each other in PM and priority actions by stakeholder group, and confirmed the need for cross-stakeholder collaboration to bring together current programs and best practices to support more universal access to PM globally. We thank Andrea Ferris (LUNGevity), Jo Gumbs (OcuMel UK), Julia Barenghi (DiCE), Andrea Stevens (Janssen), James Creeden (FMI), Peter Krein (Loxo Oncology) and Benjamin Horbach (Roche) and many others for their expertise and leadership in guiding this effort. As a next step, we are discussing a potential publication of findings with the sub-group.
  • A new Country & Condition Card has been developed for Germany, starting in lung cancer, and cards in other countries including the U.K. are being developed. We are working on a prototype card for Ontario, Canada which would be our first regional card, enabling comparisons of PM availability within countries. .  We have also drafted the first country agnostic card for colorectal cancer, which would provide advocates with a snapshot of the general availability of precision medicine tests and treatments for colorectal cancer irrespective of geography. We plan on completing more country agnostic condition cards throughout the year. Let us know if you would be interested in developing a Country & Condition Card for a given geography or condition.