New! Downloadable Rubrics to Aid in Developing Patient Education Materials AND Summaries of Financial Barriers to Testing

About the Commons

With the rapid pace of scientific discovery, there is a continuing need to identify and fill gaps in the knowledge about, access to, and appropriate use of the latest oncology precision medicine tools.

While individual oncology patient advocacy and provider organizations are prioritizing development of resources, tools, and programs to support their core constituencies in taking maximum advantage of the promise of precision medicine, the Cancer Precision Medicine Commons (“the Commons”) provides a forum for information and resource sharing among these groups, to allow for collective efforts and synergistic progress.

Launched in 2021 to build upon the collaboration sparked by the successful activities of the Consistent Testing Terminology Working Group, the Commons initiative provides an opportunity for multi-stakeholder organization leaders to share information and resources aimed at advancing precision medicine for oncology patients, while identifying and collectively exploring opportunities for multi-stakeholder, cross-tumor collaborations that could engage activities through potential work groups.

The group convenes quarterly on an annual basis with workgroups that meet throughout the year. See the 2023 Year in Review.

Our Priorities

Overarching priorities for Commons members include:

  • Enhancing education and awareness of biomarker testing and genetic testing for inherited cancer risk

  • Supporting healthcare providers in community settings, including ensuring physicians have tools to interpret test results

  • Collecting/collating data to support testing recommendations

  • Reducing the complexity of testing reports

  • Implementing consistent testing terminology

  • Advance policy efforts to support access to testing, including addressing gaps in coverage and reimbursement

The Commons is hosted by LUNGevity Foundation through support from its Precision Medicine partners (see www.LUNGevity.org for more information).

Helpful Resources for Developing Patient Education Materials

The Commons has analyzed barriers and created rubrics to guide organizations in developing patient education on genetic testing for inherited cancer risks and on biomarker testing in cancer. These materials are available for download here.

Rubrics: Overarching Recommendations

Precision medicine and biomarker testing are complex topics that are difficult to convey in plain language.

When developing materials, it is important to focus on plain language, keep to an 8th grade level or below and, when possible, to develop multi-language, culturally sensitive resources that reflect the varied accessibility needs of your constituencies.

Shorter is better for most readers, particularly those with limited health literacy.

Consider using a health literacy calculator to gauge the literacy level of your materials. Materials that are brief and kept to one to two pages are best.

Patient education needs to include graphics and illustrations to communicate key points.

Make sure to include appropriate visual elements such as pictures and icons in addition to text. When sharing digitally, make sure alt text is included.

Get the rubrics

Financial and Administrative Barriers to Biomarker and Genetic Testing

Barriers to Biomarker Testing for Somatic Mutations in Cancer

  1. How do we know if a biomarker test is covered?

  2. How do we know which lab to send biomarker testing to?

  3. How are biomarker tests authorized?

  4. What if the patient's insurance plan denies the test?

  5. What if the patient is uninsured?

  6. Does the 14-day rule delay ordering the test for inpatients?

  7. Is the patient able to pay for costs associated with the testing?

  8. Overall resource burden

Barriers to Genetic Testing for Hereditary Cancer Syndromes

  1. How much is the test going to cost?

  2. How do we know if a test is covered?

  3. How do we know which lab to send it to?

  4. How are tests authorized?

  5. What if the patient's insurance plan doesn't cover testing?

  6. Overall resource burden

Get the summaries

 Planning for Commons meetings and activities is overseen by a five-member steering group, currently composed of leaders from the Cholangiocarcinoma Foundation, FightCRC, FORCE, LUNGevity Foundation, and PAIR. The initiative is managed by Wendy Selig, Founder and CEO of WSCollaborative.

2023-2024 Steering Group

Stacie Lindsey, Cholangiocarcinoma Foundation

Anjee Davis, FightCRC

Sue Friedman, FORCE

Nikki Martin, LUNGevity Foundation 

Deb Collyar, PAIR

Managed by Wendy Selig, WSCollaborative

Participating Advocacy Organizations

Participating Professional Organizations