What to Know About Getting Access to New Cancer Advances Presented at Scientific Meetings

September 14, 2022
Manali I. Patel, MD, MPH, MS

Manali I. Patel, MD, MPH, MS, is an assistant professor of medicine in the Division of Oncology at the Stanford University School of Medicine in Stanford, California, and a staff oncologist at the VA Palo Alto Health Care System in Palo Alto, California. Dr. Patel's research involves evaluating systems-level and social factors that influence disparities in cancer. Dr. Patel is also the 2022 Cancer.Net Associate Editor for Health Equity. You can follow Dr. Patel on Twitter. Dr. Patel’s disclosure information can be found in her individual biography linked to above.

The ASCO Annual Meeting is one of the largest global meetings among oncologists and other health care professionals to discuss scientific advances in cancer detection, prevention, treatment, and care delivery. Each year at scientific meetings like the ASCO Annual Meeting, research is presented that may be important to your care now or in the future. Many people with cancer, however, may not have access to these new advances. This may be because people with cancer may not be aware of the research or meeting, their doctors may not discuss them or be aware of them, the findings may not be applicable to their care, or a new advance may not be available at their treatment center.

If you have heard about research presented at a scientific meeting that you are interested in, it is important to consider ways that you can discuss this new advance with your care team and understand how this new information may be important to your own care. Here’s what to know about talking through research with your care team and getting access to the latest advances.

How to start the conversation with your care team about news you see from scientific meetings

After a scientific meeting, you can begin to ask your care team questions about the information that was presented. Blockbuster headlines on news media may leave out important details about the studies that are difficult to understand, so one thing you can do is to ask your doctor what they think are the most important data presented and how you may gain access to the information. Possible questions to ask include:

  • What is some of the most important information presented at the meeting?

  • How can I read about or listen to the most important information that was presented at the meeting?

  • What patient-friendly resources would you recommend I look at now that the meeting is over?

Questions to ask about research presented at scientific meetings that may be important to your care

If you see news about research presented at a scientific meeting that may be relevant to your cancer care, it is important to discuss with your care team what the new information is and how it may be important to your own care.

Remember that information presented at a scientific meeting may not be available or even accessible to everyone, and the new treatments or approaches may also not be available to everyone right away. Therefore, it is important that you ask your care team about how you can receive timely care with the new advance if the care is recommended and important for you personally. Ensuring that you can gain access to the information that was presented is also critical so that you can be informed about the new care and make your own choices about the recommended care.

Questions to ask may include:

  • Was there any new information presented at the meeting that may be important to my own care right now?

  • Why is the new information important or not important to my own care right now?

  • Are there details about the new information that you think would be important for me to know?

  • How much experience do you have with this research that was presented?

  • How can I receive this new care right now?

  • How soon do I need to receive this new care?

  • What problems do you think I would need to watch out for with this new care?

  • Where can I learn more about this new treatment?

Often, information presented at a meeting may not be important to your care right now. However, that does not mean that it may not be important to your care in the future. It is important to know if there was any information presented at a meeting that may help to guide your care in the future. It is also important for you to gain access to the information about potential care so that you can be informed about future recommendations.

Questions to ask your care team about future care include:

  • Was there any new information presented at the meeting that may be important to my own care in the future?

  • How can I receive such new care in the future?

  • Where can I learn more about this new care?

How to contribute to cancer research

If you are interested in getting involved with cancer research, there are many ways to do so. One way is to participate in the studies themselves. There are many different types of studies, including clinical trials, studies that follow people over a certain period of time, and survey studies that ask you to answer specific questions. You can also participate in research by sharing your information with organizations like Count Me In, which provides medical data to researchers upon request to help them inform future research. Ask your health care team about what studies may be available for you to participate in.

Another way to get involved with cancer research is by joining a patient advocacy group. Many clinics have patient advisory boards or smaller groups that can use your insights to inform the way that care is delivered at the clinic. There are also patient groups that help to create studies. Many studies require patient voices in every step of the study, from designing the study to helping ensure that the information is accessible and delivered to people after the study has ended. You can ask your health care team for opportunities to contribute to designing or giving feedback on ongoing studies or cancer care.

Finally, patients can help with the development process of creating clinical practice guidelines that incorporate important research findings from studies into patient care. Clinical practice guidelines are created to help guide doctors in making diagnostic and treatment recommendations for their patients. Patients can participate by joining panels for the development of guidelines, which are published by medical societies such as ASCO. Talk with your health care team about opportunities to participate in guideline panels.

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