Dear Friends,
I am excited to announce the launch of our Metastatic Breast Cancer Collateral Damage project. I’ve mentioned it briefly in this report over the last few months, but the plans are now more fully in place and we can share details about the project.
About three years ago we created a project to crowdsource information on breast cancer patients’ and survivors’ experiences during and after their treatment, in their own words. This lead to a formal Quality of Life questionnaire released last year through the Health of Women (HOW) Study™.
This project uses the data from the Quality of Life questionnaire as the basis to document the collateral damage specifically experienced by metastatic breast cancer (MBC) patients. Our goal for this project is to use the data to develop a set of guidelines for the healthcare system to improve the quality of life for women and men who are dealing MBC today, or who might in the future.
As a first step, we have enlisted an Advocate Task Force to guide the process and ensure that we remain true to the patient perspective. Advocates with metastatic disease will be involved at every step. Our advocates will be coming to Los Angeles in early April to spend the day at our offices, meeting with our collaborators, and reviewing the details of the project. While all of the advocates in this group are metastatic patients, they represent a diverse group, with different breast cancer types, ages, ethnicities, and genders.
One of Dr. Love’s regular refrains is that, most often, patient reported outcomes are still only patients answering the questions researchers ask. But those questions – which are likely what the researchers are interested in – often don’t truly cover the full spectrum of patient experience. We plan to directly ask the community to tell us the issues that are most important to the quality of their lives. We are enlisting experts in analyzing text responses as well as developing questionnaires to make sure that the data will also be respected by the researcher community.
The plan is:
- Crowdsource from the metastatic community the full breadth of collateral damage experienced throughout the course of treatment. This will help us document the actual issues for people living with metastatic disease. Some of the topics we anticipate include:
- Patient-provider communication
- Collateral Damage issues and their management including not just physical symptoms but workplace impact, financial toxicity, and psychosocial consequences of having metastatic disease
- Who in the healthcare team is best positioned to help and where palliative care is integrated into the system
- How these issues affect diverse populations
- We will then combine the data from last year’s Quality of Life questionnaire, and the crowdsourcing exercise, as well as additional data aggregated from our community partners, and guidance from our Advocate Task Force, to develop a formal qualitative questionnaire and release it through the HOW Study late this summer.
- The final step will be to present the data to a panel of Provider-Survivors, health care providers who have also experienced being treated for cancer. We think this is important because a group of only providers are more likely to look at the data and develop recommendations that easily fit within our current system but don’t necessarily address patients’ needs. Patients, on the other hand, might make recommendations that address their needs, but are unworkable within our system. This way, people who have experience on both sides will be making recommendations that have a better likelihood of being adopted by providers and serving patients’ needs.
Our goal is a set of recommendations that will help significantly improve the quality of life of MBC patients.
While we continue working toward our goal to eradicate breast cancer, we can not ignore the women and men who are living with the disease today. It is only by acknowledging the toll that this disease takes from all who experience it, that we can make advances to improve and extend their lives.
We look forward to working with all of you on this project and will be reporting all along the way on our progress!
Warm regards,
Heather
