There is a great post on social media and cancer patients’ perspectives and empowerment by Janet Freeman at Gray Connections.
The post can be found at http://grayconnections.net/2015/02/20/epatients-on-the-front-lines-precision-medicine-the-fda-and-me/.
With Janet’s permission, I have also copied and pasted it at the end of this post.
Cancer touches my heart personally and professionally. I have been hearing about “patient empowerment” and “patient involvement” in decision-making activities on cancer care, cancer research, and implementation of health policies. I had, however, never seen how much the patients could directly improve things (e.g. by supporting each other and sharing knowledge) and drive the cancer research field by making links with researchers, funding agencies, and being an advocate for each other so successfully at so many different levels.
Until today.
I am hopeful that there will be more advocates, like Janet and many others, for cancer patients.
I am hopeful that one day cancer will stop to be stigmatized and we will be able to have an open communication about it without judgement and with appropriate level of empathy and understanding. I hope one day, cancer diagnosis will not be used against cancer patients.
Thanks again Janet for letting me to share your post.
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EPATIENTS ON THE FRONT LINES: PRECISION MEDICINE, THE FDA, AND ME
On February 19, 2015, I was an invited patient advocate speaker at the 11th Annual Moores Cancer Center Industry/Academia Translational Oncology Symposium. My topic, “EPatients on the Front Lines: Precision Medicine, the FDA, and Me,” explained how cancer research could move faster and be more successful if researchers, pharmaceutical companies, and the biotech industry would collaborate with patients early in the trial design process.
You can see my slides here:
Here’s the text of the speech, along with the links on the slides.
| # | Slide | Speech |
| 1 | Title | Thank you for inviting me to speak to you today. I’m going to share a view of precision medicine from the patient’s perspective. If I seem a bit tense, blame it on the PET scan I’ll have 4 days from now. I’ll post the speech on my blog tomorrow, so you don’t have to take notes. |
| 2 | Genome Scarf | This is the legacy of an epatient. It’s a genome scarf. It represents the chromosome 18 base pair sequence of colonrectal cancer patient Jay Lake. Jay was a prolific science fiction author and my friend.http://maryrobinettekowal.com/journal/jay-lake-genome-scarf/ |
| 3 | Genome Scarf and Jay pic | Jay was example of an epatient: a patient who is Equipped, Engaged, Empowered, and Enabled, whether or not they’re online. In 2011, after several surgeries and chemo regimens, Jay was running out of options. Friends told him about genomic sequencing and helped him research clinical trials. The science fiction community crowdsourced the funding to sequence and analyze Jay’s personal and cancer genomes. Jay shared his data with NIH researchers for his immunotherapy trial, and with Harvard’s open-source Personal Genome Project. http://www.youcaring.com/medical-fundraiser/sequence-a-science-fiction-writer/38705 |
| 4 | My journey-Diagnosis | Like Jay, I’ve pursued cutting-edge scientific research in hopes of living longer with metastatic cancer. I was diagnosed with Stage 3a non-small cell lung cancer in May 2011. I never smoked anything – except a salmon. |
| 5 | My Journey-Progression 1 | After a month’s delay to treat pneumonia, I had concurrent chemo and radiation. My primary tumor and lymph nodes all responded. Two months later, a PET scan found a new hotspot on my collarbone. A biopsy confirmed my cancer had progressed. Since I had severe radiation pneumonitis, my oncologist recommended a break from treatment. In the next three months, I grew a 3-inch mass on my collarbone. |
| 6 | My Journey-Progression 2 | I had more chemo, followed by more radiation. A new scan showed all the known tumors were gone or dead. BUT … I had two new tumors in my other lung. I now had metastatic lung cancer. Whenever I stopped treatment, I had a new tumor within two months. My oncologist told me I would be on chemo for the rest of my life. |
| 7 | My journey-Patient as Participant | However, I wasn’t just a recipient of care. The information I learned in the Inspire online lung cancer community enabled me to become an interactive participant. From other epatients, I learned to ask for my data, including radiology and pathology reports. I also learned more extensive molecular testing was available at other facilities, and arranged to have my slides sent to the University of Colorado Hospital for a 10-oncogene panel. Unfortunately, all tests were negative. |
| 8 | My Journey-ROS1 & Trial | Here’s where the tone of my story changes. An online patient told me I fit the profile of patients who had the ROS1 translocation–relatively young, adenocarcinoma, neversmoker, triple negative for the most common mutations. He sent me the journal article of early trial results. After my second progression, I contacted University of Colorado again, and learned they had recently developed a ROS1 test. I gave permission to use my remaining slides. When I learned my cancer was ROS1 positive, I enrolled in the crizotinib trial in Colorado. |
| 9 | My journey-NED | Thanks to precision medicine and the online lung cancer community, I’ve had No Evidence of Disease for over two years. I’m not cured, but life is relatively normal for now–if you ignore the scanxiety every 8 weeks. I chose to enroll in a trial for treatment in hopes of better option than chemo forever. |
| 10 | Smart Patient LC Trials Chart | Epatients are very interested in the treatment options available in precision medicine trials, but sometimes we have trouble finding the right ones. New trial finders–like this format created with input from epatients–can help patients find the right treatment at the right time.http://www.smartpatients.com/lung-cancer/trials |
| 11 | Purpose of Clinical Trial | For clinicians, researchers, pharmaceutical firms, and industry, clinical trials are scientific experiments. For epatients, clinical trials are treatment. Clinical trials are hope. By collaborating with epatients early in the design process, clinical trials not only can recruit more patients–they also move cancer research forward in ways that are meaningful to patients. Here are some examples. |
| 12 | Life Raft Group | One of the earliest examples of patient involvement in clinical trial design comes from the Life Raft Group. In the year 2000, gastrointestinal stromal tumor patients involved in the early Gleevec trials began sharing their experiences online in ACOR. Now Life Raft Group has the largest patient-generated clinical database in the world, and is driving research on GIST genome sequencing and drug screening. http://liferaftgroup.org/ |
| 13 | LMS Direct Research Foundation | Another example of patient-driven research is the Leiomyosarcoma Direct Research Foundation. LMS is very rare–only 4 people in 1 million have it. In 2004, over 800 of those patients were members of an ACOR online support group. One group member read a journal article about a GIST molecular study, and emailed the researcher to ask “What would you need to study LMS?” The answer was “tissue samples” Patients recruited 500 donors from the online group, collected slides from clinics, deidentified them, and gave them to the researcher. The Stanford lab has since identified several molecular subtypes of LMS as well as potential drug targets, and published nine journal articles in its first four years. Key elements of this successful research collaboration were a motivated online patient network and a researcher who listened to those patients and trusted them as collaborators. http://www.lmsdr.org/stanfordu.php |
| 14 | TLS protocol crowdsourcing | Technology is providing new ways to incorporate the patient voice. In December 2012, the FDA cleared an Investigational New Drug Application (IND) for a multiple sclerosis therapy. What’s remarkable is that the clinical trial protocol was the first ever developed with the aid of global crowdsourcing. That helped define primary and secondary endpoints, inclusion/exclusion criteria, and remote monitoring strategies for tracking patients. http://dev.transparencyls.com/ |
| 15 | ALCMI Young Lung Study 1 | Patient networks and online technologies are also driving research for the most deadly cancer: lung cancer. Currently 3-6 thousand newly-diagnosed lung cancer patients in the USA are under the age of 40, typically athletic never smokers. The patient-founded Addario Lung Cancer Medical Institute designed a study of the somatic and germline mutations that might be driving the cancer in these young patients. The study is unique in that it allows patients to enroll either at a study site or online. It also provides genomic profiling data and treatment recommendations to patients as well as physicians. |
| 16 | ALCMI Young Lung Study 2 | Because this trial was created in response to patient-identified needs and included the patient voice in all phases of trial development, it accrued 30 patients in the first two weeks. |
| 17 | Petition to FDA | Patients, clinicians, and researchers can also collaborate on regulatory issues that impact clinical trials. While working with a laboratory director at the University of Colorado, Dr. Dara Aisner, I realized that patients like me who had a genomic cancer variation might be unable to access essential testing under the FDA’s proposed regulations for laboratory developed tests. By collaborating with medical professionals, I was able to help lung cancer advocacy groups submit comments to the FDA, and draft an online petition that collected over 700 signatures in less than three days. You can still sign the petition, by the way. https://www.change.org/p/protect-patient-access-to-precision-medicine-tell-fda-to-withdraw-proposed-ldt-regulations |
| 18 | CTTI | The Clinical Trials Transformation Initiative, which seeks to increase the quality and efficiency of clinical trials, recognizes the patient voice must be included when defining the precision medicine landscape.http://www.ctti-clinicaltrials.org/home |
| 19 | Where to Find Epatients | If you’re interested in finding epatients for collaboration, there are many places you can look for them. Here’s where they may be hiding.
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| 20 | Obama Quote | When President Obama announced the Precision Medicine Initiative, he said:“Patient advocates are not going to be on the sidelines. It’s not going to be an afterthought. They’re going to help us build this initiative from the ground up.” He recognized the importance of including patient voices early in the design process. To be successful in the age of precision medicine, oncology researchers must collaborate with patients. |
| 21 | Thank You | I hope I’ve encouraged further collaboration between cancer epatients, researchers, and industry. It will create faster paths to cancer cures. Thank you for inviting me to share an epatient perspective at this symposium. |
Life as I interpret it 