Erika and I recently attended the 2017 American Society of Clinical Oncology (ASCO) meeting in Chicago, aided in part by a patient advocate scholarship offered by ASCO and its Conquer Cancer Foundation.

ASCO is the largest gathering of cancer researchers and clinicians in the world, and it attracts a considerable number of advocates, patients, drug and device companies —   anyone and everyone in “cancer land.”  There are always a huge number of presentations and poster sessions, along with a dizzying array of side meetings, networking events, and coffee and drink meetups generated by the presence of 40,000 people focused on cancer.

It’s been a long time since I was last at ASCO, although Erika has been a regular of late. Many moons ago, I worked for ASCO briefly, and taught a session on using the Internet in the practice of clinical oncology. Many, many moons ago. The following year, I found myself back at the meeting as an attendee, this time finagling my way onto the convention floor before it opened so that I could use the “Internet cafe” to update the clinical trials website I ran for the National Cancer Institute. In the early days, timely news of trial results were hard to come by, and patients and families would often turn to this site and others to follow up on news coverage offering tantalizing hints of “advances in cancer research.”

Those two experiences —  talking to oncologists about how to leverage the new resources of the Web in their practice and, the next year, being overwhelmed by desperate emails from patients asking for information — laid the foundation for my connection with PALTOWN. I spent the next two decades working in the field of online information, building projects often meant to communicate with both researchers and patients. I could never recapture the sense of immediacy and connection those early days provided, before the Web became corporate and ubiquitous. In the late 90s, cancer on the web was a small town, and even then patients and caregivers were often the ones to make the most creative and productive use of the new technology.

When I met Erika in 2016, I felt as though I was coming full circle. What she has built with COLONTOWN is powerful and disruptive, and it is changing how people experience colorectal cancer and how patients access the latest treatment options, just as we had all hoped twenty years ago. Accompanying her to ASCO was fascinating and a bit overwhelming.

In addition to meeting all kinds of people, I attended a number of ASCO sessions, of course. In one, presenters looked at the differential between patient-reported symptoms and adverse events and those reported by providers or traditional AER systems. Both for symptoms and adverse events, patient reporting shows significantly more (and earlier) problems than do the provider/system reporting. Another study demonstrated the impact of this differential by showing significant reduction in impaired quality of life and mortality when using patient reporting as a trigger for alerts and follow-on actions. Similarly, early and more accurate notice of adverse events reduces costs and improves outcomes in clinical trials.

Several sessions I attended documented the benefits of structured social media use by patients — specifically designed Twitter interventions for smoking cessation, for example, or the use of small well-moderated groups for support. Sound familiar? The key takeaway for me here is that researchers are actually working in this field, and presenting data to well-attended sessions full of clinicians and fellow researchers.

I was particularly interested in work being done to address barriers to clinical research using patient participation and social media. Beyond increasing awareness and recruitment, very promising work is being done in projects such as mbcproject.org, which seeks to dramatically increase the availability of tumor samples for researchers through the somewhat obvious expedient of asking the patients themselves for access. The metatstatic breast cancer pilot project got 3600 participants in its first 19 months, largely through Facebook and Twitter mentions by patients.

The sessions I attended at ASCO were tremendously heartening, because they demonstrated the fundamental shift towards hearing, valuing, and incorporating the patient voice in the practice of oncology and the conduct of clinical research. PALTOWN’s vision is to create safe, rich spaces for that voice to flourish, and to empower patients to become leaders in not just their own care, but in the contributions patients can make in the fight against cancer. It has taken a long time – twenty years, to be exact – but we are no longer sneaking onto the convention floor. We are standing on the podium, and the denizens of cancerland are listening.

Nancy

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