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Cancer-Related Crowdsourcing and Crowdfunding Move beyond the Basics—with Many Active Projects Ongoing in Myeloma

Butcher, Lola

doi: 10.1097/01.COT.0000466395.25945.b1
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Crowdsourcing and its financial corollary, crowdfunding, are gaining steam in oncology as patients, physicians, and scientists learn from—and inspire—one another.

For example, Mike Thompson, MD, PhD (@mtmdphd), a hematologist/oncologist at Aurora Health Care in Milwaukee, says he is glad to see social media brought to bear on big challenges, such as funding for research, recruiting patients to participate in clinical trials, and sharing new information much more quickly than was possible in the past.

“I'm not really interested in trying to convince people to go on social media—I want to get beyond Social Media 101 and get people to use it in significant ways,” he said.

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Bringing the Crowd to Research

Thompson is one of several hematologists/oncologists supporting the Myeloma Crowd Research Initiative (MCRI), a patient-led effort with a big goal: to find and fund a cure for multiple myeloma (see below).

He serves, along with myeloma survivor Lizzy Smith, on the MCRI Communications Advisory Board, using Twitter and other social media to promote MCRI's work to clinicians, patients, and others.

MCRI is a project of Myeloma Crowd (www.myelomacrowd.org), a website started by myeloma survivor Jenny Ahlstrom (@AhlstromJenny). She started the website to be a collection of resources for myeloma patients and their family members and to archive her online Myeloma Crowd Radio interviews about myeloma research. “The goal of the show is to help patients understand the personal relevance of open myeloma clinical trials,” she said. Recordings and transcripts of each episode are available on the site.

“To date, I've done 46 interviews with top myeloma specialists in the world,” she said. “I'm thrilled when my myeloma friends say they are interested in participating in a trial after they've listened to the show, because we need to increase the dismal three to five percent participation rate to move research forward at a faster pace.”

Over time, Ahlstrom's goal has grown, and she is now using social media to create an opportunity for patients to be actively engaged with research: “It's tempting for patients to sit back and hope and pray some smart researcher somewhere develops a cure. This strategy is okay if we are comfortable with the current pace of research, but many myeloma patients don't have the luxury of a 10- to 15-year time-to-clinic window.”

Ahlstrom is not much for waiting. She does not think patients should passively wait for a cure—or that researchers should passively wait for government or foundation funding for their work. So she invited several myeloma survivors-turned-patient-advocates to help her create a crowdsourcing research program and a patient-led funding initiative.

The group recruited prominent myeloma researchers to serve on its Scientific Advisory Board.

“We asked ‘What is the most important aspect that is not being addressed today?’ They unanimously agreed that high-risk myeloma needed the most attention because current therapies don't work well for those patients,” she said.

MCRI's initial call for letters of intent drew 36 responses, and the Scientific Advisory Board invited 10 of the investigators to submit full proposals. Those researchers have been invited to discuss their ideas on the Myeloma Crowd Radio Show, where patients and advocates can call in to ask questions.

The Scientific Advisory Board and Patient Advisory Board will work together to determine how many—and which—projects to fund.

“Jenny is very smart and her husband is very experienced in the world of venture capital, and they are not afraid of trying things that may not be perfect the first time,” Thompson said. “This is the first of an iterative attempt at how to do this.”

Myeloma Crowd's approach is novel because it is patient-driven. But others are recognizing that crowdsourcing has an important role in research. For example, Matthew Galsky, MD, Director of Genitourinary Medical Oncology at Tisch Cancer Institute at Mount Sinai School of Medicine in New York, used crowdsourcing to help design a clinical trial to evaluate the use of metformin in men with rising prostate-specific antigen after localized treatment for prostate cancer. (OT 3/25/14 and 12/25/14 issues)

Galsky, the principal investigator, used the crowdsourcing platform Protocol Builder (www.protocolbuilderpro.com) to solicit input into the trial design. He received responses from 43 physicians and 33 patients.

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Crowdfunding Research

Meanwhile, crowdfunding—the use of crowdsourcing to raise money for specific tasks—is making its way to scientific research.

Jessica Chubak, PhD, MBHL, an associate investigator at Group Health Research Institute in Seattle, raised $4,000 through a crowdfunding campaign on Experiment.com for a project involving animal visits for children with cancer (OT 3/10/15 issue). Since its inception in 2012, more than 160 campaigns have been launched on the site, most of which are seeking relatively small amounts of funding.

MIKE THOMPSON, MD, PHD

MIKE THOMPSON, MD, PHD

When MCRI launches its crowdfunding campaign to support its winning research proposals this summer, Ahlstrom intends to use several strategies to raise money. Corporate sponsors will be engaged, she said, and the MCRI team also expects that patients and their families will seize a new type of opportunity.

After all, most patients who have a cancer diagnosis have a community of people who are looking for a way to help, Ahlstrom said. “When you are newly diagnosed, friends and family want to help and will bring meals, etc., but they don't really know what they can do to extend your life. Wouldn't it be amazing to know that if you have a certain type of high-risk myeloma and there is not an existing cure for you, that you have the capacity to rally your community around you to help find a cure for you personally? That is a remarkable way to give your network some specific ways they can help that will make a meaningful difference in your outcomes. “

That strategy will only be successful, though, if the research project resonates with patients, which is why crowdsourcing input into the selection process is key.

“When you have an educated scientific community and an educated patient community join together—and have the patient community as a whole weigh in—to say ‘These are the top two ideas that look the most promising and offer the fastest time to the clinic,’ that is a more powerful message than ‘Researcher A is studying this and Researcher B is studying that,’” she said.

“It has to be a very personal message and a very exciting message. So we have to be careful with what we choose and how it's presented back to the community.”

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Better Together

Ahlstrom said she wants hematology/oncology clinicians—and the patients they treat—to recognize and appreciate patients as key stakeholders in research. She understands, she says, that physicians may be reluctant to “bother” patients who are focused on their own diagnosis and treatment. “But for me personally, it has been emotionally healing to say, ‘I can make a difference in my own outcome,’” she said. “That is a very energizing message for patients.”

JENNY AHLSTROM

JENNY AHLSTROM

Patients often see research as the exclusive purview of scientists and nothing that they can affect or expect to benefit from in the foreseeable future.

“Patients assume that the medical community doesn't need their support,” she said. “I think the message from the medical community should be that together, we can make a difference faster than we can alone.”

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Myeloma Crowd Research Initiative

The patient-powered Myeloma Crowd Research Initiative (www.myelomacrowd.org/mcri) intends to devise and fund translational research in two areas:

  • Potential cures for high-risk myeloma genetic features including genetic features (del 17p13, 4;14, 14;16, and 14;20); and
  • Potential cures for aggressive features in relapsed/refractory myeloma patients.

Its first call for letters of intent earlier this year generated 36 responses from across the United States and institutions in Canada, Germany, Japan, France, Spain, Australia, and Greece. The top 10 candidates, as chosen by the Scientific Advisory Board, will submit full proposals in June. One or more proposals will be chosen for funding, and a crowdfunding campaign will begin this summer.

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MCRI Patient Advisory Board

The board includes five myeloma survivors who have become patient advocates:

  • Jenny Ahlstrom (@AhlstromJenny), Founder, CrowdCare Foundation (@crowdcareorg), Myeloma Crowd (@myelomacrowd), and Myeloma Crowd Radio;
  • Pat Killingsworth (@HelpWithMyeloma), www.multiplemyelomablog.com;
  • Gary Peterson (@grpetersen1), www.myelomasurvival.com;
  • Jack Aiello (@JackMAiello); and
  • Cynthia Chmielewski, @MyelomaTeacher.
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MCRI Scientific Advisory Board

  • Guido Tricot, MD, PhD, University of Iowa;
  • Rafael Fonseca, MD (@Rfonsi1), Mayo Clinic-Scottsdale;
  • Irene Ghobrial, MD, PhD (@IreneGhobrial), Dana-Farber Cancer Institute;
  • Noopur Raje, MD, PhD, Massachusetts General Hospital;
  • Robert Orlowski, MD, PhD (@Myeloma_Doc), University of Texas MD Anderson Cancer Center; and
  • C. Ola Landgren, MD, PhD (@DrOlaLandgren), Memorial Sloan Kettering Cancer Center.
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ASCO Offers Crowdsourced Education

The American Society of Clinical Oncology has teamed with two other professional organizations to create an online, user-driven resource to help oncologists learn about tumor molecular profiling tests and studies.

“For the majority of oncologists who do not practice in academic medical centers and who don't have access to the expertise of molecular oncology tumor boards, how do they learn how to interpret these complicated tests?” said ASCO Chief Medical Officer Richard Schilsky, MD, FACP, FASCO (@rschilsky). To address that challenge, ASCO earlier this year joined with the College of American Pathologists and the Association for Molecular Pathology to launch the Molecular Oncology Tumor Board series.

The board discussions can be accessed for free on ASCO Connection at https://connection.asco.org/discussion?tid=201, after first logging in with an ASCO.org account.

The tumor board series is not designed to develop specific treatment recommendations, Schilsky said. Rather, the goal is to provide education for oncologists through online discussion of representative cases. A new case involving genetics or genomics in the treatment of cancer is presented every month. The “board meetings” are asynchronous, meaning that oncologists can read a case and offer their comments and questions at their own convenience during the two-week period that the discussion continues.

“We wanted to try to engage oncologists and pathologists by using this crowd-sourced approach,” he said. “We invite anyone who is interested to comment on the case and get a conversation going so that everybody can benefit from each person's insights and interpretation of the case.”

Figure

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Expert consultants—one pathologist and one medical oncologist—facilitate the online discussions and wrap up with their own interpretations of the information available.

In February, for example, Jamie Chaft, MD, a lung cancer specialist at Memorial Sloan Kettering Cancer Center, and Laura Tafe, MD, a pathologist at Geisel School of Medicine at Dartmouth, presented the case of a 40-year-old never-smoker with lung cancer and liver metastases. A variety of clinical information, including images, was provided, and Chaft and Tafe started the discussion with three questions:

  • What type of molecular testing would you request?
  • Would you await the results of molecular diagnostic studies or initiate therapy promptly?
  • What systemic therapy would you offer?

The initial cases are representative of real-world cases, but they are not actual patient cases, Schilsky noted. “Our goal is to eventually have oncology and pathology professionals submit interesting and complex cases, and then we'll have an internal process to select cases that will actually appear in the tumor board series,” although the board will not become a mechanism to offer treatment recommendations.

He said that early responses to the series makes him think that oncologists like the crowdsourcing concept: “There were something like 11,000 views of the first case, which we thought was a terrific level of engagement right out of the box,” he said. “More importantly, I looked at the discourse that was taking place, and it was really excellent. People were asking good questions, making good comments, and posting links to journal articles to support their point of view.”

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Putting Social Media to Work

Mike Thompson, MD, PhD, has identified several ways—in addition to crowdsourcing and crowdfunding—that social media is making a difference in oncology. In a chapter of the American Society of Clinical Oncology 2015 Educational Book to be released in conjunction with the Annual Meeting, he highlights the following:

  • Increasing the signal-to-noise ratio: Information overload presents a challenge for many physicians, particularly as social media allows new information to be shared more quickly and more broadly. The use of hashtags is an effective way for social media users to organize their conversations and scroll quickly through posts and pertinent information about a particular meeting or topic.
  • Education networks: Topic-specific Twitter discussion groups such as #mmsm (multiple myeloma social media) and #bcsm (breast cancer social media) and Facebook groups such as “Asymptomatic ‘Smoldering’ Multiple Myeloma ‘aka’-SMM—Information Exchange” (http://on.fb.me/1CTDEkP) allow clinicians, patients, and caregivers to share information on that topic. “Many patients and advocates are highly educated and highly informed and can help drive public perspective and clinical trial accrual,” Thompson said.
  • Collaboration: Although patients can share personal health information online through mainstream social media, it is inappropriate for clinicians to do so in a public forum. However, online discussion forums that comply with HIPAA rules are emerging. Doximity, a professional networking site for physicians, allows authenticated users to hold such discussions, and MedTing, an online collaborative tool, is used by Best Doctors. “This reveals likely untapped potential to extend multidisciplinary conferences,” Thompson said.
Copyright © 2015 Wolters Kluwer Health, Inc. All rights reserved.
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