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ive rounds of the usual chemotherapy/radiation protocol kept Alan Gross alive through decades of living with lymphoma. The treatments were grueling, but he was living proof that science was giving us ways to live with cancer. Then the disease came roaring back, and doctors told him that their medicine no longer worked. They told him to get his affairs in order.

Every day, thousands of Americans get the end-of-life warning that Alan and his wife, Jane Townsend, heard two years ago. The words are so powerful that they can have a concussive effect, making it hard to hear, to speak, to process information. “Your ability to think clearly and concentrate isn’t there,” Jane told me.

When the news settles in, it’s natural to question the prognosis and recommendations that come with a difficult-to-treat cancer. I know because I am currently helping someone I love deal with a challenging cancer. As someone with a long career in health care, I am better informed than most. I recall every snippet I ever heard about a new drug or experimental treatment and press for information.

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Unfortunately, you can’t always rely on the medical establishment for all the answers. Many cancer clinicians outside of major teaching centers don’t know all of the new science underway in their field. Nor do they have the time to do a comprehensive search for experimental drug trials for their patients.

Alan and Jane, who are friends and colleagues of mine, both worked in science and health care for most of their lives. When Alan ran out of options to treat his lymphoma, Jane knew how to find new ones. She searched a federal website called ClinicalTrials.gov and identified 1,100 trials related to lymphoma, and cut that number down to 288 that most seemed relevant. In a race against time, they read each one and settled on a handful of promising protocols.

With persistence and luck, Alan became the 22nd person to receive therapy based on the modification of his own immune cells. This is known as chimeric antigen receptor T cell therapy, or CAR-T for short. With it, Alan went into remission and today shows no sign of cancer.

Inspiring as it is, Alan’s story illustrates the tragedy of a communication crisis now plaguing oncology. Although ClinicalTrials.gov is supposed to help patients find appropriate treatment trials to join, it delivers information in a way that is difficult for a layperson to interpret. The trials aren’t described in plain language and the listings aren’t delivered in a way that prioritizes the best options. The medical jargon and the overwhelming amount of information are intimidating to people without a scientific or medical background.

Deprived of useable information, many patients die while searching for an experimental treatment that might work for them. At the same time, many clinical trials are canceled before they finish because researchers can’t recruit enough volunteers. Today, 40 percent of drug studies fail to recruit enough patients to proceed, in part because only 3 to 6 percent of people with cancer ever apply to receive drugs in the testing phases. These low numbers can be traced to the information logjam.

Public misunderstanding about drug testing also plays a role in difficulty testing new drugs. Too many patients believe that they may receive a placebo and not the active drug. At least in most of today’s trials testing new cancer treatments, everyone gets the active agent.

Science and medicine are also hampered by a communication breakdown between local hospitals and physicians and the cancer research community. Writing recently in the Harvard Business Review, Kathy Giusti, a pharmaceutical executive who founded the Multiple Myeloma Research Foundation, and Richard Hamermesh, a senior fellow at Harvard Business School, noted that local caregivers — who treat 70 percent of cancer patients — do not collect or share data about patients, treatments, or outcomes. Many forego genetic screening of cancer cells, which deprives their patients, and science, of vital information. At the same time, scientists, institutions, and corporations guard the data they develop to preserve their intellectual and commercial value.

The can-do people who solve their own problems often work to help others. Giusti, who survived her own battle with multiple myeloma, rallied the Multiple Myeloma Research Foundation to conduct a $40 million data collection effort. Unfortunately, in the end it could gather records on just 20 percent of the 100,000 people now undergoing treatment for this form of cancer. Alan Gross and Jane Townsend have begun an effort to teach others how to do the potentially lifesaving legwork that connects patients with clinical trials. However the need is so great, and their resources are so limited, that they haven’t been able to progress much beyond helping people referred by mutual friends and associates.

Advocacy and advice are valuable. But what’s really needed is a concerted effort to overcome the two main factors in the communications logjam. First, we need a culture of collaboration across science and medicine. The goodwill of doctors and scientists persuades me that this culture problem can be solved. Second, we need better technology. That’s coming too. For example, IBM and its partners have a demonstration project that uses its Watson system to answer questions about metastatic breast cancer with up-to-date information expressed in plain language. Intel is developing technology to provide gene sequencing and cutting-edge treatment plans to oncologists and patients within 24 hours of diagnosis. It intends to bring this service online in 2020.

The cancer moonshot program approved by Congress will pour $1.8 billion into new research. Some of this money (the amount hasn’t yet been specified) is supposed to be spent on closing cancer information gaps. Public resources, and leadership, could accelerate the efforts underway in the private sphere at companies like Intel and IBM.

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Just as drug development has been aided with tax dollars to maximize the return on investment for both patients and developers, cancer moonshot money should leverage research on communication to provide the maximum benefit to patients and clinicians as quickly as possible. The money won’t create new therapies, but lives do depend on solving this communication crisis.

A systemic fix waits years in the future. In the meantime, responsibility for bridging the gap falls on physicians and patients and those who love them. This work requires identifying your own priorities and finding your tolerance for risk. These factors should then inform a search for treatments — including experimental ones being tested in clinical trials — and an effort to create a highly informed and supportive medical team. These are the best options available until we bridge the communication gaps and create a workable system for matching patients with state-of-the-art treatments, including clinical trials.

Lynn O’Connor Vos, a former nurse, is CEO Greyhealth Group, a global health care communications advisor.

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  • I can speak from experience in trying to help two family friends navigate CT databases, and I agree with the article. In the cases I’m speaking of, the patients’ respective healthcare providers were not familiar enough with active trials to be able to recommend one so the burden is placed on the patients.

    When the patient tries to find a find a trial online, the search results are very frustrating. For example, an attempted search to find a trial for a patient who has lung cancer that has metastasized to the brain, the search filters are not very helpful (e.g. does the patient select lung or brain?). If you eventually manage to get to a manageable number of trials to review (e.g. 70), the trial title is not useful in helping determine whether the trial is appropriate for the patient. If you click on a trial title, the summary and trial details are also not helpful for the patient to determine whether the trial is suitable for them. Information is not provided in lay terms and there is no mention of the potential benefit to the patient. There is also no indication in lay terms of whether patients may receive placebo, which is a major concern/misconception for many patients eligible for trials.

    Is the intended audience of clinical trial databases oncologists, general healthcare practitioners or patients? Has a stakeholder analysis been done to determine the information needs of the intended audience? If not, then the usefulness of these sites is being seriously limited. In order for these CT database sites to be effective, achieve their mission and help studies meet their recruitment goals, more should be done to ensure that these resources are reaching (or at least accessible to) their intended target audience.

    By insisting on the incorporation of lay summaries outlining potential benefits to patients and improved search filters, the government agencies that fund these CT databases have the power to increase patient recruitment to clinical trials which in turn accelerates the translation of new discoveries from bench to bedside and ultimately result in more effective use of research funds by reducing the number of trials that are closed due to a lack of recruitment.

  • Bailey ID Solutions is a new company that helps with the patient continuum by collecting this type of data, scrubbing it, and sharing it with physicians interested in the data to better patient outcomes. We have also created a network of the best healthcare providers in their fields. How can we help bridge the gap.

    http://www.BaileyIDSolutions.com. – Helping to save lives one biometric print at a time!

  • Amazing information, outstanding article regarding real people’s journey in the healthcare maze.
    Finally, the conversation has been started ! Well done ….

  • Thank you for an exceptional article which highlights some of the challenges patients face in the midst of navigating a cancer diagnosis. There is definitely a gap between patients and doctors. Fortunately, there are private cancer patient advocates that may be hired to bridge that gap. The benefits of hiring a private patient advocate are undeniable. Please see a piece I recently wrote on this topic here: https://www.enlighteningresults.com/blog/2016/12/14/benefits-of-hiring-a-private-cancer-patient-advocate-1.

    The Alliance of Professional Health Advocates, the premier patient advocacy and care management professional organization in the US and Canada, hosts the AdvoConnection Directory. This directory is publicly available, free of charge, and assists people in finding a private, professional advocate that specializes in their areas of need. For more information, please visit: http://advoconnection.com.

  • If only there was a whole profession dedicated to connecting people to information…. you could call them ‘medical librarians’! It could be their job to search for information on behalf of both health care professionals and patients. They would be familiar with medical terminology, with health literacy, with complex communication and how to evaluate information. Physicians could even give their patients ‘information prescriptions’ that would allow them to follow up with a librarian. Oh wait… I think that’s exactly what I do! Sorry if the message sounds a little flippant, but I’m proud of what I and my colleagues can do as medical librarians, and we do get tired of being forgotten or maligned because people really aren’t aware of the full scope of our profession. If you aren’t familiar with how librarians help patients navigate information, or what information resources are available to them, please learn more. Many of us entered this profession because we love to help, and are passionate about how to get the right information into the hands of the right people at the right time. About 14 years ago, when I started my first job, a visibly pregnant woman came up to me at the library. She handed me a small slip of paper with a single word scrawled on it and said “The doctor thinks my baby has this. What is it?” The word was ‘phenylketonuria’. I was glad to help her find a video online that explained it. She was so grateful that I didn’t just shove a pamphlet in her hand, that I was able to spend time to discover what her information needs really were, and truly help her understand the condition better, so that she would be better prepared for her next doctor’s appointment. This is why we do what we do. Today, I am in a university library and spend more time helping future doctors, nurses and physiotherapists find the information they need to do their jobs, but the passion is still there. And I’m always glad to search clinicaltrials.gov to find trials for patients!

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