Shake Off the Tinsel: Five Innovations in Oncology Care Delivery to Watch in 2019

Robert M. Daly, MD

The start of a new year brings with it the promise of change. With the ongoing national shift from volume-based to value-based reimbursement, health care and oncology care have seen this shift ignite innovation that is leading to care transformation. As the landscape for care delivery shifts it is impacting all stakeholders including providers, payers, and most importantly, patients, and will hopefully lead to improvements in the quality of care.

These are five innovations to look for in 2019 in oncology care delivery that hold promise for positively disrupting the way we practice:

  1. Predictive analytics and artificial intelligence: Health care institutions and practices are just starting to leverage the richness of their electronic health record data to predict risk. These data driven models could have an impact in many different areas of oncology care including antineoplastic treatment decisions, early symptom identification and management, and identifying those at risk for acute care. However, currently these models are in their early stages and there is a need to better understand how these models impact care, including their unintentional consequences on clinician decision making, and how they can best be integrated into clinical practice. In addition, as third parties enter this space, such as Google and others, understanding how this data is monetized and who benefits from it will be essential decisions that institutions and practices will need to make. The ownership of extracting this data and leveraging it for clinical decision making will be a key competitive advantage for institutions and practices.

  2.  Patient-reported outcomes, 2.0: At the ASCO plenary session in 2017, Ethan Basch presented the survival results of his foundational clinical trial evaluating patient self-reporting of symptoms versus standard of care symptom management, demonstrating a five month improvement in overall survival. These results led many across oncology to believe patient reported outcomes should become the standard of care in cancer care delivery. However, there have been much advancement in technology since that plenary session including strides in remote monitoring and mobile applications. We saw this at the recent ASCO with abstracts on activity trackers and emoji scales. In 2019, we will look to see how these advances can be leveraged to elicit patient reported outcomes while decreasing the collection burden on patients, caregivers, and providers. How will these remote monitoring technologies evolve (e.g. monitoring of heart rate, blood pressure, temperature, PO intake in the home), how will our work force evolve to respond to them, and, further, how can this data be stored and interpreted to improve the risk models discussed above.

  3.  Complex treatment pathways: Anyone who has taken care of oncology patients on active treatment understands that when symptoms develop they often come in clusters. These patients often do not just have abdominal pain in isolation but also nausea, emesis, diarrhea, dehydration, and fatigue/malaise. Organizations and the private market have developed guidelines and pathways for management of these symptoms but they are typically designed to address a symptom in isolation and fail to recognize the complexity of co-occurring symptoms. There is a clinical need for innovative analytic strategies to identify these clusters as well as targeted interventions to address them. In this vein, the National Cancer Institute has called for clinical decision support systems that address co-occurrence. In the current environment of the Medicare Access and CHIP Reauthorization Act and the Oncology Care Model where resource utilization is being closely measured and followed, institutions and practices are compelled to bridge this gap in symptom management. In 2019, we will look to see how treatment pathways evolve to better address the complexity of the oncology patient’s symptom profile to lead to targeted supportive interventions that reduce unplanned acute care.


4. Tele-oncology enabling care everywhere: Tele-oncology is a rapidly developing field that has the potential to be a major disruptive force in oncology. The applications are diverse including triaging and managing symptoms at home, delivering rural care, and remote second opinions. As these visits gain in sophistication over the coming year, these applications will continue to evolve. The old model of having patients come to the institution or practice for visits will hopefully give way to a new patient-focused model where more care is delivered to the patient where they are. We have already seen this in other specialties, and payers, including the federal government, are very slowly evolving policies to provide reimbursement for these telemedicine interventions.

5. Platforms for information sharing: Along with these changes in care delivery, there has also been an increase in the complexity of cancer care with the dissemination of immunotherapy across disease types and with treatment decision increasingly based on a tumor’s molecular profile. The traditional method of sharing information via journal articles has not kept up with the need of physicians to have access to this information in real time at the point of care nor does it facilitate the case-based decision making needed by physicians in the clinic. There is a demand for platforms that allow for this immediacy where oncologists can share information and ask questions of their colleagues. We have seen start-ups enter this space, such as TheMednet, and it will be interesting to see how these business models evolve in 2019 and how journals will respond to them.

In this blog, I will be doing a deeper dive into each of these topics over the coming year. Please respond in the comments below if you think I am missing any big innovation trends in 2019.

With Great Doses Come Great Responsibilities

Oncologists must also protect families of cancer patients who are prescribed pain medications.

By Steve Lee, MD

To great fanfare, health services researchers at the September 2018 ASCO Quality Care Symposium announced that opioid deaths in cancer patients are ten times less likely than in the general population.  As part of a ten-year retrospective study, lead author Fumiko Chino MD of the Duke University School of Medicine reported 0.5 to 0.7 opioid deaths per 100,000 cancer patients, compared to 5 to 9 per 100,000 in the general population.  These findings, the authors argued, supported the continued carving out of cancer patients from increasingly stringent opioid prescribing laws.

These conclusions also nicely supported existing ASCO policy initiatives of reducing barriers to appropriate pain therapy and was the subject of coverage by the ASCO Post as well as an ASCO in Action podcast.

But in limiting concern of misuse of opioid misuse to cancer patients themselves, such avenues of inquiry miss the opportunity to reduce harms to caretakers and friends who gain access to harmful substances through proximity to such high doses. 

Opioid diversion has entered the public conversation, most notably with The Conners, ABC's re-reboot of the 90s classic Roseanne, in which the pilot episode portrays the opioid-related death of the fictional matriarch from a friend's supply. Real-world episodes of opioid diversion from cancer and palliative care patients have also been covered by the press including that of a daughter in Washington appropriating hundreds of opioid pills after her hospice-bound father died .

Unfortunately, rigorous study of opioid diversion is lacking, limiting policy change.  Also lacking is a clear causal narrative linking prescribed pharmaceutical opioids to the illicit substances - chiefly fentanyl - responsible for the alarming increase in American deaths reaching 72,000 in 2017. A popular hypothesis attributes the increase in fentanyl-related deaths to prescription drug control pushing users to illicit alternatives. Is caretaker prescription diversion a gateway to illicit opioids - and deaths?  Further research is needed.

Current state and federal interventions have included biologic testing, prescription drug monitoring programs (PDMPs), opioid prescribing limits, patch return, and drug takeback programs.  Few of these initiatives, however, directly address the diversion question of whether each tablet makes it to the appropriate recipient.

One solution may include directly observed therapy (DOT).  Long the domain of public health departments charged with preventing transmission of tuberculosis, innovative agencies have employed telemedicine to maintain compliance with reduced costs.   In the same way, video DOT (VDOT) is a compelling strategy for opioid tracking; in 2017, the National Institute of Drug Abuse (NIDA) funded emocha Mobile Health, a Baltimore-based VDOT start-up, to track adherence to buprenorphine.

Even if successful in trials, general rollout of interventions such as VDOT for high-dose opioid recipients such as cancer patients would surely be resource-intensive.  Important policy questions would include the party responsible for administering VDOT - physician practices are busy enough as is, pharmacy-based programs would undoubtedly add to already high drug costs, and departments of health would require new funding streams.

Ultimately, further innovation and policy are required to reduce diversion of appropriately prescribed drugs, even from legally privileged oncology and palliative care patients.

Preventing and Treating Cancer-Related Sexual Problems: From Guidelines to Practical Workflows

By Leslie R. Schover, PhD

Damage to sexual function affects roughly 60% of those treated for cancer. Sexual problems are usually severe and pervasive, decreasing desire for sex, damaging erections in men or causing genitourinary atrophy in women, and interfering with the ability to experience pleasure and orgasm. Time does not heal these dysfunctions. Medical and psychosocial treatment is typically required. Sexual problems have often ranked high among unmet needs in surveys of cancer survivors and are associated with decreased quality of life. In late 2017, ASCO published a new practice guideline and the National Comprehensive Cancer Network (NCCN) updated their menopause symptom guidelines, both agreeing that potential sexual problems should be brought up during treatment planning and assessed at follow-up. When problems are identified they should be further assessed and treated in multidisciplinary fashion.

Changing practice patterns in oncology settings is notoriously difficult. Recent surveys on patient-professional communication about oncofertility or sexuality agree that fewer than half of cancer patients recall any mention of these topics by their oncologist. Even then, discussions are usually restricted to a very brief warning about treatment side effects during the informed consent. For example, sexual dysfunction is ubiquitous after breast cancer treatment, but a recent mixed-methods study of communication between oncology professionals and women with breast cancer by Dr Jennifer Barsky Reese and colleagues, published in Patient Education and Counseling, found that only 40% of visits included some mention of the topic, initiated by the clinician 70% of the time. Conversations labelled as “in-depth” took place in only 25% of visits and tended to last only a couple of minutes. The likelihood that such brief and superficial counseling will help patients solve a complex sexual problem is slim.

Many cancer centers now have patients complete symptom checklists at each appointment. Some include one or more questions about sexual function. A weakness of this approach is that some patients with sexual problems fail to report them on the checklist. If an item on sexual function is checked, clinicians often skip discussing it out of anxiety, limited knowledge about the topic, or fear that addressing it will derail their clinic schedules. Few oncology professionals are trained to assess and manage cancer-related sexual dysfunction. Discussions about sexual issues are rarely documented in charts. If a problem is identified, referrals for specialty care are the exception rather than the rule.

A minority of large cancer centers have specialty clinics that treat men’s or women’s sexual problems, often including gynecologists, urologists, mental health professionals, advance practitioners, or specialized physical therapists. Although such clinics are a great step forward, only a small minority of patients with sexual problems benefit from them. Barriers include failure by the patient’s primary oncology team to identify a sexual concern and high out-of-pocket costs for these services due to reluctance by private insurers or Medicaid to reimburse them.

To meet the ASCO and NCCN guidelines, a different kind of workflow is needed. Both patients and professionals should be encouraged in internal publicity campaigns with posters, flyers, and videos to bring up the topic of sex and cancer. Someone on the oncology team should take 30 seconds to ask one question during treatment planning and periodically at follow-up, using a normalizing statement to put it into context: “Many patients treated for cancer notice new problems in their sex lives. Would you like help for any question or problem relating to sexuality?”

If the patient wants help, rather than adding unexpected time to a clinic visit or inpatient rounds to assess the situation, an institution should train several sexuality specialists who are available for timely consults to provide a thorough interview assessment and make appropriate referrals for specialty care as needed. Advanced practitioners are ideal since they not only can bill for an assessment visit using evaluation and management codes, but can also conduct a brief examination or order laboratory tests. Other good candidates for such training include oncology social workers, oncology nurse navigators, or mental health professionals. Training is increasingly available at specialty conferences or through comprehensive online programs.

Another step in the workflow is to provide patients with practical self-help interventions. Self-help books tend to be utilized mainly by college-educated women. Currently available books are mainly restricted to breast or prostate cancer. Most contain patient anecdotes but provide little concrete guidance on resolving problems. In contrast, internet-based Web sites or apps can be personalized to the patient’s type of cancer and can provide interactive content that encourages behavior change. The American Cancer Society has the most extensive online resources available for free at Most other internet content is superficial, repetitive, and often full of errors. As a breast cancer survivor commented in one of my intervention studies: “I am tired of being told to wear a camisole, use a lubricant, and get used to my new normal!” Several clinical trials have documented that online interventions can improve sexual function and satisfaction in cancer patients and their partners. Creating and maintaining online interventions is quite expensive, however, and patients are reluctant to pay for online content. Currently, the optimal solution is for hospitals or insurers to license such programs and provide them without charge to their patients.

One final challenge is meeting the needs of patients with low health literacy, language barriers, and/or poor insurance coverage. Nurse navigators could use online educational programs as a resource for more intensive counseling of patients who may have difficulty navigating them alone. When Medicaid or uninsured patients need specialty care, cancer centers may need to provide it at a loss or, if possible, refer them to community clinics.


The author is the founder of Will2Love and acknowledges a conflict of interest.

Advocacy: Building Relationships, Fostering Awareness, and Promoting Change

Heather Hylton, MS, PA-C

In September, ASCO held its 2018 Advocacy Summit on Capitol Hill. More than 100 advocates across 30 states joined forces to speak to Members of Congress and their staff on several key issues:

  • Clinical trials access for Medicaid patients

  • Removing barriers to providing patients with the right therapy at the right time

  • Mitigating administrative burdens for patients and clinicians

  • Robust funding support for the National Institutes of Health and the National Cancer Institute

Why is this work important?

Advocacy is about building relationships, providing the constituent’s perspective on proposed and existing policy, and speaking to the changes that we would like to see. Many organizations, including ASCO, have exceptional policy experts on staff who work diligently to advance legislative priorities and ensure members of these organizations have awareness of key policy issues affecting their patients and their practices.

Where we, as citizen advocates, can have our greatest impact is amplifying this work through focused conversations with our elected officials and their staff on how a particular issue is affecting or could affect their constituents. What resonates most is sharing specific examples—this narrative helps make an issue personal and tangible—and something the elected official should care about.

If not you, who?

 Lawmakers are responsible for having knowledge on an extensive range of subject matter areas. In Congress, few Members come from a healthcare background yet they are charged with the great responsibility of making sound decisions when it comes to healthcare-related policy matters.

With this being the case, what better resource could elected officials have than constituents working directly in the trenches of healthcare? There is no surrogate for this kind of expertise.

According to the Congressional Management Foundation, relationships are vital: 62% of congressional staff surveyed felt establishing a relationship with the District or State Director was important while nearly 80% felt advocates should establish a relationship with the legislative assistant who has jurisdiction over a specific issue area. Further, more than 90% of congressional staff surveyed reported that direct constituent interactions, either in the district office back home or in Washington, DC, have significant influence on lawmakers’ decisions. In fact, these direct interactions have been identified as being more influential than any other communications strategy.

The seat at the table

As with any kind of decision-making, we often feel challenged when we are not able to have a seat at the table or opportunity to provide input on a particular issue, especially when those making the decisions are far removed from the matter at hand.

Shirley Chisholm, former Member of Congress who made a presidential bid in 1972, once said, “If they don’t give you a seat at the table, bring a folding chair.” Advocacy work allows each of us to take a seat at the table in some way and serves as a tool to help move forward the change we want to see.

Advocacy work is something we can all do, and no experience in this area is required to have a meaningful impact. ASCO has resources available to assist advocates in preparing for conversations with elected officials and their staff at both the local and national level.

With the 116th Congress starting its work on January 3, 2019, there will be a great need to highlight issues affecting our patients and practices, and every voice will be essential to ensure our patients’ access to high-quality cancer care.

More information on ASCO’s Policy Priorities can be found here.

(L-R):  JOP  DAiS Editor Steve Lee, MD; Manish Shah, MD, FASCO;  JOP  DAiS Editor Heather Hylton, PA-C; Kristina Novick, MD; and Sanjay Goel, MD, are pictured at ASCO’s 2019 Advocacy Summit.

(L-R): JOP DAiS Editor Steve Lee, MD; Manish Shah, MD, FASCO; JOP DAiS Editor Heather Hylton, PA-C; Kristina Novick, MD; and Sanjay Goel, MD, are pictured at ASCO’s 2019 Advocacy Summit.

Online Cancer Communities and You: Four Questions to Ask

Lidia Schapira, MD, FASCO

Dr. Schapira discusses the role online communities can play in the cancer experience and what patients can do to evaluate them.


Most of us turn to the internet whenever we need health-related information. These sources of information can range from scientific research articles published in scholarly journals, to patient information websites that provide medically reviewed content, to blogs where people tell their stories about their cancer experience. People with cancer know that the time they have with their oncologist is limited, so they sometimes turn to online communities for information and support. Connecting with someone who has had a similar cancer experience can be helpful because it provides a personal perspective as well as useful information . Online communities have made building these informal, personal connections much easier.

Online cancer communities are where groups of people with an interest in cancer can communicate through a website, instant messaging, or email. Users can post questions, answer other users’ questions, and contribute to resources in a shared space. Sometimes, people can join a community by just clicking a button or their membership may have to be approved by a group owner or moderator. Individuals may “lurk,” meaning that they read the posts in the community but do not post or interact with other users. Information is typically collected slowly and in small amounts. Multiple participants interact and determine what topics are discussed, which can lead to wide-ranging discussions. This is very different from what happens during an appointment with an oncologist, when large amounts of information are often given all at once by a single clinician or a few professionals working in a team.

 Today, Dr Tanya Gupta and I published an article in the Journal of Oncology Practice called “Online Communities as Sources of Peer Support for People Living with Cancer:  A Review.” Dr Gupta and I are both habitual internet users ourselves and are immersed in the tech-savvy culture of Silicon Valley, so we were curious about the role of social media in the lives of people living with cancer. The question we wanted to answer was quite simple: Are patients driven to the Internet to find information or to connect with others? We thought the answer could help people design new platforms and content for patients and family caregivers. So, we started by tracking the history of use of social media and identified academic, private, and charitable organizations that have made important contributions to the field. Dr Gupta interviewed leaders in each of these groups, including directors of nonprofit advocacy groups and cancer researchers. We also looked at research that has already been published and were disappointed with the results. The very few research studies that we found did not help us to draw sound, evidence-based conclusions. So we decided that it would be useful to write a summary for our colleagues in oncology to help them understand the history of research in this field and to alert them to the large number of online communities that currently exist and form part of the steady information “diet” of our patients. In our published paper, we recommend that oncologists discuss the use of social media openly and often with their patients, so doctors can understand and support their patients’ needs for information and peer support. We are now engaged in designing research to learn more about using social media to communicate messages that have scientific content and ways to harness the power of online communities to provide peer support. Patients and their loved ones will search for online communities for the information and support that they offer. Here are some of the things you should think about when considering joining an online community or starting or contributing to a discussion in an online community:


  • Is the community helpful and supportive? Although different people have different needs when it comes to online communities, there are some elements that all helpful, supportive communities will have. These communities have members who are supportive, informed, and nimble when responding to the concerns of other members. I also recommend that you find a group whose conversation style feels comfortable to you and meets your current needs. Ask yourself if it is a good fit.


  • How old is the community? Some communities are mature, meaning they have hundreds or even thousands of members, and their members may have been posting or reading posts for many years. For some, this broad base of member knowledge can be a great source of support. Other communities are new and don’t have as many active members. Some people may find it exciting to join a new community and to help shape the discussion and atmosphere of the group.


  • Is the community specific to my needs? A patient told me that she had joined several Facebook groups and that she found it helpful to know that many others around the country were getting the same treatment for the same type of cancer she had. Interestingly, she also learned how others were coping with uncomfortable side effects caused by the treatment. The coping methods she had learned had not been suggested or mentioned by members of her cancer-care team. When you look at an online community, consider whether the discussions are relevant to you and your experiences.


  • Is there a medical professional moderating or facilitating the discussions? Some online communities are similar to traditional in-person support groups and a few have medical professionals available. But most online communities do not have an expert available to review the medical information shared. If someone needs more support than the online community can provide, there is usually no trained professional available to offer that support. This is what makes some oncologists worry about online communities. People may receive the wrong information or may share too much personal information. When you look at the information shared in the group, ask yourself, “Is this information reliable and trustworthy?” If you don’t know the answer, ask your doctor.

Finding the right community for you may require effort and some research. There are no matching services for online cancer communities, so you may want to start by asking the advice of the health-care team as well as other patients or friends. Another approach is to begin by joining a community that is curated by professionals, providing a layer of supervision that keeps the conversations safe and supportive. One example is the Cancer Survivors Network, which is operated by the American Cancer Society, where members create a short profile and find others with similar stories with whom they can connect and share information about treatments. Another is the privately funded Smart Patients, which provides information and support from peers in a shared space that is monitored by a team of health-care professionals.


Online Communities for Support

Cancer and Social Media: How Can We Use It to Improve Care?

Social Media 101 for People Diagnosed with Cancer (PDF)

Cancer-Specific Resources



Journal of Oncology Practice: Online Communities as Sources of Peer Support for People Living with Cancer:  A Review





Three Must See Talks From the ASCO Quality Care Symposium

Three Must See Talks From the ASCO Quality Care Symposium

The ASCO Quality Care Symposium occurred this past week in Phoenix, AZ. The scorching Arizona sun shone a bright light on a variety of issues in cancer-care delivery including financial toxicity, care redesign and quality reporting in the age of the Oncology Care Model and MACRA, and patient engagement and patient-centered care.

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