Accessing Lung Cancer Experts from Anywhere in the World

Those in search of an expert opinion can gain access through remote second-opinion programs.

Posted: August 14, 2019

People diagnosed with lung cancer do not have to live close to a major cancer center to get a second opinion from one of its experts, thanks to a growing number of remote second-opinion (RSO) programs.

“What is offered in remote second-opinion programs can vary, but the one commonality is that the patient is interacting with a physician without physically being in the same room as them,” explained D. Ross Camidge, MD, PhD, the Joyce Zeff Endowed Chair in Lung Cancer Research at the University of Colorado School of Medicine.

Data on the frequency of patient-driven second opinions in oncology are variable, with a recent review reporting ranges from 1% to 88%. Among the motivations for seeking a second opinion are perceived need for certainty, a lack of trust, dissatisfaction with communication, and/or a need for more personalized information.1

Personalized Expertise
RSOs provide patients with an opportunity for an expert in the disease to review the patient’s medical records, scan their lab results, and consult about the best treatment options, explained Janet Freeman-Daily, a lung cancer patient advocate and survivor.

“As lung cancer gets divided into smaller and smaller subsets by genomic drivers or other characterizations, some patients are realizing that their doctors may not be as familiar with their particular type of lung cancer, or the drugs used to treat it,” Ms. Freeman-Daily said. “With remote second opinions, you get that expert advice without having to travel.”

For example, one of the genomic drivers of lung cancer discovered in recent years is the EML4-ALK fusion gene. ALK gene rearrangements are found in approximately 5% of NSCLCs. Historically, before the modern era of targeted therapy and checkpoint inhibition, the 5-year survival rate of patients with stage IV NSCLC is approximately 1%, with a median survival of approximately 8 months3; however, one recent study showed that patients with stage IV ALK-positive NSCLC given appropriate treatment had a median survival longer than 6 years.4

Dr. Camidge was a researcher on that study and is considered one of the world’s foremost ALK-positive lung cancer experts. The RSO program at University of Colorado launched in December 2011 with the idea that Dr. Camidge could provide remote consults to patients with ALK-positive disease, avoiding the need to travel to Colorado, pay for accommodations, or take time away from work or family.

Since that time, the program has provided more than 300 RSOs to patients in 33 states and 20 countries including Bulgaria, Egypt, New Zealand, Sweden, and Uruguay. But what really sets their program apart is that Dr. Camidge does RSOs by speaking to the person via phone.

“I get to establish a relationship, and the patient can ask questions,” Dr. Camidge said. “A paper [consultation] can provide facts, but part of the reason a lot of people are seeking a second opinion is that they feel something is missing. Sometimes that is expertise, and sometimes it is communication; to correct that, I think phone consultations work better.”

Although Dr. Camidge said that approximately 20% of his RSOs become full-time patients, he feels that in addition to providing expertise, his job to is improve or repair the communication between the patient and their primary oncologist.

“The last line of the written opinion always says to please show [the opinion] to their treating physician to get their thoughts on the matter,” Dr. Camidge explained. “Many times these opinions are just one-offs; I confirm that their oncologist is doing all the right things, and the confidence level of the patients goes up.”

Prior to initiating the RSO process, patients often must complete several forms including medical record release and legal disclaimer forms. Included in the release forms may be statements that address institutional or physician liability, for example, that the physician will not have access to important information that can be obtained from a physical examination and that the absence of this examination may affect the physician’s ability to diagnose a disease.

In some cases, though, a RSO can change the course of a patient’s treatment, according to Russell Kenneth Hales, MD, director of the thoracic oncology multidisciplinary program at the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins.

“We certainly have patients from an outside facility [for whom] our pathologist will find something different and we are able to target a different molecular pathway,” Dr. Hales said.

At Johns Hopkins, the RSO program involves patients sending in their medical records for review and an expert at Johns Hopkins sending back a written recommendation. Although Dr. Hales could not rule out RSOs ever including a phone call, he said that he has never participated in that type of RSO model.

Availability and Access
Other major cancer centers also offer RSO programs. For example, the Dana Farber Cancer Institute’s Online Second Opinion program provides access to its expert oncologists to patients around the country and around the world without traveling to Boston. The program can be accessed via phone or internet, and the entire process is conducted online, including the collection of medical records. After collecting records, patients receive a written response from a physician specifically matched to accommodate the patient’s needs.

The Cleveland Clinic Taussig Cancer Center also offers RSOs from its thoracic oncology department through a program called MyConsult. Patients seeking a second opinion get a written response from one doctor who specializes in the field, as well as one round of written follow-up questions and answers.

“The oncologist in the USA [who provided the second opinion] told us on the phone through a translator (a native-born Italian oncologist) that he thought my wife’s brain MRI showed a possible metastasis instead of just a cyst. Because of this, my wife had successful cyberknife treatment that eliminated the spot and avoided a much more risky treatment option.” –Spouse of a patient with ROS1 NSCLC, Italy

However, remote access to cancer experts at major institutions is by no means standard in the United States. Many major cancer centers, such as those at the Seattle Cancer Care Alliance (Fred Hutchinson Cancer Research Center), The University of Texas MD Anderson Cancer Center, and Fox Chase Cancer Center, do not offer any type of RSO.

Widespread lack of availability is not the only potential barrier to accessing RSO programs, according to Dr. Hales. The fees associated with RSOs are often not covered by insurance, forcing patients to pay out of pocket (see bottom of page). As with all medical costs, fees for RSOs can vary from one institution to the next. The cost of an online second opinion at Dana Farber is $2,000.5 The cost for a remote consult at UCHealth in Colorado starts at $785 but can increase with added services.6

“We are often finding that these sorts of services are more available to ‘connected’ patients who know to ask for them and who can afford to pay for them,” Dr. Hales said. “It is unfortunate because the very population whom this could most help are the patients who are more financially constrained who cannot afford to come see us in person.”

Spreading RSOs
There has been very little downside to launching the RSO program at UCHealth, according to Dr. Camidge, who said he has only ever had one complaint out of 300 patients.

“We live in a rural area of British Columbia, and there are few [patients with ALK mutations] in our entire province. It was such an immense relief finally to talk with a specialist who we knew totally understood NSCLC with the ALK mutation, and could guide us going forward.” –Patient, Canada

Dr. Camidge said many different people have reached out to him to “pick his brain” before launching their own RSO service.

“My advice is that this is a discerning population that does not want textbook answers,” Dr. Camidge said. “They want to know the latest research and the latest trials.”

“[The doctor] and I discussed my prior and current treatments and before the conversation was over, not only did I have some choices regarding treatment options, but felt extremely hopeful and confident in moving forward with my treatment plan.”
–Patient, United States

However, Dr. Hales recommended some caution be advised to patients seeking any second opinion, remote or otherwise.

“Patients can be beguiled into thinking that the recommendation is the outcome, and if there is one thing true of lung cancer, it’s that it is a dynamic process where recommendations are adjusted and adapted to new findings,” Dr. Hales said. “I worry that a patient may think she is getting comprehensive guidance from a tertiary center based on initial recommendations. Lung cancer is not a 787 on autopilot.”

Although he values the role of RSOs, Dr. Hales emphasized that at times, nothing can replace the face-to-face interaction between a physician and the patient, and that physical examinations are a critical part of medical decision making, especially in complex diseases like cancer.

“The future will require these sorts of services to be increasingly available,” Dr. Hales said. “But for now, there are still some practical pieces that must continue to be worked out until we can accept [RSOs] as a widespread standard practice for our patients.” ✦

1. Hillen MA, Medendorp NM, Daams JG, Smets EMA. Patient-driven second opinions in oncology: a systematic review. Oncologist. 2017;22(10):1197-1211.

2. Targeted Therapy Drugs for Non-Small Cell Lung Cancer. American Cancer Society. Accessed January 31, 2019.

3. Lung Cancer Survival Rates by Type and Stage. VeryWellHealth. Accessed January 29, 2019.

4. Pacheco JM, Gao D, Smith D, et al. Natural history and factors associated with overall survival in stage IV ALK rearranged non-small-cell lung cancer. J Thorac Oncol. 2018 Dec 29. [Epub ahead of print].

5. Cost of the Online Second Opinion Program. Dana Farber Cancer Institute. Accessed February 4, 2019.

6. Remote second opinion program. UCHealth. Accessed February 4, 2019.

Insurance Coverage of Remote Second Opinions

The IASLC Lung Cancer News recently reached out to several major U.S. healthcare insurance providers to inquire about the coverage of remote second opinions. A trend emerged: most of those contacted provided a second-opinion service to its members through a partnership company or third-party vendor. Through these programs, patients can access remote second opinions from an expert, but may not be able to select a specific physician.

Cigna offers a second opinion service to patients through its Rare Conditions Care Value (RCCV) Program, according to a company representative. Launched at the beginning of 2019, the program provides members with a plan enrolled in RCCV with free access to second opinion support service through a partnership with PinnacleCare; however, it is unclear from its website what diseases are included in this program.

Highmark—a Blue Cross Blue Shield company—offers a similar program to deliver virtual second opinions for its commercial members. In partnership with Best Doctors, Highmark members can access second opinions for rare diseases and complex cases. After a complete medical record is gathered, it is given to a Best Doctors expert, who are “clinically and academically accomplished, affiliated with a national and global centers of excellence, and elected by their peers to the top five percent of U.S. physicians.” A representative of the company said that “while it does vary some by product line, for many members this is a covered service, with no cost to the member or provider.”

A representative from UnitedHealthcare said that some employers have opted to give their employees access to an individualized health education program offered through 2nd.MD. Members have access to the program at no cost share. According to its website, as part of this program, members can access “personalized consultations with medical experts by video or phone.” The experts are all board-certified specialists who are practicing physicians and have led “at least 20 peer-reviewed studies in their area of specialty.”✦

1. Express Scripts. Reducing the Burden on Patients with Rare Disease. Accessed February 4, 2019.

2. Highmark Partners with Best Doctors. Accessed February 4, 2019.

3. UnitedHealthcare. Second opinion service offers consultations from top specialists. May 10, 2018. Accessed February 14, 2019