An OBR Survey: Ownership and Usage of Oncology Treatment and Diagnosis Data

By Bryan Cote

According to an OBR study conducted in January 2013 that could have broader implications for how much access others will have to cancer patient data – and at what price – oncologists overwhelmingly believe that their practices own the data they collect about cancer patients.

OBR’s survey of 155 board certified oncologists and hematologist-oncologists featured responses from general oncologists (31%) and specialists in breast, lung or hematology (46%) (Figure 1). The study sought to uncover oncologist attitudes about diagnosis, treatment, and outcomes data exchange in today’s cancer care marketplace.

Three-quarters of oncologists surveyed view the data they collect as information based on their own personal clinical judgment and decisions despite the fact that they are basing their decisions on a cancer patient’s own clinical history and diagnosis (Figure 2).

“The data doesn’t really belong to the insurer or the patient. I generate that information. I’m responsible for it,” a 65-year old oncologist from Maine told OBR.

Surveyed oncologists believe that their patient encounters require a litany of complex clinical decisions unlike other specialists. An OBR survey of primary care physicians conducted at the same time revealed a different opinion – only 52% of PCPs believe the data collected are theirs.

“Medical decisions for cancer patients are more complex – each decision must be tailored and the data drawn from those decisions are my intellectual property – it’s a history of how I treat, think.”

One-fifth of respondents added that they have treated more specialized cancers (i.e., refractory cancer), which makes the data and their decisions related to treating these complex tumors more valuable.

In the next two years OBR’s study projects that more oncologists will begin to use patient data for more than patient benefit. Nearly half of surveyed oncologists said they will likely seek some type of compensation for the data they generate perhaps through collaboration with other oncology groups, or—as some suggested—through the development of data warehouses whereby groups “pool data” to create leverage and add a revenue stream (Figure 3).

An OBR Survey: Ownership and Usage of Oncology Treatment and Diagnosis Data (cont.)

No Cancer Is the Same

The impetus for wanting to be compensated for data is stemming from concerns about how the growing use of technology and EMRs in healthcare has and will increase access to an oncologist’s treatment decisions, and that vendors may “spin” or “misinterpret” their decisions or change protocols inappropriately (Figure 4).

More than 90% of surveyed oncologists will have an EMR and patient portal within the next 3 years in response largely to the federal government’s IT requirements to ensure healthcare providers are “meaningfully using” technology (Figure 5).

“It’s a mandate – but at the same time data are king and I need it to remain viable in my area – it’s what distinguishes me from the cancer centers here,” said one respondent from a community practice in Southern California.

Respondents fear that those not practicing medicine may access all this technology and interpret a patient’s data and the oncologist’s decisions with cost—not quality—as a driver, and that those evaluating the data “won’t do it right” given the complexity of cancer care and treatment.

For example, a majority of respondents say it is “difficult to capture” the complete clinical picture of a patient from an EMR.

“What if they use the data to change treatment protocols incorrectly – it may be aggregated in the wrong way, which is dangerous,” a Boston-based oncologist wrote, because a drug or regimen may be favored but ultimately may not work for certain tumors.

Part of the issue is perception. According to 15% of respondents said that researchers analyzing data and making policy recommendations “lack medical knowledge” and “are not oncologists” so they don’t have specific experience with a family or patient.

Despite their significant reliance on data collection technology (be it an EMR or a CPOE system], many oncologists are generally unaware that their clinical data are actually sold. Most surveyed have an issue with those who sell their data—particularly if the data are not blinded. But even if it is, oncologists surveyed are generally unaware that when they license an EMR they may have agreed to share data (Figure 6).

An OBR Survey: Ownership and Usage of Oncology Treatment and Diagnosis Data (cont.)

Cancer Patient Data Aggregation via “Pools”

Companies with an interest in oncology data—be it EMR vendors, patient portal vendors, pharmaceutical manufacturers, and even payers—will find that most oncologists today want to be more proactive with their patient data, but until now few have had the time.

“There are benefits to aggregating data but it should be done by oncologists who can properly do it and properly identify patterns,” said a Washington-based oncologist just 3 years out of medical school.

Seventy-six percent (76%) of respondents believe aggregating data is one of the few ways to ultimately draw conclusions and advance cancer treatment decision-making. Aggregating data can “eliminate bias” and either validate or “debunk beliefs about practice treatment patterns, referral patterns” or other oncology trends (Figure 7).

“It’s simply less biased and more statistically relevant if aggregated,” noted a hem-onc from a small group in Connecticut. “It’s important in oncology to create evidence based protocols and aggregated data is one way to get there.”

Twenty-five percent (25%) of respondents admit that aggregating data may do little to influence individual prescribing behavior, “because each cancer patient’s tumor is different”, but over time may have value to them. There are also inherent risks in pooling data that practices say they would have to address, like how to create a system based on best practice and aggregation “when aggregated data creates benchmarks from blending in bad practices.”

Despite these challenges, by pooling data with other practitioners, most surveyed oncologists believe they can accomplish several business objectives in the next 2 to 3 years—build more demand for their data, create leverage with vendors and payers, and establish a more organized and financially beneficial approach to data exchange.

The pooling data trend is similar to the way many oncologists reacted to reimbursement cuts in the wake of the Medicare Modernization Act of 2003, by adding diagnostic imaging to their offerings, or in-office dispensing in 2008 as a way to offset reimbursement cuts and bolster revenue.

Today, 68% of respondents said the impending changes in healthcare, such as the Affordable Care Act and birth of healthcare exchanges, “worry” many who say they are looking for non-traditional revenue streams.

“I think we can benefit by more group partnership – see how we can pull our data together,” according to a partner from a group of eight oncologists in Missouri. “Obamacare has changed how we have to protect our practice.” Others said, “pooling” data may be complicated initially given that community practices compete, but may also become “necessary” to gain leverage with payers. “Even if not successful with a Cigna or United at least we can offset that by selling to others.”

Figure 8 reveals that few practices are compensated for sharing data today, but this will probably change.

Most compensated for sharing data are benefiting indirectly at this point through their practice or organization, including several large regional oncology groups that allow vendors to access their patient data in exchange for research, analysis and ultimately shared savings or revenue returns for achieving higher quality performance.

Several larger groups who have used their EMR and staging data to demonstrate their overall value to health plans have negotiated reimbursement increases in exchange for sharing data. One group in Colorado that considers itself the only group in town, negotiated with a regional Blue plan, sharing data related to readmissions, treatment patterns, and pathway compliance, in exchange for higher administrative fees and potential savings for meeting certain objectives.

“It’s a tiered system – we provide data back to the plan so the more data we share and the more of us who comply with the pathway, the more we save the plan and the more we share in savings.”

The group’s total adjusted savings share in 2012 was $125,000, mostly due to reductions in 30- and 60-day hospital readmits for lung and breast patients.

Overall, few of the practices surveyed (less than one-fifth of large groups and none of the small groups) admit success using data to educate health plans about their value in reducing downstream cancer care costs (Figure 9).

An OBR Survey: Ownership and Usage of Oncology Treatment and Diagnosis Data (cont.)

Several respondent indicated that being able to leverage their EMR for higher payer reimbursement is the holy grail of data collection – that using data to tell a story of clinical success or demonstrate savings or validate that treatment decisions aided the patient is a vital, top priority for their group. 

“It’s our number one goal this year. We are making headway. The plans want this too,” a Florida-based oncologist said. “They don’t understand how to manage these patients so they’re looking to us.”

For oncology vendors and pharmaceutical companies, the biggest finding may the 44% (noted in Figure 8) who aren’t compensated for providing data, but believe they should be in some way. Most of them were also unaware that their treatment decision data are aggregated and sold, though OBR believes that some of these oncologists may be unaware of their practice’s compensation agreements with vendors.

“I collect a ton of data and could spend days and weeks providing it – there should be a value to all this data we collect and distribute,” according to a hem-onc from a four-doctor practice in Iowa.

A majority of respondents said the requests for data are increasing.

“We had a firm last week wanting $205 for reviewing/providing info from 5 patient charts. I don’t have that kind of time without being truly paid.”

A few (about 7% of those surveyed) are responding to these sorts of requests by actually hiring data managers.

“Just hired 1.5 FTEs to focus on handling data requests from any vendor,” said the executive director of a 15-physician oncology group in Texas.

Most of those who want to be compensated are somewhat unsure of the true dollar value of their data. OBR asked how much the data are worth – per patient – and the responses suggest that few, if any, have truly evaluated this and many are uncomfortable benefiting significantly from the data (Figure 10).


Ten percent (10%) would expect between $5,000 and $15,000 for sharing a single patient’s total data, including full history. The exception is one oncologist from a dominant group in Arkansas who valued his data at $1 million for all patients, an indication that he is uncertain about compensation, but also fed up.

“Everyone benefits from my data but me,” he said in a phone interview.

OBR believes the trend in asking or demanding compensation won’t accelerate significantly in the next year, but there’s clearly talk about it; 52% of those who will seek compensation said they have no formal plans this year to address this, but will probably hold an internal meeting to evaluate opportunities.

Aggregation Begets Quality

Financial benefits aside, oncologists also see quality of care value in pooling or aggregating data. About half of respondents think sharing clinical data with health plans could improve quality of care, if data are used to develop evidence based treatment protocols (Figure 11).

Nearly all of those who believe sharing patient data with health plans has quality of care benefits said they have already been involved in pay for outcomes “pilots” with various payers; there’s more skepticism about whether government and drug company access to data will improve quality.

Sharing data with health plans has for some already proven valuable, particularly larger groups; 6 groups who defined themselves as “the only show in town” said they are reimbursed based on a shared savings contract.

“We’ve move to an arrangement based on paying for quality – true collaboration.”

Several said they started exchanging information and building pathways with health plans as a means to improve outcomes.

“Cancer is complex and treatment must be tailored, but the more I know the more apt I am to treat more effectively,” revealed one respondent whose 5-physician oncology practice competes in a major Midwest market with academic centers.

There’s belief that sharing data could at least improve quality of life and perhaps on some small level survival (by weeks or a month or two). There are some (about half) who don’t see a true link yet between data and quality for cancer care; their thought is that government is most interested in cost control and standardization and that even a more open exchange will not ultimately improve quality.

Likewise, the primary perception is that drug manufacturers would not necessarily promote data unless it benefited their product.

“I don’t see very many head-to-head trials. I think there could be value in sharing clinical data with drug companies, as long as they are incented to help the patient – that’s a discussion that needs to happen.”

Key Takeaways

If data pools develop as oncologists suggest, accessing cancer patient data will eventually come at a higher cost, though the patient benefits of data exchange will potentially be far greater.

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