Cancer Research Has a Data Crisis: Let’s Face It and Fix It

By Carla BalchCEO, Transmed Systems.

Carla Balch
Carla Balch

Cancer research appears to be at an inflection point as we swing toward immunotherapy. It’s a time of great promise for patients, physicians and researchers, but also of great frustration. Too often patients are unable to access treatment options that could save their lives.

In the United States, more than 600,000 people are expected to die of cancer this year, according to the National Cancer Institute. At the current rate, a third of people diagnosed with cancer today will die within five years driving a deep sense of urgency for those in the clinical trials field.

Breakthroughs in biotech and personalized medicine could change these dire statistics, but it can’t happen soon enough for the 1.7 million Americans who will be diagnosed with cancer this year, and the millions more already living with it.

Data has the potential to make cancer research and treatment far more effective and efficient. That’s why institutions across the spectrum – from public hospitals to private practices and research facilities – have become far more sophisticated in collecting data.

The next great healthcare challenge

But making the structural changes needed to put this data to work is another matter. Our next great challenge as a healthcare community is how to deploy all of this information to improve clinical care, and how to get organizations big and small to communicate in a way that opens the full spectrum of treatment options to all patients.

This means connecting pharmaceutical companies and research organizations to the physicians and facilities that are treating patients. Right now, these two worlds exist in separate spheres – they each maintain massive data silos that have no way of continuously communicating with each other.

Researchers are left to rely on a few trusted providers – mainly major research hospitals – for their trials, and it leaves physicians elsewhere struggling to find treatment options when the list of more traditional options has been exhausted. It leaves millions of patients missing out on opportunities to access potentially life-saving care.

We have the technology to bridge this divide – it’s now a question of committing to creating a shared and always HIPAA-compliant database that allows researchers to expand and enhance their search for the right patients on one side, and allows physicians to see a global picture of current trials on the other.

A technology solution – with no major upgrades

The shift to a shared database faces understandable resistance from hospitals and research institutions that have invested millions of dollars and years of work to create their own systems for tracking trials and treating patients. An important part of the solution is developing technology that does not require replacement of these systems, but instead integrates with them so that EMR databases across the world can connect without major upgrades.

This sort of technology has the power to overcome a challenge that lies at the “heart of the cancer clinical trial endeavor,” according to a 2016 study published in the American Society of Clinical Oncology Educational Book. Despite all the recent advances in technology and treatment, the number of adult cancer patients participating in clinical trials remains relatively stagnant at about 1 out of 20 patients.

When more patients are enrolled, the benefits are felt by both the patients involved in the trials, who may have higher survival rates, and the wider patient community, which gets access to treatment options faster because of a more efficient trial process, the study found.

Getting more patients into trials starts with fixing the way we identify eligible patients. As it stands, most electronic searches are both narrow and shallow. Narrow in that they are looking for patients only at a particular institution, and shallow because they don’t go beyond the cancer type.

For researchers, that means running a search on dozens of separate systems to get a sense of how many patients might be available for a trial. Then comes the laborious process of pulling medical records for patients with the right cancer type and manually reviewing their molecular makeup and treatment history to determine whether they qualify for the trial.

It’s time-consuming and costly work that is accepted as part of the process, but it’s a major hurdle to expanding trial participation. And in some cases the treatment window for patients closes because their cancer advances before a trial can begin.

Hospitals may decide in some cases that it’s simply too expensive to run these searches each time they are approached about a trial. And companies doing the research end up spending unnecessary resources opening trials at hospitals only to find out that there are not enough patients to move forward.

A single source of truth

We need more powerful solutions that can scan patients across the care universe – from major research hospitals to community clinics – to find eligible patients and then look deep enough into their records to determine whether they are an actual fit for trials.

We need to improve clinical trial success by building a “single source of truth” for oncologists and researchers, starting with cancer. Software can be integrated on top of existing EMR systems, lab information systems, cancer registries and patient reported outcome systems condensing days of manual records reviews into a relatively simple search query.

For providers, biopharma companies, research sponsors and contract research organizations, it means accelerating the clinical trial process by orders of magnitude. For facilities that have not typically participated in clinical trials, plugging into our database instantly expands treatment options for patients, leveling a healthcare system that is too often imbalanced.

The challenges I’m describing are not new to those on the front lines of cancer research. One of my colleagues recently spoke to a leading cancer researcher who said that efficiently connecting technology systems – is the “hardest problem in healthcare.” Not just in cancer research.

That is why many hospital and pharmaceutical executives are anxiously investing in software and systems to address the issue. But too often the promise of these solutions does not translate into significant increases in efficiency or precision. It’s no secret that our healthcare system is rife with vaporware.

Researchers and physicians should be looking for technology that can be integrated into their systems with minimal cost and upkeep, while giving them maximum access to data from other organizations and networks. In a system currently made up of data silos, we need to start building universal databases that are EMR and other healthcare IT system agnostic.

Even the best-funded organizations can’t afford to rebuild their digital infrastructure. Nor can we as a community afford to have each facility’s data systems operating in isolation. Innovation that brings these systems together will not only solve immediate problems, like a lack of connectivity for cancer research trials. It will lay the foundation for a new set of tools fit for the digital age.

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