Innovation Isolationism: Public-Private Collaboration in Patient-Centered Cancer Care
Note: This is part III of the series, “Improving Patient-Centric Measurement in Value-Based Care.”
Remember “all that stuff” above: The litany of practical and disease-specific considerations that go into making a care plan fit into patients’ lives? A brief recap:
“Beyond the clinical components of managing a particular disease, care plans for any particular patient require contextual grounding in a very practical sense. Cancer patients, for example, are more likely than diabetics to travel to large treatment centers like MD Anderson or Dana Farber for their care. This raises the need for better data sharing, more portability, and the flexibility for numerous clinical experts to co-author and periodically update different parts of the care plan.
Moreover, different diseases (cancer in particular) come with the need for specific education, instructions, goal setting, and personalized support, all of which tend to evolve over time in a way that patients (and their care team) can understand and keep up with.”
The good news is that this is the stuff with which industry, not government, is uniquely suited to drive the next phase of progress.
Since Dr. Feeley leads MD Anderson’s innovation center, let’s start by taking a look at what they’ve been up to. Even just a cursory scan of their activity in the last few months reveals numerous efforts around value-based oncology models with a strong patient-centric engagement component:
- A study found that patients using a digital platform by HealthLoop showed higher levels of education, preparedness, and engagement in their treatment decisions.
- A project to test a 1-year bundled payment model for head and neck cancer includes 28 PRO measures that are administered through an EHR/patient portal, and covers a window of over two years in patients’ lives.
- A clinical trial in partnership with Vida seeks to provide: “monitoring, guidance, accountability and social support in between doctor visits to help them manage their conditions and achieve lasting behavior change.” Vida’s platform combines mobile coaching with evidence-based clinical programs, devices, and data collection.
- A framework “to rapid-develop, at an accelerated pace, comprehensive disease-specific outcome measure sets, including provider-generated outcomes and PROMs, that could be integrated with electronic health records (EHRs) and incorporated into clinical practice.”
- An inventory of multi-symptom PRO measures with additional clusters of metrics specific to patients being treated for more than a dozen types of cancer.
This is far from an exhaustive list — as might be expected of one of the world’s leading cancer treatment centers, MD Anderson has dozens of research initiatives around some application of PRO, as well as many disease-specific measure development efforts. It’s highly likely that similar lists will be found at cancer treatment centers like Memorial Sloan Kettering, Dana Farber, Fred Hutchinson, and so on.
While the philosophy of letting a thousand flowers bloom sounds great, in practice it amounts to a sort of industry isolationism, as opposed to the level of leadership that numerous groups (IOM, NQF) put into developing the OCM’s framework.
Many of MD Anderson’s initiatives appear distributed across numerous silos of different researchers, pilot projects, and departmental efforts. Some efforts involve working with competing digital health startups. For example, MD Anderson did a small-scale engagement study with Healthloop — do they know, or care, that Healthloop has also deployed a collaborative cancer care planning tool commercially, with Memorial Sloan Kettering in New York? Might this little company know a thing or two that MD Anderson could benefit from, too?
And despite their work with those mobile health startups, MD Anderson persists in their use of EHR-tethered surveys in their innovative payment pilot with United Healthcare, instead of patient-friendly tools available inside of their own walls.
It should be noted, however, that new methods of health data exchange, such as HL7 FHIR and JSON, have made interoperability between patient-facing apps and provider-facing EHRs possible. This type of patient-EHR interaction would have been close to impossible as recently as 2015.
If we zoom out, there are an expanding array of new measure sets being issued by consulting firms, a cadre of federal organizations and independent associations, and other groups. Some agencies like ICHOM take an open-source approach, but private sector institutions treat their work on patient outcomes measurement as proprietary.
Moreover, there’s little evidence of collaboration with the outpatient segment of cancer care providers, such as involvement in the American Society of Clinical Oncology’s (ASCO) data-sharing initiative, CancerLinQ. In cancer, including “the other half” of the care continuum becomes particularly important for post-treatment survivorship, re-integration into primary care, mental health care, social services, and so on. It remains true in healthcare, as in many other industries, large organizations who embrace a brand-first mentality are also succumbing to siloed thinking.
Conclusion: How healthcare can grab the baton
The federal government has been hard at work over the last several years, standardizing a new wave of measurement to help define value-based care models — in and beyond cancer care. While we’ve undoubtedly made substantial progress in just a few years, there is a lot of work ahead, from measure selection and development, to field-testing and implementation, to technological integrations and product management, and so on and so forth.
Yet, as soon as these measures are deployed in the field in the form of value-based care programs that are funded by public and even some commercial payers, it will be up to the private sector to grab this baton and run with it. It is at this stage of the race that the bigger challenge comes into view: How can industry turn one-off, scientifically validated instruments into comprehensive real-world solutions that generate value for patients, doctors, and system administrators?
- Provider systems can do a better job of streamlining their approach to selecting startups and technology partners. Is it wild to imagine one or two qualified technology partners operating the majority of an institution’s research pilots? Would that make it easier to take findings from those pilots and introduce them into clinical practice more quickly?
- Perhaps this could be a leadership opportunity for the litany of innovation centers that have sprung up around the nation. Issuing RFPs, running hackathons, or reverse pitch events to find qualified help, and rolling up their sleeves to turn qualified companies into strategic partners (perhaps in exchange for equity), rather than disposable, replaceable, temporary pilots.
- Payers play a key role in continuing to work with delivery systems to develop innovative models and measures. One example is the bundled payment pilot described above, which was a partnership between MD Anderson and UHC. Payers can also do a better job of making it easy for startups to find and apply to be a part of these opportunities — an easy example is finding proven startup partners (e.g., DatStat, RoundingWell) to come in and deploy mobile data capture tools.
- Startups innovating in this space should set realistic expectations about working with large medical systems on clinical research pilots. While a small pilot may provide great opportunities for everything from field testing to marketing, these are typically unlikely to result in a scaled up enterprise deployment. Startups (and investors) should plan and deploy resources accordingly.
- Traditional health IT vendors have their work cut out for them as the foundational EHR systems in place across most of the country are figuring out how best to handle the new wave of patient-centric measures. Validated questionnaires like PROMIS are already available within many existing EHRs, but these still tend to lack mobile-friendly design, workflow-friendly integration, and importantly, patient-facing summaries. Without a modern integration platform in place, it is untenable for any EHR to wrangle the numerous data standards and proprietary architectures, particularly when you add in the non-traditional realm of wearables, behavioral data, and emerging survey tools.
Patchwise Labs is a creative strategy firm focused on making healthcare better for the people who need its help.
(This paper originally appeared at Corepoint Health)
