Posts by :
Allscripts Vice President of Government Affairs Leigh Burchell and I represented Allscripts and 2bPrecise on January 6 at a select executive roundtable of the healthcare industry’s top leaders, invited by Vice President Joe Biden. We discussed improving patient access to their information, both broadly and within the context of cancer care
Vice President Biden raised some great questions and shared his thoughts about increasing the ability of patients to access and share their clinical information, improving access to data and using genomic information of populations to find trends for optimized treatment. In response to the sometimes passionate conversation during the meeting, we followed up afterwards with recommendations for Vice President Biden and the Cancer Moonshot team:
1. Require information sharing with patients. Some provider organizations see great risk in sharing comprehensive information with their patients, concerned about how uninterpreted results can cause confusion or panic, or worried that patients will leave their care. Work needs to be done on the nomenclature, including dictionaries conversion, such that patients are more equipped to interpret the information, but that should not continue to be a reason to withhold information today. Our technology can exchange any information that a provider wants to populate, including the entirety of the patient’s record at that institution.
2. Address barriers to genomics and precision medicine. Today, genomic information presents potential for precise diagnosis, optimized treatment and predictive aspects to keep us healthy, as well as curing us faster when we are ill. However, we must define genomic standards, promulgate regulations around the sharing and use of genomic information and its consent, and apply policy levers to encourage providers to find ways to pull genomic information into their workflow.
3. Force a baseline exchange standard. We have standards that overlap, covering the same clinical use cases but with a different level of granularity and/or context. For example, problems are coded in SNOMED by clinicians, but billing is based on ICD-10 diagnosis codes. There is no required correlation or harmonization across nomenclatures, and EHRs are allowed to use whichever they prefer. The result is that different systems sometimes struggle to (or even simply cannot) absorb the data from each other.
4. Define a Minimal Data Set for sharing. Standards and requirements must include a time limit and a format, both for transmission and for reception. The current CCDA is significantly too broad and generic; hence, even while everyone is “following the standard” and meeting the letter of the law, the exchanged CCDA still ends up as a flat document on the receiving side, falling short of being useful information. Those new standards must focus on requirements that address how receiving EHRs should consistently pull the transmitted information into their systems.
5. Closed loop of information exchange.We need to force a closed loop, which includes the patient as an active participant. This means the industry would seek more than just the transmission of discrete data, but declare success only when the receiving side is successfully using it. Moving to a closed-loop approach would mean that regulations and incentives should be defined based on a provider-patient-referral basis, judging the exchange of meaningful information between all of them.
6. Leading by example. There are many organizations who can serve as robust examples of successful work in the area of information exchange and specifically in the area of patient engagement. We have clients of all sizes, all specialties, all areas of focus, using information exchange in the United States and beyond, including the whole state of Israel at the Ministry of Health level, many health systems and communities tied together as part of ACO efforts.
Leaving the meeting, I was very encouraged by the obvious inspiration shared by everyone who attended to change and improve. Vice President Biden is highly motivated to solve the challenges that stand in the way of efforts to cure cancer, some of which are related to the flow of information.
Announced in January 2016, Cancer Moonshot is the effort he leads to accelerate cancer research and make more therapies available to patients, while also improving early detection and prevention. In fact, after he leaves office, he plans to continue to push and drive these initiatives forward through the Biden Trust, which will be vendor- and provider-agnostic.
What Allscripts can do to advance patient access to data, precision medicine
With open solutions, Allscripts is already helping to enable patient access and care collaboration. 2bPrecise’s EHR-agnostic solution will play a role in the evolution of genomically aware care by injecting ”-omics” and precision medicine information at the point of care and through the support of research efforts.
In bringing these solutions to market, we’re starting practically with early adopters of our clinical-genomic solution, such as work to address specific disease states of hyperlipidemia and diabetes at the National Institutes of Health and behavioral health at Holston Medical Group. They understand the value this technology will bring to their efforts to improve patient care.
We appreciate the opportunity to participate in Vice President Biden’s roundtable and applaud these efforts to foster continued progress in improving patient access to data and precision medicine.
As the industry recognizes the potential of genomic information to revolutionize healthcare delivery, experts describe the many challenges and opportunities related to precision medicine. A recent Health Data Management article, WEDI: EHR support for genomic medicine lacking, reviews highlights of a white paper from the Workgroup for Electronic Data Interchange (WEDI) Genomics Workgroup.
Because our team has years of experience in embedding clinical knowledge in the clinical workflow, and since we are working toward making precision medicine possible at the point of care through our genomic platform 2bPrecise, I wanted to share a few thoughts and reactions here:
1) EHRs don’t lend enough support to genomic medicine
Authors of the white paper contend, “Although improvements to electronic health records (EHRs) have been made, much work remains to optimize their ability to support genomically informed care, and in turn, for genomic information to contribute to improvements in care coordination.”
I agree; we’ve made progress, but we have not achieved the full promise of precision medicine.
A section of the white paper addresses building the technical infrastructure, listing out specific challenges related to data storage, integration and analytics, which are all critical to success. However I’d emphasize the greater challenge lies – not just in the technical aspects – but rather, How will clinicians make sense of this data?
We cannot just solve for the technical and introduce an ocean of data. Our concurrent effort should be to synthesize all of this data into actual relevant knowledge – enabling clinicians to make sense of it at the point of care and deliver only what is important for this clinical context. We must avoid overwhelming the clinicians.
2) Actionable clinical decision support around genomics will have significant clinical benefits
As stated in the WEDI white paper, “An actionable, systematic CDS process around genetic data has the potential to hasten the diagnostic process, accelerate therapeutic and non-therapeutic care planning, and better inform and engage all members responsible/accountable for adherence to such a care plan.”
Our partnership with the National Institutes of Health (NIH) is focused on combining clinical and genomic data to deliver actionable information at the point of care and integrated in the EHR. We are still in the early adoption phase of this relationship, but we anticipate many potential benefits in terms of care optimization and research.
3) The industry should “move aggressively” toward a common standard for genetic information exchange
Here, too, I agree with the white paper authors; standards can help foster data exchange. Coming from my background with the Allscripts dbMotion™ Solution, an interoperability platform deployed in nearly one hundred IDNs, we know that a common language is critical.
But practically speaking, the real clinical world has mixed levels of maturity when it comes to data exchange. In some cases, there are too many standards. In other areas, there are proprietary, non-standard or non-structured types of information. The healthcare industry has invested more than two decades in defining developing and adhering to standards.
So, industry standards are an important step, but it is not realistic to expect that standards alone will ensure compliance or progress.
4) Protect genomic information’s use
There are many aspects of using genomic information that go far beyond the clinical. The white paper explores some moral considerations around data privacy and security. For example, protecting individuals from improper use of genetic information by health insurers and employers.
We must also consider ethical dilemmas as clinicians consider using this information with patients. For example, if genomic data is 90% certain an individual will develop Dementia or Alzheimer’s Disease, at what point should the physician share this information with the patient? Is there a threshold for certainty that we must reach before exposing patients to a diagnosis? Is there a minimal requirement to even be able to act upon such finding? It is a subject worthy of further exploration as precision medicine becomes more mainstream.
The benefits are worth the effort
Integrating genomic information into medicine is a monumental task. But the potential to improve care coordination and healthcare delivery are too great to ignore. Our early work with NIH experts is just the beginning of a journey that will bring us closer to our ultimate goal: improving outcomes for patients, while optimizing payer and provider spending.