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6 Creating a Next-Generation Data Utility: Building Blocks and the Action Agenda
Pages 203-230

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From page 203...
... , presents a CHOP initiative to transform the delivery of pediatric care and children's health through the power of data-driven decision making. Forrest describes CHOP's highly linked data system, which includes genomic, clinical, and environmental data used to support the organizational vision of transforming pediatric care, and discusses issues related to collaboration: developing cross-institutional relationships, providing the patient and family access to information, fostering provider–payer relation 20
From page 204...
... Brian Kelly, executive director of the Health & Sciences Division at Accenture, a global management consulting firm, details some challenges of managing and aggregating multiorganizational data and the associated influence of current privacy regulations on data activities, including practical challenges and the many entrenched and difficult-to-change systems for data aggregation. Guidance is needed on approaches to ensuring individual health data protection, questions of data ownership, on conveying the benefits of providing access to healthcare data through public advocacy initiatives.
From page 205...
... We use electronic health records (EHRs) , but we believe the EHR is just one piece of the health information technology needed for personalized pediatrics.
From page 206...
... NOTE: dbs = database, EMR = electronic medical records, PHR = personal health records. SOURCE: Reprinted with permission from the Children's Hospital of Philadelphia.
From page 207...
... It is not a full PHR, but at least it gives patients the ability to access their own data and input a limited set of information. The full biopsychoenvironmental profile, when fully available and used to improve care, will be a major advance in our ability to better personalize care, predict future health events, and ultimately prevent ill health.
From page 208...
... 20 FIGURE 6-2 The Pediatric Data Trust. SOURCE: Reprinted with permission from the Children's Hospital of Philadelphia.
From page 209...
... Consequently, iTACH has been working with these partners and others to build the case for a national, even global, clinical database that would link the pediatric data trusts of multiple institutions. In the model we are developing, an
From page 210...
... Our partner pediatric institutions are excited about this, and we are exploring ways to make this vision a reality. We know we are going to need better clinical data systems; administrative data from hospital discharge abstracts are not helpful for improving care for children.
From page 211...
... You can put a provider on the electronic health record, but getting the provider to enter accurate and valid data may take many more years. Communication about our intentions and having a dialogue about how to partner personalized pediatrics, particularly with families, is critical; it is something we must do
From page 212...
... TECHNICAL AND OPERATIONAL CHALLENGES Brian Kelly, M.D. Executie Director, Health and Life Sciences Diision, Accenture This paper provides an overview of many of the technical, operational, and organizational challenges faced when attempting to aggregate clinical data from multiple institutions to gain insights on clinical effectiveness or drug/device safety.
From page 213...
... The data aggregated were data critical to patient care, including demographic data, recent lab data, medications, allergies, and past medical conditions. Although we could have also pulled in other data, we elected to concentrate on these datasets because they were seen as core components to delivering clinical care.
From page 214...
... Assume, too, that there is a central node where you are going to aggregate data, and then allow your patients to access PHR data, allow physicians to aggregate EMR data from that, or allow a researcher to look at data analytic tools for secondary use. You will first need to develop some sort of filtering mechanism that pulls only data on people who have agreed to participate in this data sharing.
From page 215...
... Unless, for example, we change the standard notification of privacy practices to say the data can be used if they are deidentified for secondary use in clinical research, we will continue to have a lot of trouble aggregating data among various institutions. Patient approvals are just one issue.
From page 216...
... The only way to aggregate datasets is when the data are totally deidentified, but then when you merge the data, you would not know how many times a particular patient was represented in the mix. So a key question is how we can develop a master patient index function that allows you to index so that you know that these patients are the same.
From page 217...
... What are the incentives and barriers to providing this type of public good? In many cases the benefits from sharing clinical data and better use of clinical data are shared by everyone.
From page 218...
... The second incentive problem is the lack of bureaucratic incentives to share datasets or for agencies to allow datasets under their purview to be shared. Imagine what we could do, for instance, if we could just merge some of our Medicare data, which are pretty significant, with other federal data.
From page 219...
... Although companies do have some incentives to reduce relative costs, many of the public good issues we are talking about do not provide any gain for an insurance company itself. For the insurance industry as a whole, moreover, there is a perverse disincentive at play; for example, if cancer is cured through use of shared administrative or clinical data, insurance payments for the industry as a whole might be reduced.
From page 220...
... As another example, he or she could ask for common standards and protocols to be developed for data sharing. As it now stands, often every time one wants to share data using some new dataset, the process requires running the gauntlet of a whole bureaucratic layer of decision making -- including the confidentiality officer, typically a lawyer, who has every incentive to say "no." Changing incentives within the bureaucracy often has to come from the top.
From page 221...
... Workshop discussions included perspectives on the current and developing uses of healthcare data for insight, and presenters addressed opportunities to evaluate policies impacting the public good, security, and privacy aspects of data. Manuscripts in this chapter, as in previous ones, profile advancements and perspectives that might encourage the frame shifting associated with developing clinical data as a public good.
From page 222...
... Addressing the growing inefficiencies might yield greater health insights at less expense. There are needs for better coordination, a more standardized approach to healthcare data, and a more concerted effort to bridge research and data resource gaps through cross-organizational projects.
From page 223...
... The FDA has also been working with the Clinical Data Interchange Standards Consortium to try to standardize as many data elements as possible. But Pfizer's Slater pointed out that significant roadblocks remain in the effective sharing of clinical data across multiple organizations and platforms.
From page 224...
... Facilitate Cross-Organizational Efforts As session chair Blumenthal observed, one context for the panelists' remarks is that the environment for clinical data is much more distributive than ever. In terms of policy, that phenomenon overrides traditional instincts that policy makers bring to bear, which would be to assume that solutions would come by deciding what local, state, and federal governments could do.
From page 225...
... Part 11, the Health Insurance Portability and Accountability Act, and other legislation that are part of FDA and European Medicines Agency standards also help to ensure public access to clinical data. In addition, many companies voluntarily share their postmarketing safety data, Periodic Safety Update Reports, and clinical trials summary data.
From page 226...
... Policies on Data Sharing and Research In addition to identifying opportunities for enhanced coordination to support evidence generation and application, many workshop attendees indicated a broad sense of need to examine the scope of data sharing and research policies, including those that encourage the development of data as a public good and that aim to engage the complexities of patient consent to enhance the research process. Alignment of Incenties One carrot that Medicare has developed is that it has required the delivery of clinical data beyond the typical claims data as a provision for payment for certain services.
From page 227...
... Given those limits, the agency has had to be somewhat innovative, for example, by linking some clinical data collections to coverage of particular technologies. Woodcock also provided insight into a blood pressure study that had involved automated monitoring.
From page 228...
... Such a mechanism can help researchers build trust with patients -- by demonstrating the value, convenience, or pay-off of sharing data. AREAS FOR FOLLOW-UP Through session discussions and panelist commentaries, several possible opportunities were discussed to continue progress in the development of clinical data as a public good.
From page 229...
... Engaging health consumers in understanding the benefits of aggregated health data through public–private partnerships was suggested as a mechanism for facilitating the conversation with the public. Increasing understanding of the complexities of the healthcare data environment will involve efforts from all stakeholders.


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