The cerebral paralysis research (CPRN) network is a comprehensive network of hospitals and community members who work together to improve health results for people with PC. Organize community and clinical records to collect comprehensive data for research. In a recent presentation to the collaboration of Learning Health Sciences at the University of Michigan, Paul Gross, CEO of CPRN, explained how the network is taking advantage of EHR data for research and improvement of quality and adoption of A learning health system model.
Gross, who has a child with hydrocephalus and CP, is described as a driving force to accelerate clinical and translational research in neuroscience for cerebral palsy and hydrocephalus. In addition to his work with the CPRN, he is co -founder of the Hydrochalus clinical research network, the former president of the HyDrocylus association (HA) and co -founder of the Hydrocephalus clinical research network for adults.
CPRN was founded in 2015 with the mission of optimizing the health and well -being of people with PCs and their families, and the central approach is high quality research, education and programming. The network has grown to 35 centers and includes more than 15,000 patients and almost 3,000 community members.
One of the first things that the founders of CPRN did was execute a three -month program funded by Pcori to establish a patient -centered research agenda. “Our vision is that by involving a community of interested parties and a large number of health systems together in a learning health network for CP, we can collectively focus research and attention,” Gross said. “We gather and share the lived experience of community members, and measure aspects of the health process to continually improve their health and well -being in a way that matters to them.”
Gross talked about what the effort implies to grow in a learning health network. They take standardized data collected for usual care and integrate in the hospital’s EHR so that habitual attention can be done with some structured data. “That allows us to capture data from all these different types. All the characteristics of the patient, all measures and scales that are applied if they receive treatments, whether doctors or surgical, and the results, ”he explained. In which they are working is a local registry in which all these data are accessible to do things about that cohort of patients in the hospital, but also to centralize it in a national registry. “Then, as we improve the results, we can make changes in these forms and templates to make the implementation and spread of the central results we create,” he added.
Turning this into a learning health network implies collecting all this data into a single data coordination center. “Our sites sign an agreement for the participation and use of data that refers to a set of standard operational procedures that are developed collectively within the network,” Gross added. “They sign that agreement with the CP Research Net The back -end, the back -end, the back -end, the back -end, the back -end, the back -end, the back -end, the back -end, the back -end, the back -End, The back -end, the back -End, the ED CP Research Network has a declaration of work with the University of Pittsburgh, with Steve Wisniewski, which coordinates its epidemiology data center. Learning
Gross also talked about his research and improvement strategy. “In other networks with which I have been involved, we have tried to raise money to do many pilot studies and make the studies happen. Here, what we are trying to do is invest in the infrastructure to let a thousand flowers flourish and really stimulate the ecosystem, ”he said. “We established the patient -centered research agenda. We build the infrastructure of the records, the network and that data coordination center to help doctors with the data they need to analyze the variation of the practice or develop studies. We try to balance between generating evidence, answering unanswered questions) and gathering equipment to improve attention and improve results. Then we use that record and all those data to support research for the generation of hypotheses or recruitment planning, and also to monitor the implementation of our improvements and results over time. “
He said that this has led to a lot of activity, many publications, many ideas that made their way through the pipe. “I will say that several of these quality improvement projects have also produced manuscripts.”
An example is an approach to improving pain evaluation in adults. “We were able to grow from 24% of the visits to 90% of the visits where pain was being evaluated, and that was one of the main elements that was on our patient -centered research agenda,” he said. “We were able to take that data and use them to request a subsidy for a study of pain classification, which is only entering its second year at this time.” They also take some of these improvements and push them to the notes that doctors are using to disseminate that improved evaluation and track it over time.
CPRN is investing in some new areas this year to try to increase the number of interested parties that participate in their work and double the size of their community advisory group, so that they can involve them in each study, Gross said.
In summary, he identified several benefits for other care sites, other hospital systems, other doctors to participate with CPRN, including a better knowledge exchange. For example, they held a series of meetings in which each of the sites presented its CP care model, and shared it in 12 of the centers.
There is also the improved attention that arises from the quality improvement methodology. “What I think is unique about what we do is this connection between the EMR and the registration that is part of the usual attention means that we are not predominantly trusting duplicate data of clinical research assistants that extract data; We also have this large set of results informed by the patient that can be linked to all these clinically validated data, ”said Gross.
