By Dr Tom Foley, Dr Fergus Fairmichael.
Dr. Simpson is the President and Chief Executive officer of AcademyHealth. Before joining AcademyHealth, Dr. Simpson was director of the Child Policy Research Center at Cincinnati Children’s Hospital Medical Center and Professor of Paediatrics in the Department of Paediatrics, University of Cincinnati. She served as the Deputy Director of the Agency for Healthcare Research and Quality from 1996 to 2002. Dr. Simpson serves on the Robert Wood Johnson Clinical Scholars Program National Advisory Council, and the Editorial boards for the Journal of Comparative Effectiveness Research and Frontiers in Public Health Systems and Services Research. In October of 2013, Dr. Simpson was elected to the Institute of Medicine and received an honorary Doctor of Science from Georgetown University.
AcademyHealth is a leading national organization serving the fields of health services and policy research and the professionals who produce and use this work.
Acceptance and adoption of the LHS
The uptake and acceptance of LHS philosophy has been very varied so far. Where we have seen the real innovation and growth is in those that are working in partnership with health delivery systems. There still needs to be more proof of concept but, where systems are getting closer to the principles of a learning health system, we are seeing real improvements in patient care. Some early adopters of the LHS approached have produced some exciting projects and results. More recently, the Patient Centered Outcomes Research Institute (PCORI) has launched PCORNet, made up of several Clinical Data Research Networks (CDRNs) and Patient Powered Research Networks. As a result of this, there are number of large research networks doing some very interesting projects. One example is PEDSnet, which is a collaboration of healthcare organizations that are working together to form a national paediatric learning health system. Another interesting project is the C3N project at Cincinnati Children’s Hospital Medical Center, which is leveraging electronic clinical data but also using social networks to bring patients and physicians together in a collaborative innovation network – or COIN — to improve care and outcomes for chronically ill children.
There is some evidence of the academic community embracing the model of a LHS but currently the average academic institution has not engaged the full concept of the learning health system. A useful resource that reflects some of the learnings and results of the current US learning health system community is eGEMs, which is an open access journal focused on using electronic health data to advance research and quality improvement, with the overall goal of improving patient and community outcomes. This online, open access peer review journal is only two years old and already has 100 articles and over 47,000 full text downloads.
Understanding of the LHS
Currently there are a number of different views of the learning health system. The key components have been outlined by the Institute of Medicine, however people often pick up on and highlight individual elements that they are achieving. Few are achieving the entire cycle of learning. The questions are really, “How much of the population are using this to generate knowledge and to support decisions and how many are able feed this back into the system?” and “How deeply penetrated is this into the fabric of the entire organization or at what level of leadership?” At present, there is great variability in the answer to these questions.
There are multiple challenges around information governance, data ownership and stewardship. We have seen some elements of this addressed with distributed research networks but there is significant work still to be done.
The commitment of the organisation’s board is crucial. This would help to provide the philosophical commitment required to achieve a learning health system. We are starting to see new models of care emerge, such as Accountable Care Organizations, which are organizing care differently.
A fully actualized LHS would also require significant infrastructure investment. The ability to invest in the required infrastructure depends on philosophical commitments, leadership and the financial ability of the group. This is easier if you are a more dominant player in the field, with the resources available. In more competitive environments this may be difficult. The input costs could prove to be prohibitive for some systems and the payback period is likely to require a long term investment. Unfortunately there has been very little economic evaluation regarding these issues and this is desperately needed.
We are probably in a position where we have the necessary technology platforms to achieve a LHS, but there are problems with how these, including electronic health records, are deployed by different vendors and systems. This has ultimately led to the fact that they do not talk to each other and achieving easy, regular, cross system interoperability is still a goal, not a reality. This makes it difficult for the sharing of data across provider settings. There is a lot of work to do on IT infrastructure and the ability of data to follow the patient. There are currently not sufficiewnt requirements, incentives and/or rewards to get over the social and political barriers to achieving this. In this regard it is sociology not technology that is limiting the development of the IT infrastructure for a LHS.
Overall, the US investment in health services research (HSR) funding is inadequate by any measure but especially as a proportion of all that we spend on healthcare. There is also substantial variation in the extent to which US governmental agencies support HSR. Disease or organ specific research is far more likely to receive funding over studies on system performance given the way that the US National Institutes of Health are organized by “disease or body part” (e.g. cancer, lung and blood, etc…). The Agency for Healthcare Research and Quality was established over 15 years ago to address this need but its funding has always been insufficient to answer the many pressing questions about system performance. More recently, PCORI has included systems as a priority for funding but those studies are new and not yet yielding results. While advocacy and messaging about cures may be easier to “sell”, we continually remind advocates and policymakers that we also need to know how to get those cures to patients and that takes HSR.
Overall, within science funding, the entire portfolio is under pressure due to financial constraints. The NIH budget has shrunk, in real terms, by around 20% over the last 10 years.
From a research perspective, the realization of the LHS will be a tremendous advance. For this to happen the health services research community will also have to upgrade their skills and the way they do business. For too long, the majority of the health services research community has relied on administrative and survey data to generate retrospective studies that have been valuable. Extending this work by doing work with complex, clinically rich data from a broad representation of the population is a tremendous opportunity. However, we need to ensure that we are training professionals to respond to this new opportunity because the old skills may not suit. The basic methods of how you analyze and manage data are clearly needed and must be adapted for real time data collection as a by-product of the care process, but we also need to recognize the need for new research skills: for example, the important role of working in teams, the need to engage patients and other stakeholders in each step of the research lifecyle. In 10 -15 years, research will look very different to how it does today.
There is also a sense that the clinician role will change and they will become an evidence producer themselves. Clinicians will have access to much more information than they are used to and extra training will be required for them to be productive with this. Clinicians may not need to become full blooded researchers, but where the balance lies and what skills mix will be required is still unclear. This has not yet been defined well and there is some work to do to explore this. AcademyHealth has just established an education council to think about these issues and the continuous professional development that will be required. The need is not just for new entrants to the field of HSR, but also existing researchers There will be a need to know how to work with clinical electronic data, to ask and answer questions that are relevant to operational system leaders and to embed this into research within care and system processes.
It is also important to think about what this means for the patient and their role in the health system and in research. How to support and educate patients to be able to be active and engaged. Thinking through this new type of patient engagement is critical and we need to think about what we can do to support this. There is a lot to learn and AcademyHealth’s Consumer Ppatient Rresearcher Roundtable is helping us address these topics.