We live in a golden age of medicine. Never before have so many effective treatment options been available to so many people. And precision medicine is bringing new horizons, as well as the promise to further improve disease prevention, treatment, and ultimately find more cures.
To keep moving toward personalized medicine approaches, more individuals would need to participate in research studies. Fortunately, people are often willing to engage in life sciences research when informed of the opportunity and its importance. At its best, research is a socially beneficial endeavor that empowers individuals to contribute to the betterment of health at large.
However, life sciences research isn’t as efficient as it could be. Many projects fail in the early stages, and it takes too long to progress new molecules from discovery to clinical trials.
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Improving the current state of life sciences research will require collaborative efforts on the parts of several stakeholders — in particular, hospitals, patients, and researchers.
What the Stakeholders Can Do
Hospitals are important arenas for research, as they treat an enormous number of individuals each year — nearly 35 million in 2014 in the U.S. alone. Further, they obtain biospecimens and associated clinical data as part of their normal operations, and both would be beneficial for researchers if sharing them were streamlined.
However, effective participation of hospitals in research does not always happen because the first priority of physicians and hospitals is tending to patients’ needs; additional pursuits like research aren’t always feasible.
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Therefore, research activity — especially involving basic life sciences — has largely been limited to major academic hospitals with the funding to dedicate staff to research. Unfortunately, given the complex natures of many diseases (like cancer and the need to study chronic conditions like diabetes and rheumatoid arthritis at the population level), it has become harder to identify enough patients for studies within academic medical centers’ walls. This ultimately slows down research and also limits the ability of healthcare providers to improve patient outcomes.
Where there is inefficiency, there is opportunity. By forming creative collaborations, most hospitals can become important contributors to life science research while continuing to embrace a patient-centric approach.
Hospitals are of course already set up in a patient-centric way: Teams of healthcare providers work to identify and treat problems on an individual basis. However, the information gleaned from patients is typically compartmentalized and unavailable to researchers. A crucial step in hospital engagement comes from educating hospital personnel about research opportunities so that they may, in turn, educate patients.
But the first step is to understand patients’ priorities. Patients typically want to support research, but they can’t be expected to dedicate enough time for it. Therefore, the easier it is for them to participate, the more likely they are to do so. For example, approaches that track and collect biospecimens and associated data from patients when they come in to see their doctors and other healthcare providers would be a good start.
It is important to keep complete transparency toward patients about research opportunities and to respect their privacy and choices by implementing proper patient consenting approaches. The research field has been moving toward opt-in patient consent as the best practice (e.g., patients have to expressly give their consent to participate in research projects).
Patients are much more interested in research after learning about the opportunities and what such involvement entails. More resources are becoming available for hospitals, even in the community setting, that are willing to get involved with research, such as grants from the Precision Medicine Initiative for the creation of a large-scale research participation cohort and grants for quality, effectiveness, and accessibility research.
The biggest factor enabling patient research contribution through hospital participation is the digitization of health records that has occurred in the U.S. over the last decade. Whereas paper documents require extensive work to organize and share, electronic medical charts and health records can be screened automatically in order to identify patients who might qualify for research projects, as well as track patients who have consented to participation in various projects. In addition to expediting the process, there is also reduced potential for human error in the data collection process, as well as higher data security standards.
Also, researchers often need biospecimens such as urine or blood samples. For consenting patients, blood samples may be collected with the existing workflow as part of routine annual checks or other routine patient visits to hospitals when samples are already being sent to the lab. Fitting research into existing workflow reduces burden on both the hospital staff and the patient by limiting the number of trips they take for involvement in research projects.
Understanding the priorities of life sciences researchers is another area where we can improve. They often have specific questions that they need to answer, and they have to operate within the constraints of certain budgets and timelines. Any solution for improved efficiency of and insights from the variety of research projects has to be easy to use, provide the right information at the right time, and fit their budgets.
An aligned, high-tech, efficient life sciences research setup would be a powerful tool that could enable collaboration among patients, healthcare providers, and researchers. The concept is a win-win arrangement that would hasten the advancement of medicine. Through novel utilization strategies of electronic records and existing hospital workflows, research can now be easily accommodated by the hospitals and should result in greater patient engagement. In the long run, it will pay off in the form of improved healthcare outcomes.
