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Challenges to Overcome

Collections of biological specimens, active patient participation in clinical trials, and electronic health records (EHRs) are critical resources for medical researchers.

At FasterCures, we seek to better leverage these resources and further promote the opportunities that EHRs, biobanking, and clinical trials present for finding cures for deadly and debilitating diseases.

Biobanks

Currently, there are over 300 million clinical specimens stored in the U.S. alone. Yet without high-quality, clinically-annotated tissue and a common information platform, these samples aren't used to their fullest potential.

Another challenge facing biobanking is the issue of privacy protection, laws, and regulations which can impede patient participation in donating biospecimens.

In addition to these privacy issues, patients also lack information about how to donate, and oftentimes physicians do not solicit biospecimen donations from their patients.

FasterCures launched BioBank Central to address these challenges. BioBank Central is a health information system that serves as an accurate and timely source of news and knowledge about biorepositories and their role in research and drug development.

Clinical Trials

Clinical trials are the only way of evaluating whether new diagnostics, drugs, experimental medical devices, and surgical techniques actually work.

These trials are dependent upon patient involvement. There are many reasons for the lack of patient participation including:

  • Patients not having enough information about clinical research;
  • Physicians not having enough information and not informing their patients about the possibility of enrolling in a clinical trial;
  • Patients and doctors having misconceptions about clinical trials.

 

FasterCures brought together leaders in the clinical trial field to discuss what works in addressing these issues, to share novel strategies, and to highlight the work of innovators who are yielding results.

Read more:

PDF "Clinical Trials Recruitment and Retention: Best Practices and Promising Approaches" (PDF)

Electronic Health Records (EHRs)

Even if all health providers were to adopt EHRs, there is no guarantee that these systems would be useful for research. To effectively serve research needs, database systems will have to meet different and somewhat higher standards.

Several systemic problems must be addressed if EHRs are to be useful for research, including:

  • Clinicians do not observe and record data in standardized ways;
  • Clinical records are not uniformly reliable and complete;
  • Most database software systems in use today have an administrative or claims orientation;
  • Much of the information in a patient's records is unstructured text, physicians' notes, and comments;
  • Practice databases must be integrated to facilitate data mining.

FasterCures is focused on ensuring that the special needs and challenges of clinical research are understood by those responsible for building and implementing EHR systems and the Nationwide Health Information Network. FasterCures has issued a number of reports that have identified action steps.

PDF "Accelerating Research through the National Health Information Network" (PDF)
PDF "Ensuring the Inclusion of Clinical Research in the Nationwide Health Information Network" (PDF)