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Personal health records and clinical trials

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Can personal health records (PHRs) revolutionize the clinical trial industry?  In our opinion: Yes.  We’re interested in what you think, as well.

To foster a discussion to solicit your opinion, find below a primer on PHR and what the public and private sector are doing to promote PHRs.

What are PHRs?

PHR is a patient-controlled document of his or her health information in a format of his or her choice.  (A medical health record, by contrast, is patient health information controlled by a physician, healthcare institution or health insurance company.)  Information documented in a PHR can be as limited as emergency health information to facilitate emergent care or as broad as all provider visits, diagnostic records, prescriptions, and health insurance information.  Storage formats can range from a local computer hard drive, portable hard drive, or internet-based subscription service.

Public sector PHR activity

Medicare (Centers for Medicare & Medicaid Services), since 2006, has undertaken several pilot programs to encourage the use of PHRs.  For more about Medicare pilots, click here.  A number of policy recommendations have been made by the National Coordinator of Health Information Technology.

Certification Commission for Health Information Technology (CCHIT) has assembled a special PHR Advisory Task Force and created an associated workgroup in order to draft a set of certification criteria for PHRs. The certification criteria, which are scheduled for release by 2010, will place an emphasis on industry privacy safeguards while also addressing security and interoperability issues. For more information, click here.

A number of states have introduced legislation to govern the usage of PHRs.  For a survey of state-level legislation, see the National Conference of State Legislatures tracking by clicking here.

Private sector PHR activity

A list of players in the PHRs:

  • CapMed.com
  • Microsoft HealthVault
  • Caregiver Alliance Web Services
  • MiVia
  • CEND-PHR
  • MyGroupHealth (Group Health Cooperative)
  • Collaborative Family Health Record
  • MyHealtheVet (U.S. Department of Veterans Affairs)
  • Dossia
  • MyHIN
  • FollowMe
  • MyMedicalRecords.com
  • Google Health
  • Myphr.com
  • HealthAtoZ
  • Patient Gateway (Partners HealthCare)
  • iHealthRecord.com
  • PatientSite (Beth Israel Deaconess Medical Center)
  • LifeOnKey
  • RecordsForLiving.com
  • Med Alert
  • e-Healthkey
  • Revolution Health Group
  • MedCommons
  • VitalChart

While not meant to be exhaustive, the list above suggests that policy announcements have encouraged a proliferation of private sector offerings in the PHR space.  For a more exhaustive list, visit myPHR.  In addition, several non-profit organizations have initiated studies to evaluate standards to optimize interoperability, security and data modification (see Robert Wood Johnson Foundation, PDF).

Opportunity for clinical trials

The “low-handing fruit” for science and clinical research, in our opinion, lies in the intersection of PHRs and these core areas:

  • Analysis of diagnostic data for patient identification for clinical trial recruitment
  • Self-identification for clinical trial recruitment
  • Analysis of historical records for hypothesis creation

Interested in your opinions…