The Affordable Care Act encourages the use of technology in making health care more efficient and less administratively complex. (This emphasis on technical efficiency may strike some as ironic, considering the initial online snafus plaguing the Healthcare.gov Marketplace registration site.) There have been other recent legislative efforts to address the adoption of electronic medical record keeping especially. The Health Insurance Portability and Accountability Act of 1996 (HIPAA) is particularly concerned about protecting the privacy of individuals’ health records in electronic transactions. The Health Information Technology for Economic and Clinical Health (HITECH) Act of 2009 established federal support for investment in health technology, including of course electronic health records. It seems that the impetus for medical technology is widespread in this particular point of our history.
At the same time, “patient engagement” has also become a key focus among health care providers. Patient engagement is defined as the process by which a patient is actively involved in maintaining or improving his or her health often in partnership with health care providers. (See http://innovations.ahrq.gov/issue.aspx?id=117.) For those patients whose conditions may necessitate their dependence on others to help them with their daily care, a caregiver can and should be recruited to act as partners in this patient engagement process. However, the family caregiver’s important role is sometimes overlooked by promoters of patient engagement. In addition, while many articles in the literature and online seem to naturally conclude that patient engagement and technology go hand in hand, there is a danger that those without technical means and/or know-how will be left further behind in this ever more “linked in” society.
As I write this, Health Literacy Month , which is observed in October of each year, is wrapping up. As a consumer health librarian, I encounter people every day who struggle with making sense of health and health care information, not to mention the complex health care system we all must navigate the best we can. Often these are folks who are caregivers for others in their families, a vital role not only for their own loved ones but generally speaking for all of us in society. Suzanne Mintz, blogging for Engaging the Patient, makes a credible case for regularly documenting who it is in a family that performs any primary caregiving role in the medical records of a patient. In so doing, not only is the role of caregiver highlighted and promoted to partner status with the healthcare team, but the caregiver’s health literacy skills might also be considered in any provider/patient communication, online or otherwise. The patient’s and caregiver’s preferences should be solicited in terms of how they want to receive information. Naturally, one would hope and expect that no provider would make assumptions about a patient’s or caregiver’s access to technology in communicating with him or her without checking first. Still, it is true as Ms. Mintz suggests that caregivers are often not given their due either system-wide, from insurers for example, or individually from providers. This is due for a change – and now seems to be the time!