Today I want to reflect on how the concept of patient- and family-centered care may guide the NLM to reach new users in new ways.
Over the past year in this blog, I have highlighted several ways that libraries have expanded to attract patrons and serve their needs. Fundamentally, each of us in the library field develops personas for our patrons, and uses these personas to guide the selection of materials and strategies for delivering those materials. Today I am asking you to reflect on what contributes to your ideas of family.
Despite common assumptions, families are not necessarily a resource of support for people facing health problems. Indeed, think of the kinds of resources that libraries would need to develop in support of family-centered care when the very concept of family could be fractured at any time.
Differences in culture or circumstance also impact families, with many families defined by selection and affiliation, not by blood. What does this mean to a library?
It challenges us to organize materials in a way sufficiently broad enough to encompass many definitions of family. For example, our MeSH heading for family includes phrases like “kinship networks” and “stepfamilies.”
It also challenges the very way we deliver that information.
Right now, most of our resources are designed to reach a single person. Even our strategies to improve access to those resources, such as training for health literacy or reducing presentation bias, presume the person reading and searching the literature will also interpret and act upon it.
But a limited, idealized view rarely squares with reality.
What’s more likely is that health literacy is a family resource, not an individual talent; that health information is shared, debated, and discussed without regard to strict legal lines of relationship; and that patients define their families in myriad ways—each equally legitimate.
These ideas underpin the practice of patient- and family-centered health care, which acknowledges that patients’ families look all sorts of ways, that patients are free to determine how their families (however defined) will participate in care and decision-making, and that the resulting partnership between patients, families, and health care providers promotes better outcomes.
The idea of patient- and family-centered care is not new, but it is becoming more common in today’s health care system. Now we need to find ways to infuse it across NLM’s health information systems as well.
We need to provide tools that make it easier to collect and share health information and to support family discussions and decision-making. We need to think about new roles, such as the “health ambassador,” who serves as the bridge between patients and their families and the health care team. And we need to think beyond the individual, looking system-wide for ways that patients and families—however they are defined—look for and use health data.
And with the strategic plan on the horizon, it’s a good time to think differently.
It’s time to throw off old presumptions, ferret them out from our design requirements, and make sure those who find our health information can make use of it in ways that fit their lives, not just what we think their lives to be.
Because NLM exists to serve all families—regardless of structure, definition, or size.