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.
Patti, this is a lovely and profoundly important essay.
One of the first and most durable findings of the Pew Internet Project’s health research was that half of online health information searches are conducted on behalf of someone other than the person with their fingers on the keyboard. It was last measured in a 2012 survey and generally I hesitate to cite data that old, but hey, the Washington Post included another stat from the same study in an article today, so I feel emboldened.
We found that 72% of internet users say they looked online for health information of one kind or another within the past year and about 8 in ten of those inquiries started at a search engine. So the more you can boost the NLM’s offerings in search results, the better, and the more you can make those articles, infographics, illustrations shareable – especially on mobile phones – the better.
Another key data point for you and your team: One in four people seeking health information online have hit a pay wall. Most people tried to find the same information somewhere else, but 13% gave up completely. The more we can make health information accessible – in every way – the better.
Here’s the study:
Health Online 2013
http://www.pewinternet.org/2013/01/15/health-online-2013/
Susannah – thank you for linking the amazing work of the Pew Internet Project to this Musings post. Indeed, one of the key contributions of the Pew work was that it was the first to squarely point out that information seeking is a social activity and that information presentation would best consider not only what information responded to a query but also how to convey that information to others.
We’re working to improve the search and retrieval process in all of our products at NLM. For those interested in our experiment with relevance ranked search, please check out PubMed Labs at http://bit.ly/2ATVnz9!
Patti
Often our support in times of illness includes our friends too. And some single people only have friends living near them, with family living far away. I’m wondering if “family centered care” has considered this too?
Melissa – you are so right! Sometimes family structures emerge around us in moments of need. What do you think that these “families of choice,” friends around us during a time of need, share with “families of blood”? One characteristic I think they share is endurance!
Patti
I loved this post. I commented on twitter and while I hadn’t read Melissa York’s comment, I had the same sentiment. Even though I’m married it is usually my friends I turn to for support during an illness . True confession, my friend Pam came to stay with me while I was recovering from kidney surgery at the CC of the NIH and we got reprimanded for laughing too much! But on a serious note friends can be the lifeline for many patients so important to keep them in mind.
Samantha Fox’s response was also very informative. Even though I’m a librarian and have access to journal articles, because we are a school library many of the medical journal articles aren’t accessible in our databases.
Another thing I wish I had connected with sooner was online support groups. Think I was so frazzled by the diagnosis and trying to find a doctor that I just didn’t concentrate on this until after my surgery. So information on the disease itself is important connecting patients with other patients via support groups is also important.
Patti this should be filed under better late than never, but a friend of mine helps manage an online patient support community called Smart Patients. She has written a wonderful piece on what patients need to know, especially newly diagnosed cancer patients. If you are looking for a guest blogger, her piece would be a good connection to this post.
Regards,
Debbie Gottsleben, SLMS