About 15 to 20 years ago, in the early days of browsers and websites, colleagues from the University of Washington, led by William Jones, launched a research project called “Keeping Found Things Found.” They interviewed many people to explore what we now call personal information management. You know what this is – it’s how you keep track of your medications, your child’s vaccination record, and your family’s health history. People are amazing at devising clever ways to hold on to personally meaningful and important information – you might even have yours stored in kitchen cupboards, file cabinets, calendars, and even family bibles!
If there’s one thing that libraries do well it’s keeping found things found and making them findable to others. NLM excels at this. NLM has more than 3 million books and journals in our physical collection, millions of genomic sequences in our data banks, and we maintain electronic access to almost 13,000 journals. We’ve also been devising new ways to make our print collection accessible during the COVID-19 pandemic, when access to the NLM building is limited, and preserve the pathways to electronic journals.
One thing NLM is NOT good at is personal health information management—this just isn’t our specialty. NLM funds research to better support people’s abilities to create personal health libraries, but we don’t store personal health information. NLM’s hallmark is acquiring, preserving, and making available for public use scientific knowledge for health as represented in books, journal articles, and data banks. Under special circumstances, we will create ways to collect and archive public information that supports personal health actions that stem from events ranging from the AIDS crisis to the COVID-19 pandemic.
Sometimes libraries help create public information from personal stories. NLM is doing just that to capture the experiences of federal volunteers who have been helping support HHS’ Administration for Children and Families Office of Refugee Resettlement Unaccompanied Children Program. By partnering with the Office of NIH History & Stetten Museum, we are compiling and making available the personal stories of NIH staff who volunteered for this important initiative.
My family and I have also benefited from programs supported by federal libraries to keep the stories of individual people found. In 2005, my son and I participated in an initiative supported by a nonprofit organization to record, preserve, and share a wide variety of stories told by people just like you and me. To prepare for our interview, my then 11-year-old son, Conor, scanned the suggested questions (which he wouldn’t tell me about ahead of time) and ventured off to the mobile studio. It was an amazing experience.
Each storyteller gets about 45 minutes to speak while a sound engineer records the interview on high-quality audio, which is eventually preserved. Participants are offered the opportunity to have their story archived at the Library of Congress and have a portion of their story broadcast over NPR (National Public Radio). Conor and I agreed to both, so we became a part of the many personal stories of the United States. You can listen to the segment broadcast on NPR here.
I loved this whole experience and treasure the sound of my son’s 11-year-old voice. The variety of questions he asked me was surprising, and it gave us a new chance to document our family history. Yet, figuring out what to do with that CD recording over the ensuing decade has been a challenge to me – it’s moved with me three times and is now lodged between two cookbooks on one of my bookshelves – making me grateful that that I have a library and a URL that is helping keep this important thing found.
There are a lot of good reasons why NLM should NOT be the place where personal information is found – privacy, personal control, and the ever-growing trail of records that characterize health care across the life span. The complex mess of papers, pictures, and small books that most of us use to keep track of personal information aren’t amenable to the services of a library, whose goal is to acquire, preserve and promote access by all to a broad range of information. But there are many stories, records, and other notations about our health that individuals need to keep found across their life span. NLM needs your ideas here – should we fund the development of new apps that manage health information? Should we collaborate with electronic health records system companies to urge them to build personal health information resources for their patients? Is this a place where stimulating the business market could help?
I’m grateful that the Library of Congress committed to storing brief encounters between people telling their life stories, but in order to keep my story found, I had to share it with others.
What can we do to keep things found and accessible only to the individual?
I remember when Google attempted to create a personal medical record ap. At the time Simon Liu who was the head of OCCS and our neighbor down the street was excited about it and began using it. It flopped. But I like the idea of keeping my own medical record through an ap. I have access to many of my records now through patient portals but interoperability is still not complete and one doctor can’t see my records from another doctor. It would be great to have everything in one place with me so I don’t have to remember my whole medical history when I go to a new doctor! However I’m not sure it’s NLM’s role to create this ap.
Thank you for taking the time to share your thoughts on my blog post, and we appreciate your support! We also have a funding opportunity in this area: https://grants.nih.gov/grants/guide/pa-files/PAR-19-072.html — it is expiring this month but we continue to be interested in innovative research in personal health information management – while we won’t continue the funding announcement and we don’t support building apps, we do realize there’s a lot of research to be done here.