Last Thursday, March 11, I was in Austin for the #SXSH Social Health 2010 Unconference, which was an incredible experience. Among other experiences that day, I helped lead an unconference session on “Librarians and ePatients as Partners”. After the session, some of the folks present (among them David Hale and Jen McCabe) encouraged me to flesh out some of the ideas we discussed into a blog post, and from there perhaps into an article.

Here are those ideas, and I would be most interested in your feedback and suggestions.

“And millions of knowledge workers are emerging as unexpected healthcare heroes. When they, or a loved one, become ill, they turn into e-patients — citizens with health concerns who use the Internet as a health resource, studying up on their own diseases (and those of friends and family members), finding better treatment centers and insisting on better care, providing other patients with invaluable medical assistance and support, and increasingly serving as important collaborators and advisors for their clinicians.” – Tom Ferguson, MD (with the e-Patient Scholars Working Group), ePatients: How they can help us heal health care, p. xii.

The more I learn about the ePatient movement, the more alignment I see between the situation and goals of ePatients and librarians — not just medical librarians, but librarians of all types. I’d invite ePatients, ePatient advocates, and librarians to consider this alignment in terms of five common principles, inspired by SR Ranganathan’s 1931 book The Five Laws of Library Science, which I consider one of the most timeless explanations of the professional ethic of librarianship:

1st Common Principle: Access. (Ranganathan’s First Law: “Books are for use.”) Ranganathan’s First Law was something of a radical proposal at a time when many still looked at libraries as a place for the collection, warehousing, and preservation of books, and where those books were in many cases guarded in closed back rooms or occasionally even chained down. Ranganathan and others worked to emphasize another view: that the value of information increases with its availability for use, not with its scarcity. This belief continues to drive librarians in a constant effort to ensure the widest possible access to information when and where it is needed.

ePatients, however, deal every day with access barriers. Their searches in Google, PubMed, or other tools lead them to links, citations, and abstracts for articles with potentially valuable information — but they sometimes struggle to follow these pointers to the articles they cite. Moreover, when they try to access the full text of the article, they are often asked to pay $25, $35, $45 or more per article — if in fact they can access an individual article without a subscription at all. Many ePatients may not be aware that their local libraries may provide them online access at home to some of those same articles through subscriptions held by the library. Even in cases where online access from home isn’t available, they may have additional access simply by stepping into the library itself (due to the way online materials are licensed).

In addition, however, librarians are at the forefront of the Open Access movement. Open Access advocates make a compelling case to researchers, publishers, and funding agencies, explaining that they realize more value for their investments in scientific research when the published results of that research are made freely available to the public. The benefits of increased Open Access to scientific research is clearly in the best interests of ePatients whose health depends on access to those publications.

2nd Common Principle: Universal right to information. (Ranganathan’s Second Law: “Every reader his [or her] book.”) Although many of us living in the early-21st-century United States assume “universal right to information” as a given, it is easy to overlook the factors that prevent that right from being effectively realized for many of our neighbors at home as well as those farther away. Digital divides of both economic and geographic dimensions mean that ePatients with reduced financial means (possibly struggling with high healthcare bills) and those in rural areas (where the doctor-patient ratio is the lowest) are also those who are disproportionately cut off from this “universal right”. In many parts of the world (and even in some places in the US), patients may be confronted with censorship of the online resources available to them. Moreover, librarians are very aware of the looming threat of erosion of net neutrality, and the potential negative impact that would have on the effectiveness of the “universal right” to online information for individual patients, community agencies, libraries, and other nonprofit entities.

This has an impact even on those ePatients who may not personally experience barriers to effective access to online information. The ePatient movement is very much about leveraging the power of communities and the “wisdom of crowds.” In that model of engagement, it follows that greater participation could be expected to result in better outcomes, while barriers to participation could result in limitations to improvement. When barriers like the digital divide, limited rural broadband, censorship, or degraded net neutrality cause some patients to be unable to participate effectively in the ePatient community, the whole community suffers.

3rd Common Principle: Findability, usability, accessibility. (Ranganathan’s Third Law: “Every book its reader.”) The principle of Ranganathan’s Third Law is that information is only valuable if the user who needs it is able to connect with it. The most valuable of sources cannot realize its value if it’s trapped in a book on the shelf, or in a database behind a paywall, out of the reach of the person who needs it.

Therefore, communities and resources for ePatients need to be designed with particular consideration of people using assistive technologies and those using mobile devices. They must also be designed to be optimally findable and usable for people who new to the internet, and people with limited English proficiency. Professionals in library and information science have been and continue to be involved in important research and developments in accessibility, search optimization, usability, and data integration.

4th Common Principle: Efficiency. (Ranganathan’s Fourth Law: “Save the time of the reader.”) As many ePatient stories have documented, the very first thing many patients will do upon receiving a new diagnosis is to go straight to their preferred Internet search engine, get back hundreds of thousands of results, and start reading. Some may perform a search in PubMed, get back tens of thousands of results, and start reading. Others may locate an email list or other ePatient community, access the archive of thousands of messages, and start reading.

All of these are valuable ways for patients to acquire deep personal knowledge and build intimate familiarity with their diagnosis, but they are not necessarily the most efficient way for them to get their immediate post-diagnosis questions answered and their urgent information needs met. ePatients need to understand any important lifestyle changes and decisions that they may need to face in short order, and they need those initial understandings and decisions to be based on the strongest evidence available to give them a useful framework for engagement with their healthcare team.

Librarians build and promote information literacy tools and frameworks, such as the Evidence-Based Practice Pyramid, to help clinicians and researchers evaluate the different kinds of research evidence available, use that evidence effectively and efficiently, and promote informed decisionmaking.

5th Common Principle: Scalability. (Ranganathan’s Fifth Law: “The library is a growing organism.”) Just like the library, the ePatient community is a growing organism. Five to six years ago, the primary medium for ePatient communities was email, in the form of email-based discussion lists, eventually backed by web-based archives like those at ACOR. Now, ePatient communities — like librarians — live in a burgeoning ecosystem of blog, wikis, Facebook, Twitter, Ning communities, and other social media, and are looking ahead to the potential importance of personal health records (PHRs) and other developments. Librarians and ePatients must stay aware of emerging technologies that will enable and facilitate access, community and engagement, and think ahead to the day when every patient is an ePatient.

Potential vs. Reality: Although I believe there is enormous potential for the kind of synergy I describe above, I think it’s clear that we have a lot of work to do before that potential can begin to be realized:

First of all, the relationship between librarians and ePatients currently suffers from a mutual lack of awareness: many ePatients are unaware of the many ways that librarians can assist them in their health research and their engagement with medical professionals, while librarians generally have not looked at ePatients as a specific community with unique information needs and values.

Second, both ePatients and librarians are also struggling in the midst of a shift of mindset — both in healthcare and in information studies — from an authority model, which values individual expertise, to a participatory model which values community-built knowledge and the “wisdom of crowds”. For example, librarians (particularly health science librarians) tend to speak of a certain subset of health information as “consumer health information” — material created with the “consumer” as its intended audience — as opposed to material intended for use by clinicians or researchers. ePatients, it seems to me, do not conceive of themselves as “consumers” largely because of the one-way transaction implicit in that term. ePatients do not “consume” healthcare or health information; they “engage” with it, they “participate” in it, they “co-create” it. And in doing so, they want to participate in understanding their healthcare using the very same research, guidelines and other material that informs the rest of their healthcare team.

Finally, librarians and ePatients share another common challenge: some of the changes and values for which they advocate are perceived as economically threatening by some strong economic forces. These forces may include some publishers, some healthcare providers, and even some telecommunications firms.

The Challenge: To fully realize the potential strength of an ePatient-librarian partnership, we must begin by increasing our mutual awareness and carefully listening to one another. With increased understanding, we will be able to develop our areas of alignment, both in terms of low-hanging fruit as well as long-term strategic directions.

Toward the end of this discussion at #SXSH, Chia Hwu referred to this as a “merging” of the librarian and ePatient communities, and in that characterization I sensed one very important starting point: librarians can take the first step by becoming ePatients themselves. Some of us may already be dealing with a specific diagnosis or condition of our own; others may be supporting the healthcare information needs of a specific friend, colleague or family member; still others might be focused primarily on healthier living or prevention, smoking cessation, weight control, or increasing physical activity. Whatever our situation, we as librarians need to:

1. become equal members of our own healthcare teams, actively engaging with our caregivers, our doctors, and the information sources behind our decisions,
2. begin to actively participate in communities of similarly-motivated patients and caregivers to ensure that our own ePatient experiences can benefit others [the Life Raft Group is just one example of how a librarian has participated with an ePatient group for powerful results], and
3. most of all, listen to and learn from the stories and needs of the other ePatients we encounter.

Edit [15:20 UTC]: I also want to thank and acknowledge some colleagues who helped me think through some of these ideas in preparation for this discussion: Nicole Dettmar, Julie Gaines, Emily Hurst, and Paula Maez.