Here’s a question which inspired me today, received via email from Christie Silbajoris,  director of NC Health Info:

My library is rethinking its provision of services to the public.  We’ve got a history of going beyond what the average academic health sciences library provides in this area but in this age of budget cuts (and in consideration of other factors) we’re taking another look to see if there is something we should be doing that would be more meaningful and helpful to the NC citizens.  I’m most interested in the explosion of peer-to-peer health care and mobile information and think we might be able to make an impact in these areas. Do you have any thoughts about possible roles that academic health sciences libraries could play?

My response:

I sure do, but they are only ideas, inspired by what I’m observing, so take them as such.

I’m writing a synthesis of the Pew Internet Project’s first decade of health research, hoping to summarize “how we got here” and look ahead before we dive straight into the next decade.

Here is a sort of ghost story about an academic medical library, excerpted from Tom Ferguson’s “e-Patients White Paper” (PDF – in English or Spanish):

One morning in 1994, the year Netscape released the first commercial Web browser, the Englewood Hospital library in Englewood, New Jersey, received a most unusual call. The caller identified himself as Dr. Harold Blakely, a local family practitioner. He gave the librarian a bibliographic citation for an article in a medical journal and asked her to make him a copy and to leave it on the table outside the library door, where he could pick it up on his evening rounds. This request was not unusual. The hospital librarians frequently left copies of journal articles that local doctors could pick up after the library had closed.

Later that afternoon, the caller phoned again, checking to be sure that his article was ready. But the library’s director, Kathy Lindner, took the call this time. Ms. Lindner knew Dr. Blakely. But she did not recognize the caller’s voice. After a brief discussion with a colleague, she phoned Dr. Blakely’s office. After several minutes a bewildered Dr. Blakely came to the phone. He assured Ms. Lindner that neither he nor anyone in his office had called the hospital library that day.

Half an hour after the library closed that evening, a nervous, well-dressed man with carefully barbered grey hair entered the hospital through a side entrance. Walking with a cane, he passed the elevator, climbed the stairs with some difficulty, and continued down the second floor hallway toward the medical library. As he picked up the envelope with Dr. Blakely’s name on it, a hospital security guard stepped out of the doorway where he had been waiting and asked him to identify himself.

Under the questioning of the hospital’s security service, he admitted that he was Edwin Murphy, a 58-year-old insurance agent with a chronic hip problem. Dr. Blakely, his physician, had been urging him to undergo a promising new surgical procedure. Mr. Murphy was intrigued but not convinced. He wanted to know more about the potential risks and benefits of the proposed procedure and had repeatedly asked Dr. Blakely to help him obtain a copy of the definitive review article, which had recently appeared in a major medical journal. In spite of his repeated requests, Dr. Blakely had not done so. Finally, in desperation, Mr. Murphy had decided that there was only one way to obtain this vital medical information he needed: He would have to impersonate his own physician.

Eccentric behavior, one might say, at least in those days of journals sitting locked up in medical libraries and clinicians who were not ready for a patient’s request for more information. Nowadays, such articles are published online – either in open-access journals or those requiring a fee – and anyone with internet access can conduct their own information search. Clinicians have come to expect that a percentage of their patients will educate themselves about their condition, participating as full partners in a conversation about treatment decisions.

So how did we get here?

In 1995, one year after Mr. Murphy impersonated his doctor, only about 1 in 10 American adults had access to the internet. By the year 2000, about half of American adults had access to the internet. Now, about 75% of adults and 95% teenagers in the U.S. have internet access.

In the year 2000 only 5% of households had broadband access. Now, two-thirds of Americans have broadband at home, which means that many more people have more engaging, “always on” access. One early Pew Internet study looking at how broadband changes us as internet users found that dial-up users took part in an average of 3 online activities per day. Broadband users took part in 7.

Eight in ten American adults have a cell phone. Six in 10 American adults go online wirelessly with a laptop or mobile device.

With each hurdle passed, from basic internet access to broadband to mobile, Pew Internet research shows that each one has a multiplying effect on people’s behavior. Mobile devices like smartphones are changing us, once again, as internet users, making us more likely to share, more likely to access information on the go, and, placing most American adults on the other side of a massive shift in communications.

In the last 15 years we have seen the internet go from a slow, stationary, information vending machine to a fast, mobile, communications appliance that fits in your pocket.

On the health front, eight in ten internet users look online for health information, making it the third most popular online pursuit among all those tracked by the Pew Internet Project, following email and using a search engine. This has been a remarkably stable trend, hovering at about 80% since we began measuring health information seeking in 2002, even as number of adults who go online increased and the internet-user population broadened to include a more diverse cross-section of the U.S. population.

These days, someone like Mr. Murphy can begin to research options before he even leaves his doctor’s waiting room. He might scan abstracts on PubMed and pick out a few to read at his leisure. In some practices, he might be handed a list of fellow patients’ email addresses – people who have faced the same diagnosis or treatment. He might navigate to an online patient network for people with the same condition, where he can ask questions and get support. He might post an update to Facebook or another social network site to let his friends and family know what’s going on.

Or, if he so chooses, he can keep his smartphone in his pocket and wait to talk in person with a loved one, the old-fashioned way. He may rely on a trusted relative or friend to do the research. Indeed, half of health searches are conducted on behalf of someone else – a new level of caregiving.

Then again, if someone like Mr. Murphy doesn’t have internet access of any kind, nor a care network to support him, he may be perpetually stuck in 1994, wishing he could participate fully in a major medical decision but not having the resources to do so. Who doesn’t have information access is as important a question for the future of healthcare as who does.

Now, what you’re asking about is going to be the second part of my project — what’s ahead? One possibility is for clinicians to acknowledge the power of peer-to-peer healthcare and encourage people to find other people like them (online, probably, but offline is possible too). I’ve seen a few examples of this and I wrote about them here:

Mind the Gap: Peer-to-Peer Healthcare: Beacons of Change

But back to Mr. Murphy, who really just wanted that one article. He may have benefited from peer-to-peer healthcare in that his network could have provided a clandestine copy of the article, plus other people’s personal reviews of the procedure, recovery time, etc. But what about just making sure that everyone who wants to read journal articles, can read them? What can you do to open access where it is currently closed?

On a personal note, here’s an article I’d love to read and discuss with my friends, but I’m not an NEJM subscriber, so not only can I not read it, but I can’t share it:

Making Sense of the New Cervical-Cancer Screening Guidelines

What if I, an educated consumer who knows that she should get a Pap smear but isn’t quite sure how often, could read the latest medical journal article available? What if I, an avid user of social network sites and pretty social person in real life, could spread that knowledge to my female friends, relatives, and colleagues?

Yes, I can rely on mainstream news coverage of the NEJM article. But what if I’m on an information diet and I want to go straight to the source, not the filtered version? For me, in this case, it’s still 1994.

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