For some people, it’s still 1994

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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18 Responses to “For some people, it’s still 1994”

  1. Thank you Susannah, for posting my question and for your thoughtful reply. More open access is certainly a worthwhile goal. I’m looking forward to hearing additional ideas from this group about potential roles and services that health sciences librarians could play and provide to better serve the needs of the public. What do you all think? What could we do that would make an impact? What needs aren’t being met that librarians are in a position to help fill?

  2. The Internet is indeed a wonderful resource that has made it far more easy and accessible for people to research any health condition. But I also don’t believe that medical knowledge has ever been all that difficult to obtain, although personal experiences will vary.

    For instance, I can’t speak for hospital libraries, but I know that virtually all public university libraries are open to the public for anyone to visit, read and copy journal articles, etc. While perhaps not as comprehensive as a medical library in terms of their medical holdings, it is a good start for many seeking out a specific journal article.

    I will also note here for anyone who find themselves in a situation similar to Mr. Murphy’s in the future… Virtually every researcher who is contacted personally — whether by phone, snail mail, or email — will provide someone with a copy of one of their journal articles at no charge. If it’s done by snail mail, they may ask you to provide a SASE (self-addressed stamped envelope).

  3. Dr. Bob says:

    Simplistically thinking about old roles in a new medium:

    1. Libraries make information available. More people have access to more information these days, but as Susannah said, not everyone has Internet access, and even those who do may not have access to certain information.

    2. Librarians help people find information. The haystack is bigger, so it’s harder to find the needle. And there’s no Dewey Decimal system for the Internet.

    3. Libraries enable people to meet others with similar interests. They host talks and discussions. Speaking of the Dewey Decimal system, what about a “book club” (forum) for each Dewey Decimal “section”?

    Bob

  4. A couple of comments.

    First, my observation as a librarian is that Dr Grohol is correct: “virtually every researcher who is contacted personally… will provide someone with a copy of one of their journal articles at no charge.” Unfortunately, too many of these researchers fail to realize that when they signed the publication agreements to get published, they may have actually surrendered their right to do so. Only recently are authors — guided by organizations like SPARC from the Association for Research Libraries (http://arl.org/sparc/) — starting to get smarter about retaining those rights when they negotiate publication agreements.

    Second: the typical licensing agreement between a publisher and an academic library for online access to full text journal articles allows the library to offer that access to two groups: (1) faculty, staff and students who authenticate with username and password can be given access off-campus, but also (2) anyone — regardless of affiliation — who comes into the library and uses one of our computers can access full-text content online for free. So Susannah, if you want access to that NEJM article, just find a University library near you that has a subscription to NEJM full-text content online, and just stop right in. I’m pretty sure you’ll find lots of helpful assistance there too.

    Still, I realize, not everyone has that luxury or that awareness — particularly those who may need it most. As we continue to advocate for open access, how can we help address the current gaps between patients and the literature, while working within the constraints of the licensing agreements we have with the publishers?

  5. Luke has picked on what I think is the most glaring omission here: “not everyone has that awareness”. Before you even look for a full text article you must know: 1/that it exists and 2/ that it may have some benefit to your own individual case. That is a far more difficult bar to cross than getting access to a specific article, which can almost always be achieved by asking the main author for a PDF version of said article, as previously noted by all.

    Networked patients live in a world where it is normal to share information about new publications. After all, in order to take charge of your care, you must have access to the same tools that health professionals rely on to present the various treatment options they propose. But for most of the population, this may not even be on the radar. As usual, scientific studies are sorely needed to test this hypothesis.

    Finally I would encourage people reading this thread to look at what Peter Murray-Rust, one of the most ardent defenders of real Open Access, is proposing, to allay some of the problems we mention. His Open Research Reports initiative is very interesting. See Open Research Reports: What Jenny and I said (and why I am angry) and this about last week hackathon

    • Hi, Gilles – I agree about the awareness thing. Increasingly this fall I’ve been getting the feeling that although it would be hard to turn the average citizen into an avid researcher, we should IMO be able to make everyone aware of the usefulness and legitimacy of seeking information to supplement wherever they get their care. I think Pew has discussed that many people get their “e” by proxy – someone searching on their behalf – but I can’t find the cite. Those are the people we want to reach (IMO) and better enable.

      I want two roles that aren’t widespread today to become widespread, to address that awareness issue:

      1. An “information coach” in your medical home, who can teach people about health info seeking – the validity of it and the basics of how to do it. (Why shouldn’t everyone know about ACOR.org, Inspire.com, etc.??)

      2. Medical librarians as the “deep seekers.” As we’ve discussed many times here, Google by design shows you stuff that lots of people know about, but will never show you the obscure stuff. That’s where curators of knowledge, and their tags applied through the discipline of information science, can make a huge difference.

      This is why I’ve been so cranked up about speaking at the MLA (Med Lib Assn) when I can. In partnership with our information coaches, they will be the pipeline, the capillaries if you will, through which the needs of patients and families draw the nourishment of valuable knowledge.

      • Susannah Fox says:

        Thanks to Dave’s suggestion, I just added that “information by proxy” data point to my Pew Internet: Health cheat sheet:

        http://www.pewinternet.org/Commentary/2011/November/Pew-Internet-Health.aspx

        Here’s the salient text:

        Half of internet users (48%) who go online for health information say their last search was on behalf of another person, 36% say their last search was on behalf of themselves, and 11% say it was both for themselves and someone else. Thus, while eight in ten internet users go online for health information, the impact of their inquiries may be even broader. And while some groups, such as the chronically ill and those living with disability, are less likely to be online and searching for health information, it does not mean that this information does not reach them through a surrogate of some kind.

        (Based on a September 2010 national phone survey.)

  6. Susannah Fox says:

    Gilles, Dave, thank you.

    Your comments arrived at nearly the same time as I received a disheartening email from a friend of a friend regarding her mother’s recent cancer diagnosis.

    It seems that her GP cannot (will not?) recommend any oncologists or next steps and the family is attempting to activate their networks in order to get the mom on a treatment path. The primary players (the patient and her husband) are clearly in shock because their #1 concern is that they find an oncologist with convenient parking. I kid you not.

    The friend of a friend remembered that I do work related to health care and may know a little something about kidney cancer thanks to a family member’s bout with it. I sent an email immediately, advising the family to consider doing 3 things:
    - join KIDNEY-ONC on ACOR.org
    - call the National Cancer Institute hotline
    - continue to network their way to oncologist recommendations

    Today I sent along a link to Eve Harris’s lovely Open Letter to My Friend Who Was Recently Diagnosed with Cancer in the hopes that her advice is useful.

    Now, lessons learned from this episode:

    On the one hand, the ad hoc system for finding good health care is cranking to life. ACOR and NCI – two really useful resources – were only 3 degrees of separation away from the person who needs them. Not bad.

    On the other hand, why is the system so ad hoc? How many people are not within 3 degrees of good advice? How can the loop be closed? How can the concept of peer-to-peer healthcare be spread beyond the early-adopter group?

    And, back to the point of Christie’s question: Is there a role for a local academic health sciences library in closing the loop?

  7. Brian S. McGowan PhD (@BrianSMcGowan) says:

    Dave, Susannah, Gilles, Luke:

    In completely honesty and vulnerability – this is where I struggle most with the empowered patient movement – which I embrace, please do not get me wrong. I have great fear that the principles will only and can only apply to those equipped to understand and utilize them regardless of how user-friendly the systems are engineered.

    Each of the case studies we see (including Dave’s) seem to involve a patient empowered with unique skills or access: a journalist, a scholar, an IT programmer, a poet – these may not be the healthcare one percenters, but they are certainly not the healthcare norm either. I have not studied health literacy rates recently, but I remember being shocked and dismayed by them.

    For empowerment to be scalable we must ALWAYS consider those well outside our echo chamber, those who are not aware of medical libraries (or who can not access them), those who’ve never seen a research paper (and would have no reason to ever read one).

    In the past few years we have seen the empowered patient go from being seen as a nuisance (at times) to becoming an active partner in care (by some). What happens if we continue down this path and the empowered patient becomes the expected patient, when systems evolve to reward the empowered patient, when clinician begin to rely on the empowered patient to support and inform their own care. What then will be made of the patients still unknowingly or apologetically ‘stuck in 1994′

    • Brian S. McGowan PhD (@BrianSMcGowan) says:

      This coming from a man who can’t even spell check his posts…so take it with a grain of salt…

    • Susannah Fox says:

      I love your phrasing: What happens if the empowered patient becomes the expected patient?

      And I share your deep concern: How do we get past the early-adopter phase?

      I wrote about that here:
      http://www.pewinternet.org/Reports/2011/20-Mind-the-Gap/Part-4/Section-1.aspx

      The text:

      What will it take to bring this to the next level?

      Let’s go over the roadblocks:

      - pockets of people who are truly offline, which mostly describes people age 70 and older or those living with chronic disease or disability
      - people who see no reason to engage in their health, who are not motivated to change their behavior or seek treatment
      - technology that is simply a pain to use
      - communities and tools which are silos of information – unconnected to clinical practice and unable to connect with each other
      - a lack of awareness that online communities, information resources, and other tools exist and can help make a difference in health outcomes

      Let’s go over the opportunities:

      - caregivers who can help someone access online resources they may need to get better care
      - a life-changing diagnosis or other event that prompts engagement – and triggers the diagnosis difference
      - mobile adoption, which seems to have an independent effect on people’s engagement online – the mobile difference
      - technology that is easy to use, that makes engagement fun and even irresistible
      - technological means to connect silos and let data flow
      - mainstream press coverage, word of mouth, and clinical programs that help to spread awareness

      Again, back to Christie’s question, since I think it’s a really good one: Is there a role here for libraries?

      I’m re-reading a 2007 report by my Pew Internet colleagues to see if there are insights relevant to this discussion:

      Information Searches That Solve Problems
      http://www.pewinternet.org/Reports/2007/Information-Searches-That-Solve-Problems.aspx

      One quote:

      “The survey results challenge the assumption that libraries are losing relevance in the internet age. Libraries drew visits by more than half of Americans (53%) in the past year for all kinds of purposes, not just the problems mentioned in this survey. And it was the young adults in tech-loving Generation Y (age 18-30) who led the pack. Compared to their elders, Gen Y members were the most likely to use libraries for problem-solving information and in general patronage for any purpose.”

      I know Brian & I share a love for BJ Fogg’s model of putting “hot triggers in the path of motivated people” (see: http://behaviormodel.org/ )

      Is the library a place for some hot triggers? What would those look like?

      • Susannah, you asked: “Is the library a place for some hot triggers? What would those look like?” It is certainly one of the places where it can happen. But churches are probably much more important for whole segments of the US population. For this important part of the US population the chance that there will be a visit (or regular visits) to a church far outweigh the chance of a visit to a library with an expert medical librarian on call.

        I REALLY love the work of medical librarians, but strongly believe their influence should be massively augmented by working hand in hand with church leaders to promote higher health and digital literacy. This could easily transform the nation’s understanding of many significant health issues and their solutions.

  8. Susannah Fox says:

    Boom! Love this question: What if librarians teamed up with church leaders? Is that happening anywhere?

    Church attendance, like doctor’s appointments, are practices which, in the words of John Seely Brown and Paul Duguid “will not budge” and therefore require designers of any new health care innovation “to look not ahead, but to look around” in order to see the way forward. See their book: The Social Life of Information http://people.ischool.berkeley.edu/~duguid/SLOFI/toc.htm

    • Susannah Fox says:

      For additional context, Gilles & I attended a meeting in 2006 which opened our eyes to the power of faith & church communities.

      Here’s the data I presented at the meeting:

      http://www.pewinternet.org/Presentations/2006/Demographics-Degrees-of-Internet-Access-and-Health.aspx

      And here’s how I described it in a speech in 2008:

      An early example of participatory medicine is the Association of Cancer Online Resources or ACOR.org, which is a collection of listserves, going strong since 1995. Participants say they gain knowledge and support that they can’t get elsewhere. But a University of North Carolina study of the group revealed its membership to be 98% white, 86% college-educated. The UNC researchers convened a meeting to discuss the “whiteness” of online health communities, and some of the reasons put forward for low participation among African Americans included:

      - unfamiliarity with computers and even basic keyboard skills, especially among seniors
      - rules against the discussion of God and faith
      - historical distrust of doctors and medicine (memories of the Tuskegee Syphilis Experiment are fading in the younger generations, but are still present)

      See:
      http://www.pewinternet.org/Reports/2008/Recruit-doctors-Let-epatients-lead-Go-mobile/Recruit-doctors.aspx

  9. Brian S. McGowan PhD (@BrianSMcGowan) says:

    I am interested in church-based models such as that recently begun at Saddleback:

    Pastor Rick Explains The Daniel Plan on The Dr. Oz Show! http://bit.ly/sdEjQU (maybe Dr. Oz isn’t all bad)

    I fundamentally believe (as Fogg suggests) that getting people engaged in their own health requires that we simultaneously engineer solution to address their motivation, ability, and awareness. To me all three can be impacted significantly by integrating solutions into their daily lives. We can not ask people to take on healthy behaviors AND ask them to visit new places (libraries) AND ask them to join new communities (ACOR). We can’t expect them to change 3 behaviors simultaneously – if we do we will lose all but the most intrinsically motivated.

    We MUST leverage systems/communities that already exist – churches, family, friends, and habits.

    I am becoming increasingly fascinated by these challenges and I thank each of you for continuing to teach me…perhaps it is time for me to go back to school and start working on an MPH?

    • Brian,

      at the UNC meeting I discussed with many African American public health experts how we could solve the issue we (the UNC & ACOR team) had surfaced during the research project “Health eCommunities: The Impact of Listserves on Cancer Patients“, i.e. that 98% of ACOR members who accepted to answer our questions were white.

      Without exception, these public health experts said “you don’t have a clue. You just don’t understand the depth of our distrust of the medical system. The only way you can change your numbers is to use local churches as proxy. The moment you’ll do that, churchgoers will implicitly trust your groups”

      I believe that a well designed initiative developed with a significant African American church would show that, when working together, we can probably change their level of health & digital literacy AND join an appropriate online community, which would greatly benefit from their input, since it would bring more variety of POV, and impact their health behaviors.

      The medical librarians would have to work with the church (and not ask people to physically got to the library), just as Dr. Mark Hyman, a prominent metabolism expert, is doing with the Saddleback Church (see At a Big Church, a Small Group Health Solution).

  10. Joe McCarthy says:

    As an intermittent participant in participatory medicine, I had never downloaded the e-Patient white paper until I read the excerpt Susannah posted here (thanx, Susannah). Stories are powerful, and that one tipped the balance for me, and I look forward to reading more – about the stories and the data & analysis – in the white paper over the holiday break.

    Luke’s idea about the prospect of changing expectations is intriguing, reminding me of the power of expectations (or lack thereof) in the context of education. I don’t know of any resolution to the perpetual debates about whether teachers should teach to the highest vs. lowest vs. middle students, but it strikes me that part of the transformation toward increasingly empowered patients will involve (require?) a similar transformation of medical professionals as taking on more of a role as teachers … and I wonder whether / how the disparate financial infrastructures that fund education vs. medicine might affect such a transformation.

    Dave’s proposal for [health] information coaches and deep seekers is an interesting idea. In the context of medical professionals as teachers, I’m thinking of health information coaches as tutors. I don’t know whether the number of professional patient advocates is on the rise, but given that deep seekers (medical librarians) already exist, health information coaches seems like a promising area of specialization in patient advocacy, and it does seem that such people may help bridge some gaps during this period of transformation.

    I had not encountered the Open Research Reports article that Giles referenced, but the succinct articulation that “open knowledge saves lives” and “closed knowledge means people die” resonates. I have felt (and expressed) similar anger about health, science, knowledge, access and elitism after a series of personal encounters with high barriers to information access … and viewing a video of Lawrence Lessig’s presentation on The Architecture of Access to Scientific Information, in which he characterizes science as a remix culture.

    I concur with Gilles assessment that churches are more important than libraries for large segments of the U.S. population, and I suspect that people who hang out in libraries may be more inclined toward seeking information than the general population. However, given that many religious organizations actively oppose the dissemination of medical or health information that might conflict with their moral stances (reproductive options and stem cell research come to mind), I do not have much faith that churches or church leaders will play a truly transformative role in empowering patients.

    Finally (for now), all of the foregoing, combined with the reference to 1994 in the title of this post, brings to mind George Orwell’s 1984, and the Book, or “The Theory and Practice of Oligarchical Collectivism”, allegedly written by Emanuel Goldstein, the allegedly traitorous archenemy of Big Brother. I don’t want to make too much of the connection between the banning of The Book and the barriers to access to health information, but I do think that any person or organization whose success (or survival) is predicated on oligarchic principles ought to be concerned in this era of collective questioning of authority and embrace of empowerment by growing numbers of people throughout the world.

  11. Michelle Helliwell says:

    I’m reading over the blog and the thoughtful responses. Patient education (I term I personally loathe but it is short hand) and health literacy are extremely important to me and subjects I am deeply passionate about. I am a librarian who works within the healthcare system in Canada.

    In particular, I am interested in the choices, motivation and uses people make when it comes to their health information. I am thinking of it in the broadest sense as well – not just “disease” information, but what they need to maintain/improve an overall way of life. The issues are complex and I will be completely honest in that I don’t have a good sense of how younger to middle aged folks who live on the lower end of the SES use internet technology to seek out health info, in whatever context (calling your mother and asking for advice about a crying babe is health information seeking). However, I do feel that public libraries – and librarians – have a signifigant and I think untapped role in the health information landscape, perhaps as health information coaches – not just as seekers, but rather in an information literacy role – some kind of really basic critical appraisal, or helping the person to determine what is the next step, what is the next question – which may need to be directed at a health care provider, or some other commmunity service. And teaming up with others just makes sense. Here in Nova Scotia, more and more collaborative practices are being set up – and I think that there should be a librarian in each and every one of them, just for this purpose. But I am not sure if librarians see this role for them, or not.

    I haven’t had the time to really delve into this but Susanna I am pleased to see you making the roads into MLA. I think a trip to Toronto to the OLA superconference should be in your sights someday:)

    Thanks for introducing me to this blog and the great discussion here.

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