The rise of the e-patient - Lee Rainie
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The rise of the e-patient - Lee Rainie

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In this talk to medical librarians (conference website: https://3bythesea.pbworks.com/Program), Lee Rainie covered how e-patients and their caregivers have become a force in the medical world. In ...

In this talk to medical librarians (conference website: https://3bythesea.pbworks.com/Program), Lee Rainie covered how e-patients and their caregivers have become a force in the medical world. In addition, he looked at the many ways that e-patients are using the internet to research and respond to their health needs and to share their stories using social networking sites, blogs, Twitter, and other social media.

Lee also discussed how medical librarians can exploit Pew Internet’s tech-user typology to find new ways for engaging e-patients and their families.

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  • Oh ! its simply amazing.Such a nice presentation is quite rare.Ya,e-patients are now increasing day by day.Each and every slide here is more than perfect.Hope too see you more and more.
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  • Abiotic Sunlight Temperator Precipitation Soil water chemistry Biotic components Primary producers Herbivores Carnivoers Omnivores Detritivores In biological real ecosystems, the process that dominates is the flow of energy and heat In the digital ecosystem, the process that dominates is the flow of information Desktop 65% Laptop 37% Cell phone 75% 62% digital camera 41% video camera 38% DVR 34% MP3 player 11% PDA like blackberry or Palm
  • expand
  • expand
  • 1. Persistence. What you say sticks around. This is great for asynchronicity, not so great when everything you've ever said has gone down on your permanent record. The bits-wise nature of social media means that a great deal of content produced through social media is persistent by default. 2. Replicability. You can copy and paste a conversation from one medium to another, adding to the persistent nature of it. This is great for being able to share information, but it is also at the crux of rumor-spreading. Worse: while you can replicate a conversation, it's much easier to alter what's been said than to confirm that it's an accurate portrayal of the original conversation. 3. Searchability. My mother would've loved to scream search into the air and figure out where I'd run off with friends. She couldn't; I'm quite thankful. But with social media, it's quite easy to track someone down or to find someone as a result of searching for content. Search changes the landscape, making information available at our fingertips. This is great in some circumstances, but when trying to avoid those who hold power over you, it may be less than ideal. 4. Scalability. Social media scales things in new ways. Conversations that were intended for just a friend or two might spiral out of control and scale to the entire school or, if it is especially embarrassing, the whole world. Of course, just because something can scale doesn't mean that it will. Politicians and marketers have learned this one the hard way. 5. (de)locatability. With the mobile, you are dislocated from any particular point in space, but at the same time, location-based technologies make location much more relevant. This paradox means that we are simultaneously more and less connected to physical space.

The rise of the e-patient - Lee Rainie The rise of the e-patient - Lee Rainie Presentation Transcript

  • THE RISE OF THE E-PATIENT Trends in the use of digital technology for health purposes Lee Rainie Director – Pew Internet Project Medical Librarians Atlantic City 10.7.09
  • New information ecosystem: Then and Now Industrial Age Info was: Scarce Expensive Institutionally oriented Designed for consumption Information Age Info is: Abundant Cheap Personally oriented Designed for participation
  • 2000 46% of adults use internet 5% with broadband at home 50% own a cell phone 0% connect to internet wirelessly <10% use “cloud” = slow, stationary connections built around my computer The internet is the asteroid: Then and now 2009 77-79% of adults use internet 63% with broadband at home 85% own a cell phone 54-56% connect to internet wirelessly >two-thirds use “cloud” = fast, mobile connections built around outside servers and storage
  • Media ecology – then (industrial age)
    • Product Route to home Display Local storage
    • TV stations phone TV Cassette/ 8-track
    • broadcast TV radio
    • broadcast radio stereo Vinyl album
    • News mail
    • Advertising newspaper delivery phone
    • paper
    • Radio Stations non-electronic
    Tom Wolzien, Sanford C. Bernstein & Co
  • Media ecology – now (information age)
    • Product Route to home Display Local storage
    • cable TiVo (PVR) VCR
    • TV stations DSL TV Satellite radio player
    • Info wireless/phone radio DVD
    • “ Daily me” broadcast TV PC Web-based storage
    • content books iPod /MP3 server/ TiVo (PVR)
    • Cable Nets broadcast radio stereo PC
    • Web sites satellite monitor web storage/servers
    • Local news mail headphones CD/CD-ROM
    • Content from express delivery pager satellite player cell phone memory
    • individuals iPod / storage portable gamer MP3 player / iPod
    • Peer-to-peer subcarriers / WIFI cell phone pagers - PDAs
    • Advertising newspaper delivery non-electronic cable box
    • Radio stations camcorder/camera PDA/Palm game console
    • game console paper
    • Satellite radio e-reader / Kindle storage sticks/disks e-reader/Kindle
    Adapted from Tom Wolzien, Sanford C. Bernstein & Co Ubiquitous computing age Cloud computing “Internet of things”
  • Information and media ecosystem changes
    • Volume of information grows
    • Variety of information increases
    • Velocity of information speeds up
    • The times and places to experience media enlarge
    • People’s vigilance for information expands AND contracts
  • Information and media ecosystem changes
    • The immersive qualities of media are more compelling
    • Relevance of information improves
    • The number of information “voices” explodes – and the voices become “louder” and more findable
    • Voting and ventilating are enabled
    • Social networks are more vivid
  • Behold Networked Individuals … those with a different sense of …
    • Expectation about access to, availability of, and pathways to information
    • Place, distance, presence, intimacy – it’s all ambient
    • Time use
    • The possibilities of work, learning, and play
    • The scalability of conversation and community
    • The persistence of “digital me” and “digital you”
    • Personal efficacy and the payoff for personal effort
    • Boundaries and contexts – public and private
    • The rewards and challenges of networking for social, economic, political, and cultural purposes – new layers and new audiences
  • A new pattern of communication and influence built around social networks and participatory media
    • The four A’s of searching and acting
    • attention
    • acquisition
    • assessment
    • action
  • Networked Individuals as e-patients
    • 61% of total population – 83% of online population
    • 64% of women; 57% of men
    • 65% of whites; 51% blacks; 44% Hispanics
    • Age
      • 72% of 18-29-year-olds
      • 71% of 30-49-year-olds
      • 59% of 50-64-year-olds
      • 27% of those 65 and older
    • Skews upscale and educated
    • Parents
    http://e-patients.net/
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  • Other e-patient activities
    • 47% of adults have used the internet to get information about doctors or other health professionals
    • 38% have gotten information about hospitals or other medical facilities
    • 33% have gotten information about how to lose or control their weight
    • 27% have gotten information about health insurance
    • 12% have gotten information about how to stay healthy on an overseas trip
  • 60% of e-patients engage with social media
    • 41% have read someone else's commentary or experience about health or medical issues on an online news group, website, or blog.
    • 24% have consulted rankings or reviews online of hospitals/other medical facilities.
    • 24% have consulted rankings or reviews of docs or other providers.
    • 19% have signed up to receive updates about health or medical issues.
    • 13% have listened to a podcast about health or medical issues.
  • 20% of e-patients are e-participators
    • 6% have tagged or categorized content about health issues.
    • 6% have posted comments about health issues in an online discussion, listserv, or other online group forum.
    • 5% have posted comments about health on a blog.
    • 5% have reviewed a doctor.
    • 4% have reviewed a hospital.
    • 4% have shared photos, videos or audio files online about health or medical issues.
  •  
  • A handy tech-user typology
    • http://www.pewinternet.org/Reports/2009/5-The-Mobile-Difference--Typology.aspx
  • What we measured
    • Assets
    • Actions
    • Attitudes
  • Overall picture
    • 39% are motivated by mobility
    • 5 groups that are being drawn into deeper use thanks to mobile connections
    • Wireless connections prompt them to use the internet more and feel better and better about its role in their lives
    • Self expression and networking matters to them, but some have mixed feelings
    • 61% are tied to stationary media
    • 5 groups that do not feel the pull of mobility – or anything else – drawing them deeper in the digital world
    • Some have lots of technology, but it is relatively peripheral in their lives
    • They have plateaued in internet use and enthusiasm -- or are on the outskirts of digital life
  • Motivated by mobility – Group 1 Digital collaborators (8% of population)
    • Tech lifestyle attributes
    • With the most tech assets, Digital Collaborators use them to work with and share their creations with others.
    • The lead the pack in every dimension of our analysis: assets, actions, attitudes towards technology.
    • Always-on broadband and always-present cell connection is key to their lives.
    • These veteran users are enthusiastic about how ICTs help them connect with others and confident in how to manage digital devices and information.
  • Motivated by mobility – Group 1 Digital collaborators (8% of population)
    • Demographics
    • Male: 56%
    • Median age: 39
    • Race: Diverse
    • Education: 61% college +
    • Household income: 53% make > $75K
    • Employment status: 70% employed FT
    • Community type: 52% suburb; 36% urb.
    • Funky facts: 12 years online
            • 73% married
            • 51% parents minor children
  • Motivated by mobility – Group 1 Digital collaborators (8% of population)
    • Important because
    • They are your most consistent, primary users
    • They are early adopters
    • They are most potent influentials; they are evangelists and their word of mouth really, really matters
    • When you want to explore new services, they will give you feedback
  • Motivated by mobility – Group 2 Ambivalent networkers (7% of population)
    • Tech lifestyle attributes
    • Ambivalent Networkers have folded mobile devices into how they run their social lives, whether though texting or social networking tools online.
    • They tie for first or take second in all assets and actions categories.
    • They also rely on ICTs for entertainment.
    • But they also express worries about connectivity; and some find that mobile devices are intrusive.
    • Many think it is good to take a break from online use.
    • Their keyword about technology might be “obligation” – can’t afford to be off the grid, even though they want to be.
  • Motivated by mobility – Group 2 Ambivalent networkers (7% of population)
    • Demographics
    • Male: 60%
    • Median age: 29 (youngest)
    • Race: Little more minority than DigCollab.
    • Education: 23% college +
    • Household income: 44% make < $50K
    • Employment status: 64% employed FT
    • Community type: 44% suburb; 45% urb.
    • Funky facts: 30% are students
            • 34% are NOT email users
            • 83% are cell texters
  • Motivated by mobility – Group 2 Ambivalent networkers (7% of population)
    • Important because
    • They are tomorrow’s primary e-patients and library-service users and influencers
    • They have seen change in libraries and liked it
  • Motivated by mobility – Group 3 Media movers (7% of population)
    • Tech lifestyle attributes
    • Media Movers have a wide range of online and mobile habits, and they like to find or create an information nugget, such as a digital photo, and pass it on.
    • These social exchanges are central to this group’s use of ICTs – rather than work-related uses.
    • Cyberspace as a path to personal productivity or an outlet for creativity is less important.
    • They are not into online content creation the way Digital Collaborators are, yet they are big-time sharers.
  • Motivated by mobility – Group 3 Media movers (7% of population)
    • Demographics
    • Male: 56%
    • Median age: 34 (second youngest)
    • Race: Diverse
    • Education: 32% college+ (average)
    • Household income: 56% make > $50K
    • Employment status: 70% employed FT
    • Community type: 55% suburb; 30% urb.
    • Funky facts: 31% record video on cell
            • 87% own dig. camera
            • 90% online health seekers
  • Motivated by mobility – Group 3 Media movers (7% of population)
    • Important because
    • They are least intense e-patients, though lots of them have sought medical information online
    • They are eager social networkers who pass along your material
    • They add to the diversity of your audience
  • Motivated by mobility – Group 4 Roving nodes (9% of population)
    • Tech lifestyle attributes
    • Roving Nodes are active managers of their social and work lives using their mobile device.
    • They get the most out of basic applications with their assets – such as email or texting – and find them great for arranging the logistics of their lives and enhancing personal productivity.
    • They love email and texting, but are too busy to blog or create other content.
    • Think “working Little League mother”, or caregiver for aging parent when you think of Roving Nodes
  • Motivated by mobility – Group 4 Roving nodes (9% of population)
    • Demographics
    • Female: 56%
    • Median age: 39
    • Race: Diverse > Latino
    • Education: 44% college+ (2nd highest)
    • Household income: 52% make > $50K
    • Employment status: 68% employed FT
    • Community type: 48% suburb; 39% urb.
    • Funky facts: 100% have cell phones
            • heavy internet use at home and work – hard to give up
            • say tech gives them control
  • Motivated by mobility – Group 4 Roving nodes (9% of population)
    • Important because
    • They are kin-keepers and caregivers
    • They will appreciate you if you help them be efficient and thorough
  • Motivated by mobility – Group 5 Mobile newbies (8% of population)
    • Tech lifestyle attributes
    • This group rates low on tech assets, but its members really like their cell phones.
    • Mobile Newbies, many of whom acquired a cell in the past year, like how the device helps them be more available to others.
    • The act of getting a cell phone was like a conversion experience for them in the way it opened up the world.
    • They would be hard pressed to give up the cell phone. And they express general support for the role technology can play in people’s lives even though most do NOT use the internet.
  • Motivated by mobility – Group 5 Mobile newbies (8% of population)
    • Demographics
    • Female: 55%
    • Median age: 50 (oldest MBM group)
    • Race: A bit weighted to minorities
    • Education: 72% HS or less
    • Household income: 45% make <$40K
    • Employment status: 53% employed FT
    • Community type: 24% rural
    • Funky facts: just 39%=internet users 46% use computers
            • none create internet content
            • love new connectedness
  • Motivated by mobility – Group 5 Mobile newbies (8% of population)
    • Important because
    • They are very unlikely to be e-patients and quite unaware of the wealth of material available online
    • They greatly diversify your audience
    • They are traditionally under-served customers
  • Stationary media majority – Group 1 Desktop veterans (13% of population)
    • Tech lifestyle attributes
    • This group of older, veteran online users is content to use a high-speed connection and a desktop computer to explore the internet and stay in touch with friends.
    • They are happy to be connected with they are stationary and sitting. So, they place their cell phone and mobile applications in the background.
    • For them, online life hit its zenith about 3-5 years ago when they first got broadband connections.
    • And their 2004 cell phone still serves its primary purpose for them – making phone calls.
  • Stationary media majority – Group 1 Desktop veterans (13% of population)
    • Demographics
    • Male: 55%
    • Median age: 46
    • Race: Skews white
    • Education: 41% college+ (3 rd highest)
    • Household income: 32% make >$75K
    • Employment status: 56% employed FT
    • Community type: 52% sub.; 30% urb.
    • Funky facts: just 77% have cells
            • int. user 10.5 years
            • heavy int. users at home and work
            • average content creators
  • Stationary media majority – Group 1 Desktop veterans (13% of population)
    • Important because
    • They are relatively intense e-patients
    • They already know about the things you do
    • They are influencers, too
  • Stationary media majority – Group 2 Drifting surfers (14% of population)
    • Tech lifestyle attributes
    • Many have the requisite tech assets, such as broadband or a cell phone, but Drifting Surfers are infrequent online users.
    • They also are not big fans of mobile connectivity.
    • When they use technology, it is for basic information gathering.
    • It wouldn’t bother the typical Drifting Surfer to give up the internet or cell phone.
    • Likely to be secondary user of technology in household.
  • Stationary media majority – Group 2 Drifting surfers (14% of population)
    • Demographics
    • Female: 56%
    • Median age: 42
    • Race: Diverse
    • Education: 33% college+; 33% HS
    • Household income: 46% make >$50K
    • Employment status: 66% employed FT
    • Community type: 46% sub.; 35% urb.
    • Funky facts: 85% have home broadbd 86% have cells
            • below aver. tech user
            • tech doesn’t help much 46%=“good to take break”
  • Stationary media majority – Group 2 Drifting surfers (14% of population)
    • Important because
    • They are not aware of the material that is available online and through other resources
    • They will need you some day
  • Stationary media majority – Group 3 Information encumbered (10% of population)
    • Tech lifestyle attributes
    • Most people in this group suffer from information overload and think taking time off from the internet is a good thing.
    • Their attitudes about the role of technology in the world have worsened since 2006 and they see no great benefits from technology in their personal lives.
    • The Information Encumbered are firmly rooted in old media to get information and communicate.
  • Stationary media majority – Group 3 Information encumbered (10% of population)
    • Demographics
    • Male: 67% (highest)
    • Median age: 53
    • Race: Skews white
    • Education: 33% college+; 37% HS
    • Household income: 42% make <$40K
    • Employment status: 40% employed FT
    • Community type: 48% urb; 20% rural
    • Funky facts: 99% are int. users
            • 75% are cell users
            • only 52% online typ. day 52% feel overloaded
            • 62% need help new gad.
  • Stationary media majority – Group 3 Information encumbered (10% of population)
    • Important because
    • They are the alienated and society functions better with their participation and involvement
  • Stationary media majority – Group 4 Tech indifferent (10% of population)
    • Tech lifestyle attributes
    • Members of this group are not heavy internet users.
    • Although most have cell phones, they don’t like their intrusiveness.
    • The Indifferent could easily do without modern gadgets and services. They are too much trouble with too little payoff.
  • Stationary media majority – Group 4 Tech indifferent (10% of population)
    • Demographics
    • Female: 55%
    • Median age: 59 (2 nd oldest)
    • Race: Diverse (little higher Af-Am)
    • Education: 73% HS or less
    • Household income: 59% make <$50K
    • Employment status: 34% employed FT
    • Community type: 26% rural
    • Funky facts: just 39% are int. users
            • 46% computer users but 86% are cell users
            • least likely users of everything
  • Stationary media majority – Group 4 Tech indifferent (10% of population)
    • Important because
    • They are on the far side of the digital divide even though they have some relationship to technology
    • Very few e-patients
  • Stationary media majority – Group 5 Off the net (14% of population)
    • Tech lifestyle attributes
    • Members of this group have neither cell phones nor online access, and tend to be older and low-income.
    • Some have experience with ICTs. They used to have online access and as many as one in five used to have a cell phone.
    • But it broke, or didn’t provide much enhancement to their worlds, so they did not return to using the technology.
  • Stationary media majority – Group 5 Off the net (14% of population)
    • Demographics
    • Female: 57% (highest)
    • Median age: 67 (oldest)
    • Race: Skews to minorities
    • Education: 80% HS or less
    • Household income: 38% make <$20K
    • Employment status: 17% employed FT
    • Community type: 30% rural
    • Funky facts: just 16% have desktop or laptop
            • they see no lifestyle improvements with technology
  • Stationary media majority – Group 5 Off the net (14% of population)
    • Important because
    • These are often the people who most need medical information
    • Their caregivers need you, too
  • 8 tips on how to be a node in a social network
    • Think like a friend
    • Remember your strengths and play to them by being an expert, a filter, and a recommender (linker)
    • Be aware that your audience is bigger than the available evidence provides – lurkers and future arrivals are part of the mix
    • Look for opportunities to provide support to users and chances to build communities with your material
  • 8 tips on how to be a node in a social network
    • Help people cope with technology
    • Participate in the Web 2.0 world
    • Embrace the move towards mobility, constant connectivity, perpetual contact
      • This changes the realities of time and space and presence
    • Ask for help/feedback
  • Thank you!
    • Lee Rainie
    • Director
    • Pew Internet & American Life Project
    • 1615 L Street NW
    • Suite 700
    • Washington, DC 20036
    • Email: [email_address]
    • Twitter: http://twitter.com/lrainie
    • 202-419-4500