Serendipity brought me two opportunities this week to present Pew Internet’s data on communities of color and young people, particularly as it relates to health. On Wednesday I was a guest of the Federal HIV/AIDS Web Council and on Thursday I spoke at a meeting convened by CommonHealth ACTION. I’ll share some insights I picked up at each event along with the data I presented.
My story in both settings was essentially the same:
The most important source of information for people making a day-to-day health decision, in many cases, is not a website, or even a clinician, but another person who shares the same condition. As mobile, social tools spread throughout the population, people are connecting with each other. Why not harness those tools for health?
Pew Internet’s evidence for the mobile focus:
- 83% of U.S. adults own a cell phone.
- 35% of U.S. adults own a smartphone and one-quarter of them use their phone as their main source of internet access.
- This trend is especially pronounced among adults ages 18-29, adults who identify as black, and adults who identify as Latino.
- Text messaging is an epidemic among 18-24 year-olds. This group sends or receives an average of 109.5 text messages PER DAY.
- Black and Latino cell phone owners are more likely than whites to send a high volume of text messages.
(Sources: Americans and Text Messaging; Smartphone Adoption and Usage)
Small screens outnumber big screens all over the world and certainly among young people, African Americans, and Latinos in the U.S.
I loved that the CommonHealth ACTION event organizers invited a panel of college and graduate students to follow the “expert” panel since this was an event focused on youth. Each student was asked to talk about their favorite piece of technology – unanimously, it was their cell phone, which serves as their alarm clock, their social hub, their music source, their project manager, their flash cards, and even their spiritual touchpoint. One student talked about how she relies on her phone for daily devotions. Another said, “As long as I have my cell phone, I’m OK.”
When asked how they would react to a week without their cell phone or internet access of any kind, students described brushes with this uncomfortable state. A damaged phone led to the realization by one student that he didn’t even know his mother’s phone number. Another described how, when she lost her phone, she rushed to a computer so she could post an urgent status update letting people know that she would be unreachable. One student described a no-technology camp she had attended, adding that, if she had to go a week without her phone, “I would be at peace.”
And when it came to how they use technology to pursue health, the students displayed the kind of savvy that had the audience swooning: they went to high-quality online resources, fact-checked what they found, and sought medical attention when necessary. One student with significant foot pain said she first called her mom, then searched online for information, and THEN went to the campus health center. She said that her online research calmed her because she was pretty sure she was dealing with a ganglion cyst. Her doctor was amazed to confirm the diagnosis, but the student laughed: “How did I know? I Googled it, of course.”
The “mobile difference”
Pew Internet research shows that when someone has a mobile device connected to the internet, they are more likely to share, to forward, to create, and to consume online information, from text to photos to videos. They are more likely to participate in the online conversation about health.
Just like peer to peer file sharing transformed the music industry by allowing people to share songs, peer-to-peer healthcare has the potential to transform the pursuit of health by allowing people to share what they know and connect with other people.
Cathy Thomas, of AIDS.gov, shared another “mobile difference.” People who search the AIDS.gov site from a mobile device use much more specific terms than those who search from a desktop or laptop. Mobile seems to make things personal, immediate, and specific.
We are just beginning our journey to integrate social tools into health care. Even people who recognize the potential of these tools are daunted – there are so many unknowns. What the Pew Internet Project hopes to do is reduce the number of unknowns so policymakers and community groups can make decisions based on facts, not conjecture.
What about apps?
Fully half of U.S. adult cell phone owners now have apps on their phones – those software programs which allow you to get updates on topics like the news, weather, sports scores, or stocks. Some apps help people track or manage their health – about 1 in 10 cell phone users have a health app on their phone.
What about Facebook?
Half of American adults and 80% of online teens use a social networking site – and the vast majority have a profile on Facebook.
The Pew Internet Project’s report on social networking sites found that, contrary to fears that technology isolates people and has a detrimental impact on society, Facebook users are more trusting than other people. Facebook users have more close relationships and get more social support than other people do.
We uncovered evidence that social life online does indeed have a positive association with a healthy social life offline. We are building networks online that we tap into when we need help or advice.
What about chronic disease, which disproportionately affects communities of color?
People living with chronic conditions like high blood pressure, diabetes, lung conditions, heart conditions, and cancer are less likely than other people to have access to the internet.
However, once they do have access, they are just as likely as other internet users to look for health information. We have also identified the “diagnosis difference” – holding all other demographic characteristics constant we find that having a chronic disease significantly increases an internet user’s likelihood to say they both contribute and consume user-generated content related to health.
I want to hear it from someone like me
Pew Internet research also shows that one in five internet users have gone online to find others who might have health concerns similar to theirs.
That percentage is even higher – 1 in 4 – among those living with chronic disease, those who are caring for a loved one, and those who have experienced a significant change in their physical health, such as weight loss or gain, pregnancy, or quitting smoking.
I recommended looking to community groups such as LoveHeals, whose research showed that teen girls want to know who is giving advice about their birth control and STI-prevention options. So peer advisors were trained to create 90- to 180-second videos to let their own personalities shine through.
Raul Posas, of Metro TeenAIDS, shared his strategy for reaching Washington, DC-area teens. He does not take a step without asking a team of teen advisors what they think. Based on their feedback, for example, the organization’s recent bus ads featured campaigns written by teens along with a photo of that teen’s face.
Taking it to the next level
I had a little more time to present at the Federal HIV/AIDS Web Council meeting, so I closed with the following:
The tools are in place. The culture is shifting to expect that people have access to information and each other. There is mounting evidence that connecting patients with each other and with their data can have a positive effect on health outcomes.
But we are still at the early adoption stages. What will it take to bring this to the next level?
Here is a list of potential 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
- both the real and imagined threat of misinformation
- a lack of awareness that online communities, information resources, and other tools exist and can help make a difference in health outcomes
And here is a list of potential opportunities:
- caregivers who can help someone access online resources they may need to get better care – what we call second-degree internet access
- a life-changing diagnosis or other event can prompt engagement – and trigger the diagnosis difference
- mobile adoption is on the rise and seems to have an independent effect on people’s engagement online – triggering 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
- cultural changes that allow for the connection of silos
- the deputization of citizen spokespeople for evidence-based information, increasing the engagement of clinicians in spreading science
- mainstream press coverage, word of mouth, and clinical programs that help to spread awareness
At both the Federal HIV/AIDS Web Council meeting and the CommonHealth ACTION event, people came up to me to ask about the dangers of misinformation online. This seems to be a source of considerable anxiety among public health educators.
But I also heard many expressions of hope, excitement, and renewed commitment to take advantage of health information technology.
I’ll end with a quote from Natalie Burke, president and co-founder of CommonHealth ACTION: “We can’t live our lives in response to technology. We must also drive it forward.”
So funny – having just gotten off of a busy tweetchat today (#askTEDMED), as I read this post I found myself wanting to insert “+1!” time after time in your writing. Oops, blogs don’t work like that.:)
Awesomeness. My favorite takeaways on quick skim:
– Despite the concerns of paternalists, students actually “went to high-quality online resources, fact-checked what they found, and sought medical attention when necessary.” I wonder what it will take to persuade the establishment of this.
– “People who search the AIDS.gov site from a mobile device use much more specific terms than those who search from a desktop or laptop.” Wow: I’d love to know some specifics, to better understand this. (Dying to know, is it true for other health searches??)
– “networks online that we tap into when we need help or advice.” – Did you measure that specific to help or advice on health?
– Re the “diagnosis difference” – I understand this analytically, but I’d LOVE to see a visualization of it. I’m thinking of a Tuftean visualization, perhaps two pie charts (or one brilliant one?) showing the different proportion of “online-ness” for chronics and others, but then showing the “contributor density” as colored dots within the slice…. does that make any sense?
(In fact I’m imagining a Hans Rosling sort of animation, where we start with a foggy amorphous pile of dots, which drift apart into groups that reveal the actual pattern.)
– “I want to hear it from someone like me” sounds like the death knell of paternalism.
– Your list of roadblocks and opportunities. It’s a speech kit in a box.:)
My bottom line: Nobody can analyze today, nor plan a roll-out of behavior change strategies, without understanding this. Thanks.
I can answer some of your questions and will try to track down people who can answer the rest.
1) These were elite students, so while the audience was tickled to hear them cite high-quality online health resources, it was also clear that they represented the college-educated cohort, which fewer people worry about when it comes to gathering health info online. One student spoke up to point that out, in response to another question about how they manage privacy & security online — she sees different behavior in her peer group than she saw on yesterday’s panel.
2) The mobile difference is *fascinating.* Here’s the Pew Internet Project’s page listing all of our resources related to mobile:
And here’s a salient quote from our “Health Topics” report:
“Yahoo, for example, reports that “pregnancy,” “herpes,” and “STD” (sexually transmitted diseases) are among the top five searches performed on the mobile version of their site. These topics do not appear at all among the top five health searches for the non-mobile versions of either Yahoo or Google.”
3) No, we didn’t focus on health in the Facebook trust study, but rather on standard measures of emotional support, companionship, and instrumental aid. We also explored the relationship between using FB and civic engagement. I’m triangulating the connection to health, as I often do with Pew Internet’s more general findings.
4) I love your idea for a visualization to show the effect of living with chronic disease. I don’t know if our current data set would support such an analysis, but I’d be happy to work with someone to find out (anyone up for it? email me: sfox at pewinternet dot org)
5) “Someone like me” is powerful, particularly for some of the issues discussed at these two meetings: highly personal choices and behavior changes like persuading a partner to use a condom. There are limitations, which must be acknowledged, but this trend cannot be dismissed.
I should add that I didn’t even have to mention PatientsLikeMe since my co-panelist at the CommonHealth ACTION event, Arnaub Chatterjee of the office of the CTO of HHS, included a slide about their work.
6) Roadblocks & opportunities – yep, it’s my favorite conversation starter at the end of a speech. Kind of an FAQ that keeps growing each time I roll it out.
Yes, it’s fascinating to compare mobile vs. desktop search terms. In general, searches to the desktop site are about funding, statistics and HIV basics. Mobile users also search for basic HIV information, but the search terms are more specific (and explicit) about behaviors that might lead to HIV infection (e.g., can you get HIV from x or y?) It’s also interesting to note that mobile searches tend to be much more personal and worded as a question.
Happy to follow up with more details…
I liked this quote in particular: “The tools are in place. The culture is shifting to expect that people have access to information and each other. There is mounting evidence that connecting patients with each other and with their data can have a positive effect on health outcomes.”
I’m not sure I would call that the death of paternalism, as e-Patient Dave does: I know he would agree there ARE genuine experts. But it is a huge cultural shift towards participatory medicine. Experts can no longer be paternalistic.
It is interesting to me that you did not list accuracy and reliability of information as a barrier. Given the profit motive of some sites (see my recent post on HealthTap (http://onforb.es/z7nt4c) and the unproven validity of crowdsourcing, I think accuracy and reliability will be important issues.
Good work, Susannah!
I list “both the real and imagined threat of misinformation” as a roadblock, hoping that it covers accuracy & reliability of online health information, even if it is a shorthand summary of a huge issue.
Each one of these could be a post or speech on its own — we could each write volumes on “technology that is a pain to use,” for example. At the CommonHealth ACTION event, I met a pediatrician who had trained on one type of EMR and now has a fellowship at a different hospital where she has to learn a new EMR. The learning curve is so steep and the technology so kludgey that she has given up trying to involve parents in the co-creation of the record during the visit. Instead she takes paper notes and spends her evenings typing them into the online system. Her frustration was palpable. She just wants to help people get better AND create an online record that will persist, yet she is stymied by the technology. It reminded me of Abraham Verghese’s talk at Medicine 2.0 Stanford about how the patient is in danger of being displaced by a screen. You can watch a version of his talk on the TED site: http://www.ted.com/talks/abraham_verghese_a_doctor_s_touch.html
And thank you for linking to your HealthTap article. Note to everyone else: it’s a must-read, as I told Michael when we ran into each other in the lobby of the HHS building on Wednesday. Yes, it was another example of serendipity in my week!
Thank you so much for posting on your presentations and for synthesizing the appropriate research from Pew’s studies. I am particularly pleased to see communities of color pulled into the discussion of technology and health information. It seems like most mentions of communities of color in this context focus on the deficits: the digital divide, lack of access to health care providers, and health literacy problems. The “diagnosis difference” research shows the common interests all patients with chronic disease have to participate in their care and the data on mobile device ownership show a narrowing of the digital divide across all communities.
I wonder about the level of communication and connection and trust that communities of color have for connecting to each other for health and how is it different from the communities usually depicted. The hearing information from “someone like you” piece can be very powerful across racial/ethnic groups and I as I see it, a way to help increase health equity.
Communities of color are so often talked about in terms of a lack, a deficit, but the data shows that mobile is an area in which African Americans, Latinos, and other groups are ahead of whites in terms of adoption and usage. If we all agree that mobile is the future, then many people of color are living that future now. What an opportunity!
Also, to your point about trust: One of the students at the CommonHealth ACTION event talked about how, in the African American community, there is often mistrust of public health authorities. She didn’t mention specifics, but I have heard the Tuskegee Syphilis Experiment cited as a reason for this mistrust. More recently, Rebecca Skloot’s book, The Immortal Life of Henrietta Lacks, brought similar issues to the fore. The student on the panel said that peer-to-peer health care sounded promising to her, as a way to break down those traditional barriers. It’s also a way to leapfrog cultural competency issues – a video shot or an essay written by someone in a community, about a health threat or opportunity, can be more compelling than any government message. MetroTeen AIDS cited many examples of this approach.
There are several barriers to accessing communities of ”color’. These limiting factors also apply to any communities that fit poverty or near poverty metrics.
1.Lack of internet access due to limited assets, network design, and the limitations on data from carriers.
2.Smartphones require additional charges for internet access.
3.This cohort is probably the one that needs this service more than others. The incidence of chronic disease is higher, compliance is a challenge, and languages other than English may predominate. These include tagalag,spanish,vietnamese
4.Experience reveals that consumers resist using HIT or Health 2.0 for healthcare. They may use mobile apps downloaded to their smartphone for use.
5. Government may find it cost effective to subsidize these tools in a demonstration project to assess a return on investment. The benefit may be in better outcomes, better compliance, patient education, and reduced office visits and/or more timely and appropriate interventions.
Thanks, Gary – good stuff. I’m particularly interested in learning about strategies for reaching language minorities.
Yes the barriers are similar for communities of color which unfortunately greatly overlap communities with lower SES. But what is in the asset side of the ledger for participating in Health 2.0? As Susannah mentioned to start:
1. greater trust in information from peers
2. increased comprehension of messaging
3. building capacity within communities to provide information and communicate it
Focusing on these and other assets in ALL communities helps to build an infrastructure that isn’t electronic, but good old fashioned human connections and social support.
I am the lead admin at Crohnsforum.com, the largest online support group for people with Crohn’s Disease. Over 100,000 unique visitors found us in the last month alone. We’ve removed a lot of the roadblocks you list above and are continuing to improve in various areas. We’re getting out there but want to take it to the next level. Our question is, how do we get the health professionals involved? What do we have to provide them so that they can jump on board this e-patient and participatory health care movement?
Do you know about the C3N Project, based at Cincinnati Children’s?
They are trying to take patient and clinician engagement to the next level — and Crohn’s is one of the conditions they are focusing on.
We’d be very interested in telling you about the C3N project and the work of the ImproveCareNow network.
We would welcome your involvement. Why don’t you send us an email so that we can arrange a time to share what we’re doing with you.
Cultural competency came up as an issue at both events, so I’ll highlight this study:
Cultural influences on seeking quality health information: An exploratory study of the Korean community
(Thanks to Laura O’Grady for posting it on Twitter. Check out her work if you’re not familiar wit h it: http://lauraogrady.ca/)
Here’s why I love being part of the online community of health geeks:
I re-tweeted a great comment about this post from Myrna Morales (@SeerGenius):
The question isn’t getting the technology in the hands, the question is “are you willing to design for the user”.
And received this stellar reply from Sarah Lewthwaite (@slewth):
Aversive design behaviours? Some insights from Disability Studies (See section 3)
Check it out – very interesting stuff!
Thanks Susannah, yes very interesting to consider the approaches to increasing availability of technology and making what is found through that technology actually *useful* to those most affected by chronic disease and poor health outcomes.
“Designing for the user” needs to start, as the paper from the disability studies perspective highlights: by taking a community based approach and engagement of users to design and develop. No back end adjustments to make it fit!
As a social worker in pediatrics I have worked with many teens and young adults who have chronic illnesses, many of whom are from communities described here.
In some ways, like other “kids” with chronic illness, their conditions have exposed them to opportunities not shared by peers, and many are
highly motivated to influence others who share
Many have been using on-line resources like Starbright and disease-specific sites for years in hospital settings, and meeting at places like summer camps and social experience groups that exist for youngsters with with chronic illnesses.
I wonder if these settings could be utilized
to assess preferences and needs for use of
new technologies and engage a generation with a
vested interest in developing new approaches?
Thanks, Mindy! That is a really interesting suggestion. As a researcher I know it can be difficult to recruit focus-group participants who represent rare or minority populations — a camp for kids with certain chronic conditions would be a perfect set up.
CommonHealth ACTION published a report based on their February event (PDF):
Thank you Susannah! Very refreshing to read the perspectives of the “audience” for these health messages and what their suggestions are.
I’m particularly interested in learning about strategies for reaching language minorities.