Students were asked to review readings and websites and submit questions in advance, many of which Susannah Fox addressed in her remarks:
The Pew Internet Project studies the social impact of the internet. We have been tracking online life since the year 2000, when 46% of American adults had access to the internet and only 5% of homes had broadband connections.
It was a pre-Flickr, pre-YouTube, pre-Facebook online world back then. Now three-quarters of adults go online, two-thirds of U.S. households have broadband access, and the internet has become fast, mobile, and social for a lot of Americans.
In 1994, a man facing a treatment choice had to impersonate his doctor in order to gain access to a medical journal article which described the procedure. It was shocking to his doctor that he would want to know everything he could about his options before making a decision. It’s like a ghost story of the pre-internet age, but it’s true.
In December 2001 the American Medical Association put out a press release suggesting that Americans make a New Year’s resolution to “trust your physician, not a chat room” since the information found online puts “lives at risk.”
Of course most people ignored that advice and flocked online for health information, just as they ignored the advice of the recording industry and flocked to music downloading sites. Gathering and sharing information online and connecting with people of like interests became the new normal.
The internet created a way for people to pool knowledge and resources – and e-patients, often desperate to save their own lives, barged right in and set up shop.
In 2002, the Pew Internet Project asked internet users to write essays about how they connect to online health resources. We heard from people who used eBay to buy hard-to-find home medical equipment. We read about old-school bulletin boards and listserves which serve as lifelines for people with rare diseases and conditions. We heard about how people participating in clinical trials found each other online, or as one e-patient wrote, “we are lab rats tapping out messages on the bars of our cages.”
Back then the internet was a dial-up, stationary, information vending machine and people were already using it to better their health.
Now, the internet is a mobile, social, information and communications appliance that fits in your hand. 80% of adults between the ages of 18-29 go online via a mobile device, compared to just 16% of adults age 65+. When we include mobile devices in our definition of the internet user population, differences between white and African American adults disappear.
That’s my first piece of advice: Celebrate change. Embrace any new technology you find useful. Don’t be the AMA, railing against the internet because it was breaking the traditional model of “doctor knows best.”
But don’t forget about the people who don’t get it yet, who may not want to get it, particularly our elders. Honor their experience and try to understand it since we’re all headed that way.
My grandfather, who died at age 88, once told my dad that he was shocked every time he looked in the mirror. He still thought of himself as 18 years old, the year he started college. Help your elders with technology, if they need it. Or ask them to help you if they are anything like my grandmother, who died at age 96 and a half, a daily internet user. Her last words were, “Erase my email.”
And don’t forget that, some day, you might be confronted with a technological advance you aren’t ready for. There is always a new generation coming up behind you.
Clay Shirky, who is communications professor at NYU, tells a story about a little girl who, when watching a movie at home, jumped off the couch and starting rooting around in the cables behind the TV. When asked what she was doing, she replied, “Looking for the mouse.”
Shirky’s conclusion is that four-year-olds know that a screen that ships without a mouse ships broken. Media that is targeted at you but doesn’t include you may not be worth sitting still for.
That is where most health care is these days, stuck in the broadcast world when it could be transformed and transformative. E-patients know that health care that is targeted at you but doesn’t include you may not be worth sitting still for. As e-patients are “looking for the mouse” in health care, I’d like to suggest that one possible answer is the concept of participatory medicine.
Participatory medicine is a cooperative model of medical care that encourages and expects active participation by all involved parties as an integral part of the full continuum of care.
Participatory medicine acknowledges that it’s not just patients who are looking for the mouse in health care. Doctors, nurses, hospital administrators, and other health care professionals are all looking for the mouse, too.
Reforming health care is too big for most people to grasp; creating spaces for participatory medicine is not. For example, e-patients are already experts at finding and sharing information online. When I talk to people about my research, I often hear about how they are worried about bad or false information being passed around online. That was a question from one of the sections, in fact. My answer: Flood the market with good information. Deputize e-patients with the best data. Make it easier for people to find and share the right information. Don’t hide the best information behind a subscription wall. Do publish in HTML or XML instead of in PDFs. Do open your site to comments or provide a way for people to get in touch with you. Do get top executives to participate, not just observe, so they can create policies which reflect the realities of today’s technology, not their memory of how it was 5 years ago or their fear of it.
My other plea is for evidence: Clinical trials to show the power and the pitfalls of online health resources.
I have two examples – the first is a clinical trial conducted in Boston showing how text messages can increase treatment adherence. The Center for Connected Health conducted a randomized trial in 2008 using text messaging to send a daily weather report and reminder to apply sunscreen. The control group did not receive any reminders – just a tube of sunscreen. Each tube had a monitor strapped onto it so every time the cap was removed, an alert was sent back to the researchers. Study participants who received text reminders applied the sunscreen an average of 56% of the time, compared with the control group, which had a mean daily adherence rate of 30%.
The text messages were nothing fancy, just a weather report and a reminder to apply sunscreen. But they increased adherence. What else can be sent via text messages? How about appointment reminders? How about air pollution alerts?
Those of you who had time to read my blog saw my post, “What’s the point of Health 2.0?” And a couple of you had questions about Darthmed’s challenge to use simple, basic interventions to change health outcomes in the U.S. instead of creating fancy, interactive tools. I understand what he’s saying and agree. I’ve also heard people say that the Dept. of Agriculture has more to do with Americans’ health than the Dept. of Health & Human Services.
How many of you have heard of Michael Pollan, who wrote In Defense of Food and Food Rules? His answer to all our diet worries is summed up in seven words:
Eat food. Not too much. Mostly plants.
The New York Times held a Seven-Word Wisdom contest . Here are my favorite entries:
Eat pie. Very good pie. Not often.
Call Mom. Let her talk. Don’t argue.
Make promises. Don’t break them. Find loopholes.
In the spirit of Michael Pollan’s diet wisdom, I think we should look at what technologies are widely available and leverage them. One of you asked, What’s the role for doctors in this new era? They are central. Eight in ten adults turn to a health professional when they need medical advice. Six in ten adults go online for health information. 85% of American adults have a cell phone.
Patients want doctors to lead them to better health, but as coaches. Health professionals could learn a lot from watching what patients are doing online. And cell phones are an incredible opportunity to reach a diverse population.
So here’s my Seven Word Wisdom:
Recruit doctors. Let e-patients lead. Go mobile.
My second example comes from PatientsLikeMe, a social network for people living with chronic conditions, a site which was also part of your suggested reading for this week.
A survey of HIV community members on PatientsLikeMe found that two-thirds of respondents said they are more knowledgeable about risks and benefits of a “treatment holiday” because of what they have learned from other users on the site. How many people know what a “treatment holiday” is? It’s the idea that you should give your body a break from your medications every once in a while, which might sound good, but has potentially dire consequences for some conditions, such as HIV and diabetes.
Seven in ten survey respondents said using PLM has increased their interest in results of tests ordered by the doctor treating their HIV. That’s because many of them are posting the test results online, comparing them to other patients to see how they are doing. These patients are under the care of health professionals, but exchanging data, insights, and information to take better care of themselves.
PatientsLikeMe is an example of a small website that provides in-depth data on a limited number of conditions. Someone in the class asked that I elaborate on the blog post I wrote about Google privileging big sites over small sites, and whether there are issues of accuracy, relevance, and efficiency. First, I need to define my role: I’m like a geologist: I study the rocks, don’t judge them. I can’t say whether Google is doing the right thing or the wrong thing by guiding people to big sites. Also, the answer is unclear because it depends on the context of the search being performed.
I attended a day-long meeting with all the federal agencies concerned with HIV and AIDS. The director of AIDS.gov described how he noted that most people landing on their site arrived after a general search about high-risk behavior. They may have engaged in some behavior the night before which made them worry about their risk for HIV. Is AIDS.gov the right source for that person? Further, would a general-interest site like WebMD be the right choice for someone living with HIV, already on a treatment path, with advance knowledge of their disease? Do people need consumer-strength information about their condition? Or do they need industrial-strength information, which can come from both health professionals and from peers?
Looking at Pew Internet’s national data, 41% of e-patients have read someone else’s commentary or experience about health or medical issues on an online news group, website, or blog. When I talk to health advocates, whether at the CDC or a non-profit or a dot-com, I tell them about this social life of health information and ask: How are you helping people to spread your message? There is so much opportunity for better design, more data liquidity, and just plain useful technology in the fight against misinformation.
My next report focuses on people living with chronic disease. The Pew Internet Project and the California HealthCare Foundation conducted a national telephone survey, asking about the following five chronic diseases: high blood pressure, lung conditions, heart conditions, diabetes, and cancer.
One-third of adults in the U.S. say they are living with at least one of those five conditions and one in ten say they have two or more.
The median age for adults living with two or more chronic conditions is 63, compared with the median age for the general adult population: 45. This age gap accounts for many of the differences between the two groups in terms of technology adoption and use.
Once online, however, all adults are equally likely to use the internet to gather health information.
My favorite two questions in the survey ask about the impact of online health resources. Has the internet helped or has it harmed? Because I wonder: What does it all mean if it doesn’t make a difference in someone’s life?
I invite you to think about how you can move the needle on this measurement of the internet’s impact on people’s lives. What resources can be deployed to help people living with chronic disease? How are you going to help them? In what ways can media and medicine be deployed to make a difference?