[Report] How Scientists Engage the Public

From the 15 February 2015 Pew Report

American scientists believe they face a challenging environment and the vast majority of them support the idea that participation in policy debates and engagement with citizens and journalists is necessary to further their work and careers.

A survey of 3,748 American-based scientists connected with the American Association for the Advancement of Science (AAAS) finds that 87% agree with the statement “Scientists should take an active role in public policy debates about issues related to science and technology.”Just 13% of these scientists back the opposite statement: “Scientists should focus on establishing sound scientific facts and stay out of public policy debates.”

This widely held view among scientists about active engagement combines with scientists’ perspectives on the relationship between science and society today in several ways:

• Most scientists see an interested public: 71% of AAAS scientists believe the public has either some or a lot of interest in their specialty area.
• Many scientists see debates over scientific research findings in the media:53% of AAAS scientists say there is a lot or some debate in the news about their field.
• A sizable share of scientists believe careers can be advanced by media coverage of their work and social media use: 43% of AAAS scientists say it is important or very important for scientists in their specialty to get coverage of their work in news media, up from 37% who said that in a 2009 survey. Some 22% described it as either “very important” (4%) or “important” (18%) for career advancement in their discipline to promote their findings on social media such as Facebook or Twitter. Still, a majority of AAAS scientists say it is not too or not at all important for career advancement to have their research covered in the news (56%), and 77% say it is not too or not at all important for career advancement to promote their findings on social media.
• At the same time, most scientists believe that science news coverage can pose problems for science: 79% of scientists believe it is a major problem for science that news reports don’t distinguish between well-founded and not well-founded scientific findings. Further, 52% of scientists say that simplification of scientific findings is a major problem for science in general.

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• Public and scientists express strikingly different views about science-related issues
• These are the 2 huge problems stopping scientists from doing their jobs

[Pew Report] Most View the CDC Favorably; VA’s Image Slips

From the 22 January 2015 Pew Center post

More Partisan Opinions of the EPA, CIA

The public continues to express positive views of many agencies of the federal government, even though overall trust in government is near historic lows. Large majorities express favorable views of such government agencies as the Centers for Disease Control and Prevention (CDC), NASA and the Defense Department.

In fact, favorable opinions surpass unfavorable views for seven of eight government agencies tested – the IRS is the lone exception. In a survey last February, however, just 24% said they could trust the government in Washington always or most of time. (See this interactive for more on trust in government.)

….

 

More at http://www.people-press.org/2015/01/22/most-view-the-cdc-favorably-vas-image-slips/2/, including tables on NSA, IRS, and VA; views based on party affiliation and Tea Party Republicans

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• Most View the CDC Favorably; VA’s Image Slips
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[Reblog] A field guide to The Diagnosis Difference (with a request from the the blogger, Ms. Fox for responses)

From the 26 November 2013 posting at Susannah Fox – Internet geologist**. Health care gadfly. Community colleague.

The Pew Research Center released a report today on people living with chronic conditions: The Diagnosis Difference.

Policy makers, patient advocates, entrepreneurs, investors, clinicians — all health care stakeholders — can use the data to map the current landscape. There are still barren patches, where people remain offline and cut off from the resources and tools. But there are lush valleys, too, where engagement and change is happening.

I see e-patients as the guides to those valleys since unless you are living with chronic conditions — or love someone who is — you don’t see that side of the internet. So here’s my request: provide your evidence. Show what you have learned.

First, a quick summary of the report:

1. 45% of U.S. adults have a chronic condition (For some, that’s a revelation and there is still a considerable distance to go before that reality is widely known. For you, that’s not the news. That’s just proof that we have a sample that matches the CDC’s estimate and you can therefore trust the data.)

2. 72% of adults with chronic conditions have internet access, compared with 89% of U.S. adults who report no conditions. There are digital divide implications to this because having a chronic disease is an independent factor in predicting if someone has access — apart from things like age, income, and educational attainment.

3. Clinicians are central resources. People living with chronic conditions are more likely than other adults to consult a clinician when they need help or after they Google for a diagnosis.

4. Self-tracking is a massive activity, particularly for people living with 2 or more chronic conditions, and this group is more likely to use formal means, not just tracking in their heads as many “well” trackers do. For example, 41% of health trackers who report having one or more chronic conditions use pencil and paper and 14% of this group uses a medical device such as a glucometer.

5. Living with a chronic condition has an independent, significant effect on behaviors that are often described as signs of consumer health engagement, like reading up on drug safety, medical treatments, or delivery-of-care reviews. Internet users living with chronic conditions are more likely than others to read or watch someone else’s commentary or personal experience about health or medical issues online.

I want to stop a moment and give some examples of what that might look like.

• Someone living with cancer might follow Lisa Bonchek Adams’s blog, learning abouthow to prepare for having a port placed.
• Someone living with diabetes might check out Diabetes Mine to learn how other PWDs (people with diabetes) rank tech tools and quality of life measures.
• Someone living with a heart condition might read Carolyn Thomas’s blog to gain reassurance that their post-diagnosis PTSD is not in their head.
• Someone living with a lung condition might learn from Propeller Health about why they, in particular, should get a flu shot.
• Someone living with high blood pressure might search Inspire.com for insights on how to keep it under control.

And now we come to the category that personally means the most to me since I’ve spent time in rare disease communities: the 16% of U.S. adults who are living with “other conditions,” like rheumatoid arthritis, epilepsy, or fibromyalgia (to name a very few of thousands). They are hardly ever in the mainstream spotlight. They may have awareness days or weeks or months that their communities honor, but you won’t see the National Football League wearing their colors.

The internet is their spotlight. A blog, a hashtag, a YouTube channel, or a Facebook group can be their lifeline. Yes, they consult clinicians like everyone else, but those who are online know that the path to health — for them — is often found in the advice shared by someone like them or the person they are caring for. The feeding tip that will help their baby get the nutrients she needs to grow. The heating-pad tip that will ease their painsomnia.

As I wrote at the top, unless you are living with chronic conditions — or love someone who is — you don’t see that side of the internet. So let’s open up the landscape.

Please post in the comments what you have learned online from a fellow spoonie, from a fellow caregiver, from a fellow traveler along the path to health. What would you tell someone just diagnosed with your condition to do, especially in tapping into the resources available online? When someone asks you, maybe over Thanksgiving, about why you spend time online, what will you say?
Post it here [at Samantha Fox’s blog] . Links to blogs, videos, tweets — all are welcome.

Thank you.

** From Susannah Fox’s About Page (Internet Geologist definition)

I was at a cocktail party, struggling to describe in just a few sentences what I do for a living, when my friend Paul Tarini broke in and said, “You’re an internet geologist. You study the rocks, you don’t judge them.” Exactly. I study patterns in the online landscape and provide data so people can make better decisions about the social impact of the internet.

My other favorite description of the kind of research I do is “nowist” (meaning: instead of being a futurist, understand what people are doing now and be alert to changes).

“Health care gadfly” describes my role outside the fray, as an observer, hopefully contributing to the public conversation in a useful way.

Ted Eytan coined the phrase “community colleague” for people who collaborate by default. That’s me. My work is enriched by the health geek tribe. I can’t imagine doing the work I do without the help of my community.

Related articles

• How US adults with chronic health conditions share health information online? (gadgetrends.ro)
• Pew Report: Chronic Health Conditions Impact 45% Of American Adults, Contribute To 75% Of Health Care Costs (medicaldaily.com)
• The Diagnosis Difference: Those with Chronic Conditions Have Different Online Habits (drhiphop85.com)
• Increased frailty associated with childhood cancer survivorship (2minutemedicine.com)
• Chronic Conditions and Medical Complexity (rehabcare.com)
• What we see and what we cannot see. What we share and do not share. And why. (snideeffects.com)
• Ill workers ‘feared losing jobs’ (standard.co.uk)

[Article Summary] 1 In 3 Americans Uses Internet To Help With Diagnoses



From the 15th January 2013 article at Medical News Today

A nationwide survey ***of US adults finds that 1 in 3 of Americans say they have used the internet to help them diagnose a medical condition, either for themselves or someone else. But, when asked who they turned to for help with a serious health issue, either online or offline, the majority said they turned to a doctor or other health professional…

…when these “online diagnosers” were asked who they turned to for information, care or support the last time they had a serious health problem, either online or offline:

• 70% said they got it from a health professional,
• 60% turned to family and friends, and
• 24% said they got it from others with the same condition.

When the survey asked online diagnosers if the information they found online had led them to think they needed to see a doctor, 46% said yes, while 38% said they could take care of it themselves and 11% said it was a case of both or something in between.

Read the entire article here

Related articles

• Internet Is First Stop for Many Ill People, Study Finds (mashable.com)
• 1 in 3 adults search online for medical diagnosis (cbc.ca)
• ‘Doctor Google’ Isn’t Replacing Actual Doctors Any Time Soon (betabeat.com)

***The full Pew Internet report Health Online 2013 may be found here

Peer-To-Peer Health Care

Peer-To-Peer Health Care reports on the use of online connections, especially by those with chronic conditions,  to supplement professional medical advice.

This February 28 2011 report is published by the Pew Research Center, a “nonpartisan “fact tank” that provides information on the issues, attitudes and trends shaping America and the world. It does so by conducting public opinion polling and social science research; by analyzing news coverage; and by holding forums and briefings. It does not take positions on policy issues.” [From the Pew Research Center About Page]

Some excerpts from the report

• Many Americans turn to friends and family for support and advice when they have a health problem. This report shows how people’s
  networks are expanding to include online peers, particularly in the crucible of rare disease. Health professionals remain the central
  source of information for mostAmericans, but “peer‐to‐peer healthcare” is a significant supplement.
• One in five internet users have gone online to find others like them.Eighteen percent of internet users say they have gone online
  to find others who might have health concerns similar to theirs.
• In the moment of need, most people turn to a health professional for information, care, or support.  When asked about the last time they had a health issue, 70% of adults in the U.S. say they receivedinformation, care, or support
  from a health professional.