The biggest merger you didn’t hear about yesterday

If you haven’t read it yet, please do. It is damn good and damn right. Sorry. It’s just that I feel like the frog in the pot who just saw the thermometer.

As I often do, I shared my feelings on Twitter:

Let’s all work on stuff that matters today. Me: caregivers. You?

— Susannah Fox (@SusannahFox) May 22, 2013

Eight people replied with what they’re working on:

• OK City relief efforts
• Helping people become more informed, confident healthcare decision makers
• Building Community
• helping people better understand high-deductible health plans
• today for me it’s also caregivers, in a way. Spoke to providers this week who feel burnt out. That’s a big problem!
• Sick minority children.
• eHealth equity

Thank you! Let’s keep working on stuff that matters and paying attention to stuff that matters. Ideas for how to do that? Please comment.

Erin Moore, the mom-warrior who created that video, also wrote this essay: Are patients a distraction? I think not…

Watch, read, cry, be inspired. I sure am.

(Not an actual photo from my friend's wedding, but similar weather.)

In 2006 I was a bridesmaid for my friend Steph up in Maine. It poured rain to the point that the bridesmaids wore garden clogs and the groomsmen wore waders, but we didn’t care. It was a beautiful wedding.

During the party, a woman asked to be introduced to me. She was a friend of Steph’s mom and was tickled to see “Susannah Fox” listed in the program since that is her grand-daughter’s name, too. I happened to go to college with a woman who shares my name, so it wasn’t the first time I’d encountered this, but I soon found out that this Susannah Fox lives in Washington, DC (just like me), majored in anthropology (same), and was pursuing master’s degree studies about technology’s impact on society, particularly as it relates to health (!!)

Susannah M. Fox

When I returned home to DC, Susannah and I hit it off on the phone and have kept in touch over the years. I loved hearing about the adventures of this younger, more advocacy-oriented Susannah Fox. She finished her master’s degree and got a job as the director of development at the Capital Breast Care Center, which provides breast cancer screening regardless of a woman’s ability to pay, and now works at Physicians for Social Responsibility. I was so happy to hear that she had found love, marrying a man with the last name Fox (no relation to either of us) and now she has a baby girl.

She had registered susannahfox.com while she was in grad school, as part of her job search, but she was now so busy that she didn’t update the site very often. When I shared with her that I was working on a personal project, bringing together all the wisdom of patients and caregivers who had shared their stories with me over the years, she generously gave me the domain name so I could launch this blog.

So: thank you, Susannah!

We are in the process of revising our patient forms and this may be a good time to add 1-2 questions that might best assess e-health utilization for the purposes of future data retrieval. Can you share examples of the questions I can use?

My reply is below, shared in the spirit of public Q&A so other people can contribute and we can learn together.

Our most recent health survey questionnaire is available on our site, along with the topline data so you can see how the national sample answered the questions:

September 2012 health survey data

Some useful questions include:

Q8      Still thinking about the LAST time you went online to look for health information… How did you begin looking? Did you start… [READ 1-4 IN ORDER]

Based on online health seekers [N=1,741]

(Note: this trend hasn’t shifted in a decade, but I wonder if it would be different for your patient population?)

Q12     Have you ever gone online specifically to try to figure out what medical condition you or someone else might have?

Based on online health seekers [N=1,741]

(Note: 59% of online health seekers translates to 35% of U.S. adults)

Another line of questions which might be useful to you:

Q24     Now thinking about your health overall… Do you currently keep track of your own weight, diet, or exercise routine, or is this not something you currently do?

Q25     How about any other health indicators or symptoms? Do you happen to track your own blood pressure, blood sugar, sleep patterns, headaches, or any other indicator?

CARE10 Turning again to the UNPAID care you provide to family, friends or others… Do you happen to keep track of any health indicators or symptoms for any of the people you care for?

Based on all caregivers [N=1,171]

Q26     Thinking about the health indicator you pay the MOST attention to, either for yourself or someone else, how do you keep track of changes? Do you use… [READ 1-6]

Based on those who track a health indicator for themselves or others [N=2,183]

Note: Total may exceed 100% due to multiple responses.

(Note: the series goes into more detail about frequency, with whom they share the data, impact of tracking…)

The questionnaire available online is only our English-language version. Below are the same questions in Spanish (the notes to interviewers are still in English):

ASK ALL ONLINE HEALTH SEEKERS (Yes (1) to any item Q6a-l):

Q8      Siga pensando en la ÚLTIMA vez que buscó información de salud en línea. ¿Cómo comenzó a buscar? ¿Comenzó… [READ 1-4 IN ORDER] {modified PIAL June 2001}

1        En un motor de búsqueda como Google, Bing o Yahoo

2        En un sitio que se especializa en información de salud, como WebMD

3        En un sitio más general como Wikipedia, que contiene información sobre toda clase de temas, O

4        En una red social como Facebook?

5        (DO NOT READ) Otro (ESPECIFIQUE)

8        (DO NOT READ) No sabe

9        (DO NOT READ) Se negó a contestar

ASK ALL ONLINE HEALTH SEEKERS (Yes (1) to any item Q6a-l):

Q12    ¿Se ha conectado específicamente para intentar determinar qué condición médica podría tener usted o alguien más? {new}

1        Sí

2        No

8        (DO NOT READ) No sabe

9        (DO NOT READ) Se negó a contestar

ASK ALL:

Q24    Ahora piense en su salud en general. ¿Actualmente hace un seguimiento de su propio peso, dieta o rutina de ejercicios, o no es algo que haga actualmente? {modified from Sept 2010 Q24-item E}

1        Sí, hace un seguimiento

2        No, no es algo que el encuestado haga actualmente

8        (DO NOT READ) No sabe

9        (DO NOT READ) Se negó a contestar

ASK ALL:

Q25    ¿Qué sucede con otros indicadores o síntomas de salud? ¿Hace un seguimiento de su propia presión sanguínea, azúcar en sangre, patrones de sueño, dolores de cabeza o algún otro indicador? {modified from Sept 2010 Q24-item F}

1        Sí

2        No

8        (DO NOT READ) No sabe

9        (DO NOT READ) Se negó a contestar

ASK ALL CAREGIVERS (CARE2=1 OR CARE6=1):

CARE10  Retomemos el tema del cuidado SIN PAGO que proporciona a un familiar, amigo u otras personas… ¿Hace un seguimiento de algún indicador o síntoma de salud para alguna de las personas que cuida? {new}

1        Sí

2        No

8        (DO NOT READ) No sabe

9        (DO NOT READ) Se negó a contestar

ASK IF TRACK HEALTH FOR SELF OR OTHERS (Q24=1 OR Q25=1 OR CARE10=1)

Q26    Piense en el indicador de salud al que presta MÁS atención, ya sea para usted o para alguna otra persona, ¿cómo hace un seguimiento de los cambios? ¿Utiliza… [READ 1-6; ALLOW UP TO THREE RESPONSES] {new}

1        Papel, como un cuaderno o diario

2        Un programa de computación, como una hoja de cálculo

3        Un sitio web u otra herramienta en línea

4        Una aplicación u otra herramienta en su teléfono o dispositivo móvil

5        Un dispositivo médico, como un medidor de glucosa

6        ¿O simplemente hace un seguimiento mentalmente?

7        (DO NOT READ) Otro (ESPECIFIQUE)

8        (DO NOT READ) No sabe

9        (DO NOT READ) Se negó a contestar

And again, the summary of the Pew Research Center’s work in this area can be found here: Pew Internet: Health

/end of my reply/

Now, if you are a patient or caregiver, what questions would you like to be asked about your use of online health resources? What would you like to tell your clinicians about how you integrate information and communications technology into your daily life — or your pop-up medical emergencies?

If you are a clinician, do you include questions about internet use on your intake forms or in some other form? What do you ask about? What have you learned?

Please share in the comments below.

A few posts to contemplate on Mother’s Day…

Mothering Cal: What I learned from parenting a terminally ill child, by Maria Kefalas

Twin Tuesday: Breastfeeding Twins, by Danielle Jones

In sickness and in health (Her mother’s perspective on reading Lisa Bonchek Adams’s blogposts about metastatic cancer), by Rita Bonchek

I love being a working mom, by Wendy Sue Swanson

Oh, and put down your mimosa or you’ll spill it:

1. Expect clinical trial participants to share news with their networks. Plan accordingly.
2. Make your information attractive and share-able where people already are, on Facebook, Tumblr, Pinterest, etc.
3. Find your local Lady Gaga.
4. New Coke is a model for what not to do when engaging a community.
5. “Re-sexify” a repetitive message because there are some things you can never say enough.
6. Integrating a new social media tool is like having a new employee, it’s that much of a productivity hit.

I participated in the National Institutes of Health’s HIV/AIDS Clinical Trials Networks Communications Symposium on May 9, 2013, sharing Pew Research data about internet and cell phone use across the globe and, in particular, how people in the U.S. gather and share health information, online and offline.

My notes from the discussion are below, but I make no claims about them other than I wrote down stuff I was curious about or thought would have universal application:

“The moment you tell one participant, the race is on to tell the rest. They want to hear the news from clinicians.”

The first presentation was a riveting tick-tock of how the HVTN 505 HIV Vaccine Regimen Study announced that they were ending the administration of injections. ”Dear Participant” letters were sent out and almost immediately posted on personal blogs, Twitter, and the clinical trial wiki. Unfortunately the wiki update by a participant contained an error — “the joy and the discomfort of openness.” There was no “media” leak in the traditional sense, but there was a wiki leak (yes, that got a laugh), so they stuck with the planned schedule and did not rush out the press announcement because it was contained within the community.

Lesson: Make rapid response to participants part of the study protocol. Expect people to share with their networks. Monitor every channel and have multiple contingency plans.

One voice, many inflections.

Amy Ragsdale, the meeting organizer, then introduced me and it was like getting on a high-speed elevator to the top of the Empire State Building: we went from a street-level case study to a global view of the health communications landscape. Amy came up with the title for my talk, which I love since it captures the main idea of public health messaging: one voice (ie, the facts, the best science available) many inflections (help and encourage people to share those facts in their own ways, with their communities):

I think one of the key take-aways from my talk, based on the discussion, was that HIV clinical trial communications about treatment should still focus on outreach to clinicians since Pew Research data show that MDs and RNs are still the #1 source for that type of information. But communications experts can also take heart in the fact that they can use the “many megaphones” approach when it comes to outreach, education, trial recruitment, and other activities.

Amy shared an important distinction during the meeting and captured it in a follow-up email:

The HIV prevention world confronts different challenges and opportunities than the treatment world. In prevention, we reach out to those who generally don’t think of themselves at risk and don’t have the immediate need of clinical care. Health messaging to “healthy” people requires a different approach – especially when engaging them around recruitment into a trial.

That is a significant challenge that I’d love to crowd-source a bit — if you have ideas or amplifications to share, please do so in the comments below.

A first step is to be sure that your information is share-able on the platforms your target audience is using. Here’s a table I should have included in my slides, but didn’t:

(Note: this is why I love social media — the conversation is never over.)

Meeting participants were disappointed that I didn’t have data from East or South Africa to share, but my colleagues in the Pew Global Attitudes Project tell me that we will have that data soon. Meantime, we heard stories about fieldworkers in Zimbabwe, Malawi, Zambia and other countries trading Facebook messages, not email, so there are indications that the social networking wave affects those countries’ health communications, too.

I wish that I had emphasized the “listen more than ask” aspect of the new media (and new research) landscape, but I think the other presenters hit those points better than I could have, anyway. This is a group of people with deep ties to both research communities and the patient/caregiver communities.

Joe Camel used to own the airwaves and we had few tools to combat his hold on kids. That’s no longer true.

That was a comment from one of the participants, along with her observation that there are now many voices, many airwaves, many megaphones. A tweet from Lady Gaga — or the Lady Gaga equivalent in a micro-community — can be influential. Find the Lady Gagas in your community. Leverage what your community is already doing, for example, the Asian & Pacific Islander American Health Forum created a fun video about open enrollment that other organizations are now using:

However, it’s difficult to predict what will be hit. For example, a rectal microbicide how-to video may be a dud in one country, like Peru, but a hit in another, like Thailand. Is it because of faster internet connections? Higher interest? Better outreach on-site? It’s unknown, so the current strategy is to continue to generate accurate, compelling messages and test them in different markets, in different ways.

Advertising about a clinical trial is considered recruitment, which is considered informed consent.

There was a technical discussion about clinical trial recruitment and when to involve an  Institutional Review Board (IRB). The bright-line rule: no “ask” means no need for IRB approval. But social media introduces complexity: currently, a piece of paper triggers IRB review. If you read all the contents of that piece of paper to someone but don’t hand it to them, no IRB approval is needed.

New Coke is a model for understanding how people will integrate a clinical trial protocol into their lives.

Coca-Cola missed that there is a culture of Coke drinkers, just as clinical trial investigators  can sometimes miss the culture of sexual practices and preferences in the target population. It wasn’t that the product was so bad, but rather, the company did not respect their audience enough to talk with them first and understand how they might need to change the protocol.

Lesson: Engage the community early. Have community members on the research team.

Community-level messages about HIV clinical trials should be simple, straightforward, and sexy.

It is a significant challenge to balance enthusiasm, expectations, and outcomes. How to communicate about a clinical trial that hasn’t cured HIV, or even solved a problem, but at least has moved the field forward? Maybe: “It is a good thing the trial was stopped because it means we learned something and are ready to share.” Redefine failure, help people understand basic research literacy. Sell, but don’t oversell, hope. “Re-sexify” a repetitive message because there are some things you can never say enough.

Some of these lessons can be translated to press strategy. Reporters who want to cover a clinical trial as a “win” or a “loss” need to be educated about the scientific process of discovery.

“Integrating a new social media tool is like having a new employee, it’s that much of a productivity hit.”

This was a quote from the discussion at the end of the day, after we heard a smart presentation about evaluating the return communications investments of social tools along the lines of site recruitment, scientific publications, lay press, public health interest, etc.

The “something shiny” syndrome is familiar to everyone, which is why I appreciated the discussion about how to leverage existing content and make it easy to share. You don’t have to be on every platform; you want your information to be available there. I likened it to developing new muscles and using them in different ways — the blog muscle becomes the Tumblr muscle becomes the Whatever’s-Next muscle. Make it easy to share. In other words: one voice, many inflections.

All in all, it was a day devoted to working on stuff that matters and I was honored to contribute.

What if the big data vision of ubiquitous surveillance comes true and people are monitored — and helped — to a much greater degree than they are now?

No answers, just questions, but I thought I’d share. What do you think?

An aside: I love how MIT Technology Review lists “upcoming articles” at the bottom of their Big Data Gets Personal feature. I may steal that for upcoming research reports and blog posts (no dates attached, just ideas I know I’ll write about).

We are working on an innovation concept paper to a local foundation and would like to explore how to better use social media and SMS at youth-focused sexual health clinic. We need to be able clearly articulate the benefits of social media and SMS for health care access for youth and young adults. I hope you can provide some resources that may be able to help.

I began with basics:

Pew Internet: Teens

Pew Internet: Health

Pew Internet Trend Data: Adults

Pew Internet Trend Data: Teens

Digging deeper:

The most recent report on Teens and Technology and the most recent in-depth report on Health Online.

And finally, some blog posts relating most closely to your inquiry:

Going Viral Against HIV

The State of New Media and HIV

Health, Technology, and Communities of Color

You might consider texting as a mode of communication – don’t miss the discussion in the comments on this post:

Is there hope for SMS health alerts?

(Now it’s your turn: what would YOU share? What advice do you have for this newcomer to social media? Comments are open.)

But that’s E-patient Dave, seeing things that nobody else sees and, in this case, making up words like “boogloo” (Bing + Google + Yahoo).

As he writes: 81% of U.S. adults use the internet and 72% of them have sought health information online in the past year (see: Pew Internet: Health). This is not a sign of the health information apocalypse, he and Danny Sands say, but a sign of a groundswell. What if, instead of dismissing people’s interest in doing some quick (or in-depth) research online, clinicians gave them some guidance? That’s their advice: “If patients don’t know how to do the Boogloo safely, don’t stop them from engaging — teach them how…The solution is not to restrict and constrain. Empower the people: enable, and train.”

If you’re interested in getting up to speed fast on patient engagement, Let Patients Help is your passport.