Why this matters: Data quality is important, and it’s not guaranteed.

As long-time readers (and members of our Society) know, the quality of the data in your medical record is important, and it’s often not well managed at all: it’s quite common for family to discover errors or omissions.  In some cases the mistakes can be lethal. The case for Patient Engagement is clear: do you know what’s in your record?  Someday a health worker may look in the record, and if the wrong info is there, harm could result.

You could say: the good news is, medicine is finally computerizing. The bad news is, there might be grit in the database. Time to get to work and clean it up!

Wonderfully, our current administration’s health IT people (ONC) get it, and are publicizing the issue.

One step is today’s webinar, “Keeping EHRs Error Free: The Value of Patient Engagement.” (I’m not sure I agree that “keeping” is the right word, but politics is politics – you know what you need to do!)  There’s a great roster of speakers:

FEATURING

• Erin Poetter - Consumer e-Health Policy Analyst, Office of the National Coordinator for Health IT (ONC)
• e-Patient Dave deBronkart - Patient Advocate, co-chair, Society for Participatory Medicine
• Prashila Dbullah - Project Lead, NORC at the University of Chicago (“social science research that supports informed decision making”)
• Norman K. Sondheimer - Co-Director of the Electronic Enterprise Institute (EEI), University of Massachusetts Amherst
• Ethan Katsch* - Professor of Legal Studies and Director, Center for Information Technology and Dispute Resolution (CITDR)
• Kenneth Mandl - Associate Professor at Harvard Medical School; Director of the Intelligent Health Laboratory at the Children’s Hospital Informatics Program

*See footnote at bottom about “Katsch”

I’m thrilled that ONC chose to start this webinar with the voice of SPM, to set the context for all that follows. Compare that to a few years ago, when the patient voice would be an afterthought if it appeared at all.

Ethan’s a particularly interesting guy, to me.  I first met him in 2009, when the news broke about the mess I found in my insurance billing history, which ended up on the front page of the Boston Globe. Ethan was (is?) a patient at the same hospital, and, fascinatingly, he was also a world leader of the project – in finance - to let consumers identify errors in their credit card statements.

And get them fixed.

So, if you look at online credit card statements, y’know the thing where it says “Inquire or dispute this item”? He led the work to define the global process for managing such inquiries: how you report them, how the data custodian has to respond, how it all gets resolved eventually.

Well, now the same work is starting regarding our medical records.  Considering the many people who’ve told me they can’t get their errors fixed, this will be important work!

During the prep for this I was also thrilled to learn that Children’s Hospital Boston (Ken Mandl) has been doing world-leading work to empower family feedback in maintaining the quality of the record.  For one thing, I didn’t know anyone was being this proactive about it. For another, I’ve been suspecting for more than a year that parents of sick children might be the most potent force for change in healthcare.

So, listen in live, or view the archive. It’s important work, both technically and culturally, and of course for patient safety.

— Oh, one more thing: unlike in finance, this is NOT just about the consumer’s rights to accurate data: this can seriously affect health workers, too. Have you ever had a situation in your job where somebody gave you wrong information, and something went wrong? Well, in healthcare that can cause a well trained person to cause harm, which is a horrible, horrible thing. Doctors and nurses deserve clean data, too.

Patients can help. Let patients help.
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* About Ethan Katsch …  make that Katsh, no c.  How perfect that the announcement of a data quality webinar would contain a typo…. and Ethan says he never got around to having them fix it, so I pasted it in here – exactly the way errors get perpetuated in our medical records.

Ethan just learned again: fix it now, before someone passes it along to others. Bad data is an infectious disease.

Wesley Bedrosian for the Boston Globe

In today’s Boston Globe, the cover story for the daily ”G” magazine is “Record-Keeping 2.0,” by Chelsea Conaboy (@cconaboy). Subtitled “Medical care is shifting to electronic data files – but how safe is it?”, it’s a good mass-market introduction to the subject and where we sit today. If your grandmother or neighbor wonders what all the fuss is about, this is a good place to start.

This matters, because it’s a complex and important subject with a lot of half-informed whining, but Conaboy gets it right.

Many observers have written accurately about some aspect but have gotten the big picture wrong. Instead, Conaboy leads with an on-target vignette of a local doctor with a complex patient, focusing the story on a real-world example of why EMRs are needed: complex chronic cases like this account for a large part of America’s world-”leading” health costs.

In the vignette, the doctor’s EMR system (electronic medical record) catches a potential medication conflict. She then tours the issue as it sits today – the federal stimulus bill that’s driving adoption of EMRs, last year’s Health Affairs coverage, and the controversy created last year by Dr. Danny McCormick’s much-criticized study that, in the end, made the point that we need to ask whether these systems are in fact good.

One way this affects patients is that some of the systems are really badly programmed – “crap,” as one hospital put it. (In 2010 we reported that a big L.A. hospital was extremely frustrated by how hard their system was to use, and even the replacement they chose was “the cream of the crap.” That’s their words, not mine.) When you or your mother or child is in the hospital, do you want your doctors and nurses to be stuck with a system like that?

In 2010, while the regulations were being debated on what the government would require of these systems, it was widely rumored that a powerful EMR executive refused to allow system usability to be a criterion, saying that would happen “over my dead body.” Nice.

Not.

I made that the title of a speech I gave that June: “Over My Dead Body: Why Reliable Systems Matter to Patients.” (Slides here; see slides 48-55. Video here; this segment starts at 34:10.)  But the vendor won: the resulting federal rules have no requirement that the systems be reliable or easy to use. So yes: safety is an issue that the public should be aware of.

Data quality is just as important, and not at all guaranteed: long-time readers will recall that three years ago my own medical record was discussed in a page 1 story in the Globe, because of a post on e-patients.net that discussed the many errors I found in my hospital’s insurance records. (A piece of software had foolishly assumed my insurance records would be a realistic picture of my medical history.)

Within weeks this led to the first invitations for SPM members to participate in policy meetings in Washington as the voice of the patient. I’m told that the testimony provided by several of us ended up as decisive voices for the Meaningful Use rules that require “patient and family engagement” – we the patients must be allowed to view our records, online … and report errors, and get them corrected.

This work continues, and it’ll be really, really important for patients to work together with their clinicians and vendors to get these systems to the level they need to achieve: safe, accurate, and easy to use. Conaboy’s article doesn’t specifically address the role of the patient, but it’s solid in everything it does cover, and on target.

I was able to secure a scholarship to TEDMED 2012, thanks to TEDMED organizers and Johnson and Johnson. TEDMED is an annual feast of Health and Medicine innovators and has recently moved to Washington DC from San Diego.

You can see the great summaries of TEDMED on their blog page. Since there are so many sessions and such variation in topics (Medicine, Healthcare, Patients, Doctors, Artists, etc), the experience for every participant will be different. This is my summary of the talks that I liked. I hope the TEDMED community will post the videos soon so that everyone will enjoy them.

Jonathan Eisen‘s talk was about useful microbes in our life and how our modern life is removing these microbes (over cleanliness!). He was diagnosed with diabetes and this got him studying about how the lack of useful microbes might be causing the auto immune diseases like diabetes, allergies, etc. One of the startling findings he mentioned related to how kids born by C-section are at a 3-4 times higher risk for auto immune disorders like allergies and type-1 diabetes. He is also an avid blogger and is on Twitter too.

video by E-Patient Dave and follow him on Twitter.

In my previous post about TEDxMaastricht, I had talked about how the TED talks do not have a Q&A in the end. I felt that this format hurt the conversation since there were some talks which could have used some conversation. There was a talk from Jon Cohen, from Quest Diagnostics on if patients can be like consumers. In my opinion, it did a tremendous disservice to empowered patients by stating that patients will judge the quality of a doctor or hospital by things like availability of donuts in the waiting room. I feel like this might be the difference maker if all things are equal but in the example quoted by the speaker (hernia surgery), I feel patients do make the right judgment. It is to judge quality of health delivery based on outcomes (did the patient get all the information they needed about the surgery, did it help them? etc). The speaker also said that medicine quality should be based on “judgment” and “experience” of the doctor. I felt that even though “judgment and experience” are important from a medicine’s point of view, it does not matter to a patient as long as the outcome does not match expectations. I saw that many people disagreed with the speaker on Twitter. A conversation at TEDMED would have helped clarify the speaker’s thoughts.

Dr. Atul Butte of Stanford University had an interesting talk about how science is now democratized thanks to the web. Just like Elance.com and odesk.com brought outsourcing to technology and other tasks, there are websites like Assaydepot.com which is bringing outsourcing to science, pharmacology and toxocology tests on the web. I had never heard of this and I was very surprised to find that you can even outsource your mice tests!

We also heard from Dr. Diane Kelly who has done amazing original work on invertebrate penises (yes, penises!). She described her research in a very fun and very easy to understand way. Her research is related to answering the question of what is unique of the penis structure that helps in maintaining its shape during erection. I cannot wait to see the video of this talk. She blogs at Science Made Cool.

There were also artists who performed and showcased their works at TEDMED. I got to meet Regina Holliday, of the walking gallery fame, in person. She paints to give the patient voice in health information technology. Her story is very powerful and is a must read on her blog!

We heard the story of Ed Gavagan. He was stabbed on the street in some gang initiation ritual and he survived due to the timely actions of the emergency personnel and the doctors. His video will be very powerful to watch since no words can describe his experience narrated on stage.

There were many, many more powerful talks. These are the ones that I remember. I will post more thoughts as and when my memory helps me in the coming days. If you saw some talks that should be included, please do let me know so that I can write up another post with the ones that I missed here!

The Wall Street Journal today has several articles of interest to SPM members.

1) Amy Dockser Marcus reports on Frustrated ALS patients creating/testing drugs

2) Lauro Landro reports on a “simple idea that is transforming health care“: quality of life – what patients care about:

“…now health-care providers are also adding a whole different, more subjective measure—how people feel about their condition and overall well-being. They’re pushing for programs where nurses or trained counselors meet with people and ask personal questions like: Is your condition inhibiting your life? Is it making you less happy? Does it make it hard to cope day to day? Then the counselors offer advice about managing those problems and follow up regularly.

The logic is simple. People are more likely to manage their condition properly when they have more accessible, personal goals.” (Emphasis added)

3) Amy Dockser Marcus again on “Patients as Partners.” Imagine that! the “power of collaboration” – about the C3N project at Cincinnati Children’s Hospital. (See intro below)

4) This is for [ACOR founder] Gilles Frydman: Melinda Beck writes: “Researchers Tune In to the Internet Buzz” - ”Message-board chatter and Twitter feeds may provide a road map to areas that deserve further study.”

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Here’s the start of Marcus’s article. Notice the title and “the power of collaboration” -

Patients as Partners

An online network for sufferers of inflammatory bowel disease provides some clues to the power of collaboration
By AMY DOCKSER MARCUS

Doctors around the country have enlisted some new helpers in the fight against chronic disease—their patients.

A few years ago, a far-flung group of pediatric gastroenterologists set up an online network where they could share data and treatment strategies for children and adolescents with inflammatory bowel disease, in hopes of improving outcomes. It worked—up to a point. The remission rate jumped to 75% from 50% at some of the centers, but then hit a ceiling.

Some of the doctors raised a provocative question: Could they get even better results by bringing patients and parents into the effort?

Patients would experiment with new treatments and closely monitor how the regimens affected them day to day, then feed the data into the online network through computers or smartphones for doctors to examine. The patients could also use the network for things like social support, finding other patients who shared similar interests or lived near them.

“We were very focused on improving outcomes, but we were doing it without the families,” says Richard B. Colletti of the University of Vermont College of Medicine, director of the doctor-founded network. “Until parents and patients are true partners, you can’t get the best outcomes.” …

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Other articles in the section – I love that people are finally seeing that value in healthcare can arise from somewhere other than the doctor’s office and more treatment spending:

• The Wireless Revolution Hits Medicine: half-page interview with Eric Topol, author of the great new book The Creative Destruction of Medicine - “Eric Topol talks about innovations that promise to transform the delivery of health care, involving DNA sequencing, smartphone apps that use biosensors and high-definition imaging.”
• The Y Takes On Diabetes: “A diabetes-prevention program at the YMCA is helping people lose weight and could help companies save money. It’s also demonstrating the potential for a community-based organization to deliver a nationwide health-care intervention.”
• Numbers, Numbers and More Numbers: “Insurers, pharmacy benefit managers and health-care providers are pushing data analysis to new heights.”
• Meet George Jetson, M.D.: “Today’s health-care industry is making increasing use of Web-based virtual agents and avatars—computerized assistants that not only perform clerical duties but also dispense medical information.”
• Drug Discovery Gets an Upgrade: “Pharmaceutical companies are using powerful computers to increase their chance of success, manipulating molecules to create custom-made compounds.”
• If Only Heart Attacks Were Predictable: “Boston cardiologist James Muller, who founded InfraReDx, finds his quest to develop a test has been both long and elusive.”
• All the World Isn’t a Stage, but Some Med Classes Are: “The latest in medical education: simulations that offer hands-on training, the intense pressure of hospital work, and none of the risk. Video: Medical Manikins Simulate Real-Life Emergencies”
• Treating Wounds—the Holistic Way: “New treatments for chronic wounds have flooded the market. But a New York medical center may show that the most effective approach is preventing small problems from getting out of control in the first place.” My snarky thought: What?? That’s bad for the provider’s revenue! :-)

To see all the challenges that were accepted, go to Challenges.TEDMED.com, and click “The 20 Great Challenges” at bottom left. (The site doesn’t offer direct URLs to individual pages.) Ours is third in the list: The Role of the Patient. Many other challenges were accepted that are vital to patients and families.

Thanks to all those who voted, and all those involved in this program!

With this newly discovered attentive audience, I did not miss the teaching rounds at all.

I discovered that people without any medical background can easily understand complex medical issues if you tell it to them in a language they understand.

Follow him on Twitter at @NabinSapkotaMD. You may also be interested in his book project “Symptoms and Diagnosis,” with the tagline “Ask not what the symptoms of a disease are; ask what the symptoms of a particular patient mean.”

Here is his post.
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I visited Nebraska for the first time when I was in my third year of internal medicine residency at John H Stroger Hospital of Cook County in Chicago. We loved the small town Mid-Western charm of Nebraska so much that we decided to move there. I started working in the community hospital and I loved my job. It was a sharp contrast from the overcrowded Chicago hospital where we were used to patients not fully trusting the doctors and always testing the waters to see if they are not getting the treatment they really need. In the small community hospitals in Nebraska, people had so much trust in their doctors, it sometimes overwhelmed with a heightened sense of responsibility. As I explained the different treatment options to the family and asked what they would want, the most common response I got was, “Doctor, what would you do if she was your mother?”

When people trust you this much, every medical decision becomes personal and you want to give back as much as you can to the community.

During my residency, I loved the academic setting. I admired the teaching and learning but I was not very comfortable with the idea of somewhat impersonal nature of the doctor patient encounters in teaching hospitals. When you are rounding on your patient with five other doctors in the room, how can the patient identify with you and trust you to make the best decision for you?

I love the personal nature of my hospital rounds in Nebraska where I can talk one-on-one with my patients and make the best decisions for the patients without any barriers. I did miss the teaching rounds but slowly I started using the whiteboard again. This time it was the whiteboard in the patient’s room where the nurses write down the vitals and other reminders. I started teaching patients a little more about their diseases with simple anatomic diagrams. I was amused by how much interest they had in the diagrams and what I had to say. With this newly discovered attentive audience, I did not miss the teaching rounds at all. I discovered that people without any medical background can easily understand complex medical issues if you tell it to them in a language they understand. It was so much more satisfying to teach this new audience than teaching the crowd of overworked medical students in Chicago.

My main goal of these teachings was to try to involve the patients as much as I could in making the medical decisions. I was probably trying to teach them more so that they would not have to ask me the what-would-you-do-if-she-was-your-mother question. But, as I started this practice, I realized the patients were happier and were recovering sooner as they were actively participating in their care. I then started writing a short bimonthly medical column in the local newspaper to teach the same thing to more people in the community. I was surprised to find out so many people still read newspapers in this day and age. It was a great pleasure when when patients would recognize me from the paper and told me they liked my column.

I enjoyed this process so much I wanted to do more. I started a project to teach more people. I wanted to reach out to people like those in my community who get their health care in community hospitals and trust their doctors to make the medical decisions for them.

I think the best way to teach medicine is to start from the patient. That is what they do in residency trainings to prepare doctors for the real world. I believe that this same approach will work in the community as long as you tell the story in a language that does not involve any medical jargon. The people in the hospital room were very interested in what I had to say because they knew it was about the person in the room. If I start the story with a real person that my readers can identify with, I may be able to capture their attention and have them learn about otherwise mundane topic of symptoms and diagnosis. It is mundane and unimportant until it happens to someone you know.

As I was looking to spread the words about my project, I wanted to see if patients are willing or ready to actually learn more about their diseases and participate in making medical decisions. I then googled several terms including patients, participate and medical decision making and was very happy to learn about the participatory medicine movement. I was very happy to learn that more and more patients are demanding to actively participate in their care and learn more about their diagnosis. I was also excited to see many doctors embracing this idea and actively participating in participatory medicine. I will be very happy to join forces with you in promoting this idea. I can help spread the concept of participatory medicine from big city academic university teaching hospitals to community hospitals where more than 50% of americans get their medical care. Unlike the big city university hospitals, patients in these communities need more encouragement to participate in their care and that is what I plan to do.

Thank you

Nabin Sapkota, MD
Omaha, NE

The Patient Centered Outcomes Research Institute (PCORI) is soliciting input about patient-centered outcomes research. We blogged about this when they were seeking people to apply to be participants. Now the deadline to submit your comments is almost here.

PCORI is an independent, non-profit organization established by Congress through the 2010 Patient Protection and Affordable Care Act. Its mission is to help people make informed health care decisions by producing and promoting high integrity, evidence-based information that comes from research guided by patients, caregivers, and the broader health care community.

The legislation creating this group, governed by a 21-member board, is fascinating. Patient advocates must be part of the process: “For identifying research priorities, they take into account…a number of factors including variations and health disparities, the potential for new evidence to improve patient health, well-being, and the quality of care…as well as patient needs, outcomes, and preferences, the relevance to patients and clinicians in making informed health decisions….”

This is enlightenment in medical research. The law also states:

“All funded studies will have a strong orientation to the patient perspective and all will have patients involved in the development of the research, its governance and oversight, and its dissemination strategy.”

While PCORI touts the “patient voice,” they will be challenged to ensure there is rigorous patient contribution to their mission. A key concept in the PCORI framework is “patient centeredness.” But what does this mean? This vague term needs to be carefully defined, so there’s no room for varied interpretation.

Jessie Gruman’s Prepared Patient Forum post, “Getting the Patient’s Perspective in Research: Will PCORI Deliver on its Promise?” nicely describes the effort it will take to get it right. As a physician and researcher who is passionate about participatory medicine, I agree with her that scientists won’t get this right unless they work closely with patient advocates. If not, methods and measures won’t truly be patient-centered. According to Jesse, “If the signs of success of patient involvement in patient-centered outcomes research are not clearly defined (they are not now), methodological standards cannot be set to achieve them.”

The draft National Priorities for Research is packed with great intentions — having patient advocates involved in governance and reviewing research proposals — and I’m totally in. (Note to patient advocates: if you think medical jargon is hard to understand, wait until you see research jargon). It will be great to have studies focused on patient-centered treatment options and tools that help people make informed decisions about their health.

Are there lost opportunities? An imbalance of priorities? Yes, I think both. I added my comments on their feedback site, and so should you. Here are some of my thoughts:

1. Research must use participatory design, with patients not just reviewing proposals but joined with researchers, all through each project. Especially at the beginning, when researchers are trying to identify the “purpose.”

2. Research should study patient advocacy and participation — as an intervention to improve health system processes and as a means to achieve better patient experiences.

3. Research should include patient-designed measures. There isn’t much in the Draft Agenda about the patient contribution to measures. “Patient-centered” does not necessarily mean “patient-designed.”

4. Research should include how to design great health IT to collect data from patients. After all, if we’re trying to get to patient-centered outcomes….(Hello!)

5. Put more funding toward patient participation rather than comparative assessment. There is much science on what helps health outcomes, but less on how patients can be engaged using effective information-sharing and communication techniques. Only 10% of funding is allocated for communication and only 20% for methodology advances. If we want to practice New Medicine, we’re going to need more than 30% of funding to do New Research.

6. Increase the number of patient advocates on the board. This isn’t about the Research Agenda, but if they’re asking for feedback, it seems reasonable to provide this particular input. Why aren’t there more patient advocates? Maybe the bar was set too high? They didn’t look far enough? Not pay for people’s time? At the very least, organizations such as SPM or Planetree or the Institute for Patient and Family Centered Care, the American Academy on Communication in Healthcare, or the Center for Advancing Health should have up-front seats at the big table.

Society for Participatory Medicine members and others should use PCORI as an opportunity to be loud & clear about getting patient centered outcomes right. This is disruptive medicine and research — it’s going to be a journey. Your voice will help PCORI get it right from the start, so we get there sooner.

So don’t walk, run, to PCORI’s agenda and shed some light. You only have until March 15th.

CLICK HERE TO SUBMIT COMMENTS to PCORI.

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.”

Sarah is ahead of most of us. Only in the past six months did I begin to comprehend what she was talking about in her “revolution” post three years ago, cited below. So consider that what she says here will quite likely be accepted some years into the future, and we would do well to listen. (e-Patient Dave)

Here in London, ‘peerage’ has a special meaning: as the Free Dictionary puts it, “the rank, title, or jurisdiction of a peer or peeress; a duchy, marquisate, county, viscountcy, or barony.” So when I ran across a recent blog post about Peerage of Science (PoS) – a new peer review invention started in Finland by scientists, for scientists – I thought perhaps they were using the word naively, or tongue-in-cheek. But having now read the PoS-About page, it seems the service may represent a genuflection before that sovereignty which has ruled the research kingdom for the past century.

It was the subtitle of the Nature Network blog post by ecologist Mike Fowler Peerage of Science: A Publishing Revolution?  that caught my attention, as it hearkened back to a piece I wrote for e-Patients.net – Participatory Medicine as Revolution! Think Critically! Communicate! – some while ago. I’m on permanent watch for the “R” word, and though I’ve been on the sidelines of PM for a couple of years, I’m working with a true revolutionary of scientific publishing, Vitek Tracz, to help build his post-publication peer review (PPPR) service, Faculty of 1000. Arguably the originator of the open access publishing platform, Vitek believes there should be no gatekeepers for the deposition of research, and that all refereeing, debating, and revisions should be done transparently after publication. More about this in a minute.

What does the machinery of peer review have to do with participatory medicine (PM), and why am I disappointed in the newly announced PoS that some consider to be revolutionary?  To begin with, many argue that it’s not the concept of peer review that’s holding back scientific discovery, but rather its unrivaled status as the backbone and pre-requisite of journal publishing.  One of the best critiques of the current system was written for the Journal of Participatory Medicine, sister of this blog.  In its inaugural issue Richard Smith, MD, former editor of the British Medical Journal, summarized his observations:

After 30 years of practicing peer review and 15 years of studying it experimentally, I’m unconvinced of its value. Its downside is much more obvious to me than its upside, and the evidence we have on peer review tends to support that jaundiced view.

Not only does the current system delay valuable findings for months or even years, but it can prevent discoveries from ever seeing the light of day. Furthermore, studies have been conducted demonstrating that referees routinely miss serious errors. And in an editorial titled Is Peer Review Censorship?, Infection and Immunity editors Arturo Casadevall and Ferric C. Fang wrote:

If editors are overzealous in screening manuscripts for perceived newsworthiness or consistency with prevailing dogma, there is a danger of blurring the distinction between peer review and censorship. If a reviewer obstructs the publication of a manuscript because it competes with or questions his or her own work, there is an ethical dimension as well.

Yet worse than the delays, worse than the errors that creep through, and worse than censorship and obstruction of competition, is how pre-publication peer review limits what’s available to other researchers to build upon, and to all citizens, including patients who are on the front line, to broaden their perspectives and contribute to the armamentarium. Neuroscientist Bjoern Brembs states it vividly in his blog post Scientific Discoveries are Like Orgasms: You Can’t Have a Bad One. In today’s world of small-N clinical trials, genomic medicine, and a highly networked public, you can be sure that crowd-sourced knowledge will come from unexpected quarters, and will become critical to the discovery process.

Back to our “revolution”: Peerage of Science is assembling qualified peer reviewers and offering credits for their work, which can then be used to publish the reviewers’ own research. Articles are reviewed in a single round and participating journal editors can then track, accept, and publish the refereed content. I’m pleased that a ‘reputation system’ (explained helpfully by Peter Frishauf, founder of Medscape) for the work of peer reviewing is being tested.  But as stated on their website, PoS is (bold emphasis their own):

• not an open peer review service
• not a preprint server like arXiv.org or Nature Precedings – it is closed to the outside world
• not providing an alternative publishing model.

It’s a start, but is it disruptive?  Michael Nielsen, author of the recent powerhouse book, Reinventing Discovery: The New Era of Networked Science, gives a historical perspective in his essay The Future of Science:

The adoption and growth of the scientific journal system has created a body of shared knowledge for our civilization, a collective long-term memory which is the basis for much of human progress. This system has changed surprisingly little in the last 300 years. The internet offers us the first major opportunity to improve this collective long-term memory, and to create a collective short-term working memory, a conversational commons for the rapid collaborative development of ideas. The process of scientific discovery – how we do science – will change more over the next 20 years than in the past 300 years.

And his vision of the future:

 We should aim to create an open scientific culture where as much information as possible is moved out of people’s heads and labs, onto the network, and into tools which can help us structure and filter the information. This means everything – data, scientific opinions, questions, ideas, folk knowledge, workflows, and everything else – the works. Information not on the network can’t do any good.

Ideally, we’ll achieve a kind of extreme openness. This means: making many more types of content available than just scientific papers; allowing creative reuse and modification of existing work through more open licensing and community norms; making all information not just human readable but also machine readable; providing open APIs to enable the building of additional services on top of the scientific literature, and possibly even multiple layers of increasingly powerful services. Such extreme openness is the ultimate expression of the idea that others may build upon and extend the work of individual scientists in ways they themselves would never have conceived.

Recognizing that review and commenting is central to the discovery process, Nielsen bemoans the lack of incentives for sharing knowledge in the culture of science, and indeed the many disincentives:

The contrast between the science comment sites and the success of the amazon.com reviews is stark. To pick just one example, you’ll find ~1500 reviews of Pokemon products at amazon.com…Some people find this contrast curious or amusing; I believe it signifies something seriously amiss with science, something we need to understand and change.

Nielsen goes much further and I highly recommend his book. It’s encouraging that there’s now a vocal wave of enthusiasm from a growing enclave of publishers and scientists, to shed the vestigial processes of reporting research and embrace open collaboration as central to discovery (indeed, check out this brilliant Glowing Map of Science Collaboration created by Olivier Beauchesne at Science-Metrixm, described in David Dobbs’ blog at Wired.com).

Nature, Science, Cell, PLoS, Springer and others are testing the water, but a true revolution will take many more daring experiments; as Richard Smith has noted,

…experimentation inevitably means some failures. ‘In all science, error precedes the truth, and it is better it should go first than last,’ said Hugh Walpole…. It does, however, feel very bold for editors to abandon prepublication of peer review — like walking into the street naked. But if the emperor has no clothes, what’s to be lost? Nothing, but much is to be gained.

Meanwhile, this week we at Faculty of 1000 announce additional rebel fire in the guise of F1000 Research (@F1000Research).  In this open access repository for original research analysis and data, we’ll tackle all the “not’s” described above by Peerage of Science, with immediate publication followed by open review. Read more about it in the inaugural blog post penned by editor Rebecca Lawrence.

NOTE: Andrzej Krauze illustrated the Quixote drawing for the F1000 2012 calendar. His brilliant satirical art appears regularly in The Guardian, New Scientist, The Scientist and many other publications worldwide.

Man with defibrillator wants to know what his heart is saying

Photo: Laura A. Oda, San Jose Mercury News

Hugo Campos has a small computer buried in his chest to help keep him alive. But he has no idea what it says about his faulty heart.

All the raw data it collects, especially any erratic rhythms it controls with shocks, goes directly to the manufacturer. And some of it later gets sent to his doctor.

But Campos had to step onto a national stage in his fight to see the data his body produces.

His David-and-Goliath campaign puts him on the leading edge of what’s called the “e-patient movement” — “engaged, equipped and enabled” — that seeks to harness data so patients can learn more about their bodies.

“It’s mine. I paid for it. It’s in my body,” asserts the tech-savvy 45-year-old, who since his sudden collapse at the Fruitvale BART station four years ago has devoted himself to studying cardiology textbooks, attending device symposiums and scheming how to access the electronics of his tiny defibrillator.

“I have a right to my own damn data,” he said. … (See Mercury News site for full text.) 

What better place for this story to land than in Silicon Valley’s premier newspaper?  Several of us have been saying for ages that it’ll be great when innovators can pounce on medical data streams and do something innovative with them – especially, make those streams into something we ordinary mortals can understand. Have at it, fellow geeks! (And writer Krieger clearly gets it about the significance of data streams.)

Fellow SPM member David Lee Scher, MD (@DLScherMD) is also quoted, with a perfect participatory perspective:

Campos’ campaign has a professional supporter.

“It is embarrassing to leave our patients in the dark, by design or technological necessity,” wrote Dr. David Lee Scher in his blog. The former cardiac electrophysiologist founded DLS Healthcare Consulting, which advises digital health companies.

He cautions that the data is very technical, even for physicians, and often irrelevant. He urges patients and physicians to work together on a solution.

And that perfectly spotlights the participatory medicine aspect:

Our Society’s definition of participatory medicine, at the top of the website, begins: “…a movement in which networked patients shift from being mere passengers to being responsible drivers of their health…”  When you listen to Hugo’s TEDx and NPR pieces, it comes through loud and clear: that’s exactly what he and his ICD User Group want to do. Be responsible.

But the next piece of the definition is what’s currently missing: “…and providers encourage and value them as full partners.” He’s asking for the device makers, too, to encourage and value him as a full partner – in saving his own life, for heaven’s sake.

On a cultural note, the article says he wrote new lyrics to a Sixties protest song by Malvina Reynolds, “It Isn’t Nice” – and last summer he blogged a YouTube of it. The lyrics won’t win a prize for grace and meter, but hey, folks, this is folk music – vox populi - the voice of the people! Are you listening??

For the full lyrics, see his ICD User Group blog.

And in case you haven’t heard Malvina’s original peppy civil rights protest song, here it is. Enjoy that good old twelve-string guitar.

Do I hear a “power to the people” blowin’ in the wind?

Another summary of the Project’s health research is the following tip sheet, compiled by yours truly. I plan to keep it updated, so bookmark Pew Internet: Health on pewinternet.org.

Internet access:

78% of U.S. adults use the internet (May 2011 survey). For more, see: Who’s Online.

83% of U.S. adults own a cell phone (May 2011 survey). For more, see: Gadget Ownership and Pew Internet: Mobile.

Online health information search:

80% of internet users, or 59% of U.S. adults, look online for health information.

• This is based on a September 2010 survey, but it is a remarkably stable trend dating back to 2002. For more, see: Health Topics and Who Doesn’t Gather Health Information Online?

17% of cell phone owners, or 15% of adults, have used their phone to look up health or medical information.

• This finding is of particular interest to those interested in trends related to young people, Latinos, and African Americans, since these groups are significantly more likely than other groups to have mobile internet access. For more, see: Technology Trends Among People of Color and Mobile Health 2010.

The most commonly-researched topics are specific diseases or conditions; treatments or procedures; and doctors or other health professionals. For more, see: summary charts of health topics.

Also, keep in mind that the typical search for health information is on behalf of someone else – information access by proxy.

Peer-to-peer healthcare:

Pew Internet is tracking overall trends in how the internet is changing people’s relationships with health information and with each other.

“I don’t know, but I can try to find out” is the default setting for people with health questions.

• 34% of internet users, or 25% of U.S. adults, have read someone else’s commentary or experience about health or medical issues on an online news group, website, or blog.
• 24% of internet users, or 18% of adults, have consulted online reviews of particular drugs or medical treatments.
• 18% of internet users, or 13% of adults, have gone online to find others who might have health concerns similar to theirs. People living with chronic and rare conditions are significantly more likely to do this. See: Peer-to-peer Healthcare.

“I know, and I want to share my knowledge” is the leading edge of health care.

• 27% of internet users, or 20% of adults, have tracked their weight, diet, exercise routine or some other health indicators or symptoms online.
• 6% of internet users, or 4% of adults, have posted comments, questions or information about health or medical issues on a website of any kind, such as a health site or news site that allows comments and discussion.
• 4% of internet users, or 3% of adults, have posted their experiences with a particular drug or medical treatment.

For more, see The Social Life of Health Information, 2011 and Medicine 2.0: Peer-to-peer Healthcare.

As always, I would love to hear from people about what’s missing or what they wish we’d study. I welcome comments (below), tweets (@SusannahFox), and emails (sfox at pewinternet dot org).

So it’s big news that we’ve had TWO mass-media developments this week with almost identical titles:

1. Fabulous article in the January Angie’s List magazine, Empowered patients receive the best health care
2. Last night SPM member Nancy Finn (Twitter @NFinn8421) was on “Nightside” with Dan Rea, on WBZ Radio. She was discussing her book e-Patients Live Longer.  Nancy was thrilled (as was I, listening) that the callers – which that show does NOT screen – all turned out to be e-patients! One was even a regular caller who the host knows well … Dan had no idea the guy had a big e-patient story!

Evidently there are more of us than even WE realized – and with this mass media coverage, we can anticipate more.

I’m spending today (ONLY today, unfortunately) at the MIT Media Lab’s third annual Health & Wellness Innovation event.  It’s a two week competition – six teams pursuing some terrific ideas for the most patient-friendly health innovations I’ve ever heard of. Or close to it.

I’ll write more about it but for now I want to just get this started, because I think they’re going to be crowd-sourcing input from us out here, via Twitter and probably some blogs.

These are all heavily data-centered, open-source, collaborative projects. Below I’ll say why this looks so very different to me. But first, here are the Twitter hashtags, with links to the Twitter feeds:

• Top level hashtag #MLhw12 - 
• web page here
• feed & archive here
• participate live on Tweetchat here

• Project 1 – pain management including skin conductance and data-reporting pillbox (#MLpain)
• description here
• feed & archive here
• participate live on Tweetchat here

• Project 2 – asthma management with toy-like spirometer (#MLasthma)
• description here
• feed & archive here
• participate live on Tweetchat here

• Project 3 – cardiac rehab with a Microsoft Kinect and pulse oximeter (#MLcardiac)
• description here
• feed & archive here
• participate live on Tweetchat here

• Project 4 – Integrating MOTOACTV Fitness Tracker w Hypertension and Diabetes Management – with a hacked insulin pen (#MLdiab)
• description here
• feed & archive here
• participate live on Tweetchat here

• Project 5 – humanizing mobile health apps by tying people’s life goals to their medical metrics (#MLlifegoals).
  I especially love this one – I tweeted from the project’s description: “the problem is [most apps] focus on goals that lack true meaning to the user … apps focus on heart rate, when pt wants 2b able to play w/her grandkids for 5 min”
• description here
• feed & archive here
• participate live on Tweetchat here

• Project 6 – management of post-op needs including a virtual pet that shows how well the child is doing (#MLpostop)
• description here
• feed & archive here
• participate live on Tweetchat here

What’s conspicuously different about this event compared to any other I’ve seen:

In this room, if what needs to get done isn’t getting done, it’s viewed as a system failure, not a “patient compliance” problem. These people are striving to make everything work better, in our hands.

After 150 events in two years (medical conferences, tech events, policy meetings), I’ve concluded that medicine’s single most important dysfunction is the idea that useful wisdom comes only from biology (or other medical innovations), and it’s up to us to use whatever they danged well give us, containing that received wisdom.

So when patients don’t do what they’re told, it’s a “compliance” problem – and people in healthcare bitch about how irresponsible we are. Even the October Health Leaders magazine had this near the start – in its “Patient Engagement” issue!

In our annual Industry Survey, leaders cite patient noncompliance and lack of responsibility as the fifth-greatest driver of healthcare costs at their organizations.

Meh! How about you guys get your act together and give us methods that work for us? 

I mean, seriously: in what other industry can they respond to “This is hard to use” and “I don’t like doing this” by saying “You’re just not good enough for our wonderful inventions”?

I used to work in software companies that tried that approach. They went out of business when innovators came along who understood that easy to use gets done better, and people like it more.

A great example is GlowCaps – a pill bottle cap that glows, beeps, or texts you when it’s time to take your pills. (Check out the “adherence” results from a clinical trial – nearly perfect! No change in patient “morality” – just a better freakin’ tool for us to use.)  (David Rose, formerly of that company (now sold), is in this event.)

Here’s to the people working on these challenges. If you’re a Twitter fiend, follow those hashtags and let the innovators know what you like.

p.s. Anyone who wants to complain about patient “compliance,” please remember that the shoe’s on the other foot with clinician “quality”: hospital workers only wash hands per protocol about half the time, physicians prescribe the standard of care only half the time. The result, as Susannah Fox blogged about Peter Margolis, is that “.5 x .5 = .25″ – the shared unworkability of everything means clinicians do what they’re told half the time, and patients do too, so healthcare on balance operates at 25% efficiency.

And we grouse about rising costs and fail fail fail.

Here’s to the geeks who understand what works.

ACOR’s “KIDNEY-ONC” kidney cancer patient community was recently honored with the “Maily” Listserv Choice award in this, the 25th anniversary year of Listserv® technology. In announcing the award, the vendor’s site (Lsoft.com) described the KIDNEY-ONC list as  an “exceptional email community,” and quoted volunteer list manager Robin Martinez:

“The award recognizes the KIDNEY-ONC LISTSERV list for connecting people to provide life-changing and indeed life-saving information and support. The credit goes to our wonderful KIDNEY-ONC members whose deep dedication to finding and sharing information is matched only by their support and caring for fellow patients and caregivers. I am proud to be part of all this.”

She’s right; I well remember when this community gave me high quality, accurate, up-to-date information, within hours of my first message to them – five years ago this January. (And yes, I checked with my oncologist, David McDermott, at Beth Israel Deaconess – he confirms that KIDNEY-ONC’s information was indeed accurate, and I’ve since learned it’s better than many community oncologists have.)

I also well recall that when I was about to enter treatment, I asked my ACOR buddies what to expect. (The exotic treatment I got has side effects that the American Cancer Society describes as “often severe and rarely fatal.”) When it hit, I was ready – and today Dr. McDermott says “I don’t know if you could have tolerated enough to do the job if you hadn’t been so prepared.”

How’s THAT for value in healthcare?

In a private note, Robin also encapsulated the life of a patient community manager: ”Frankly, I’ve been so busy with kidney cancer activities that the thought of an award was the farthest thing from my mind. I was stunned, thrilled, and gratified to learn that Kidney-Onc is this year’s grand prize winner.”

In my speeches I often say “ACOR is very low-tech – a bunch of plain old plain-text Listservs – you can’t attach anything, you can’t even do boldface. ACOR proves that when it comes to social networking, it ain’t the platform, it’s the people.”

(“Listserve” is often used as a generic term, but Listserv® started it all – it’s the original, and trademarked, name of mailing list software introduced way back in … 1986!)

To join the ACOR email group, visit this page. For a disorganized list of other patient communities on ACOR and elsewhere, see this page on my own site, which links to many others.

My personal favorites among several quotable lines in this article:

“Pressure that physicians feel to maintain a good business model threatens to overlook a critical part of our ‘product.’ In health care, the patient’s story and the relationship have ironically become the obstacle, rather than the objective.”

and

“Health care providers must embrace the goals of improved safety, efficiency, effectiveness, and timeliness, but must also realize that health care does not own health and care. If it is owned by anyone, it is owned by patients.”

Happy New Year, dear readers! May 2012 bring us closer to attaining patient-centered care.

First, orthopedist @HJLuks published Your Role in Avoiding Medical Errors, 101. A few highlights – see the whole post:

• “Look at your medical record. … As health information exchanges, and collaborative networks enable the sharing of information – – – that can work both to your benefit, as well as  amplify the risk of harm.   Bad information in… bad information out.”
• “when your physician or healthcare provider is discussing their thoughts on your diagnosis, and a possible treatment plan, it is extremely important that you feel comfortable in questioning either the diagnosis or the treatment plan and asking whether other options or possible diagnoses are possible“
• “Although many patients do in fact seek second or third opinions from a specialist, they rarely seek second opinions, if ever, on diagnostic studies. …
• The very same holds true for pathology specimens. There are pathologists who are highly sub specialized in certain areas and thus are far better qualified to determine  whether or not a tumor they’re looking at is malignant, benign, and what subtype of tumor it might be – – – which could make the world of difference when determining what treatments are available.”

There’s more – hm, should we have a quiz on Friday??

The other was from Amy Romano (@MidwifeAmy) of Childbirth Connection, who’s appeared many times here: How to Get Good Maternity Care, on the Lamaze International Science & Sensibility blog. It’s got multiple resources – here’s one, a slide show of their ten pointers:

Also available on the post is a PDF of the tips and a short video, Childbirth with a Heart, that makes a great case in just 2:32 for being actively engaged in all aspects of birth – not just the naming.

Thanks to both of these professionals – a physician and a midwife – for sharing these empowering and enabling posts. Each supports patients being active, responsible partners in participatory medicine.