You Are Wasting Your Time Making Social Media Apps and Platforms for The Chronically Ill

Jane Sarasohn-Kahn at HealthPopuli disects a recent Pew Study Chronic Disease and the Internet “The Diagnosis Difference“. Sarasohn-Kahn analysis and comments are spot on and clearly have the economists feel which is clear and to the point.

So top line, people with chronic illness even one will seek information online, participate in peer to peer social media to understand reviews on drugs/treatments and learn from other patients. BUT wait for it. Chronically ill patients are less likely to have internet access because they are older and less educated. They are not on par knowledge wise with other US adults regarding information and tech adoption. That’s a problem. 

The Pew study which those who are ill with internet access become more engage with their health and share that information with HCP at a higher rate than those without a chronic illness. The will self track  ADL, meds, etc. It works for them since they identify that this activity makes a difference on their health or those they are caring for. See the chart on the HealthPopuli. 

You’ve all seen this before, 70% of all adults look online for health information. And those with 2 or more chronic conditions are more likely to seek information at a rate of 62% vs. 52% when compared to those with no chronic condition. Here is a chart from HealthPopuli post:

There are large differences in health information seeking behaviors in chronically ill vs. healthy people especially for:

  • Specific medical treatments (53% vs. 41%)
  • A drug you saw advertised (20% vs. 13%)
  • Drug safety or recalls (21% vs. 15%)
  • Medical test results (18% vs. 13%), among others.

To fully appreciate the chronic condition category 1 in 4 US adults have at least one and 1 in 5 live with 2 or more. Here are the conditions that Pew listed.

  • High blood pressure, occurring among 25% of U.S. adults in the survey sample
  • Lung conditions, managed by 13% of U.S. adults in the forms of asthma, bronchitis, emphysema and other lung issues
  • Diabetes, among 11% of U.S. adults
  • Heart conditions, for 7% of U.S. adults (e.g., heart disease, heart failure, or heart attack)
  • Cancer, among 3% of the adult population, and
  • Other chronic conditions, for 16% of U.S. adults.

Sarasohn-Kahn makes the following points

  • Those with serious chronic conditions seek information (Think adult learning and how people seek solutions to problems they have.)
  • Most people do not self-track health via digital which enables behavioral changes and better outcomes
  • Active seekers of health information who self-track cost less. See this link here.

Ya gotta love an economist because Sarasohn-Kahn point to three links that offer health apps and phones. This is the supply side. They are:

TracFone and VoxivaThe Commonwealth Fund has paper on creating provider patient partnerships, finally NEHI shares eleven apps that offer ways to manage chronic illness.

The bigger issue is the demand side where Pew reports that few people take advantage of these tools.

This is a very important analysis of the Pew data and is something that we must solve going forward in order to change outcomes or at least improve patient care. The SM cognoscenti keep talking about how SM is the ultimate tool in our healthcare tool box. What in fact we need to do is identify this and build strategies that solve the problem. We don’t need more apps or platforms. We need answers and subsequent strategies. I still believe it is not WebMD but MyMD where true learning and knowledge occurs for both patient and HCP.

Notes & Links: October 8, 2013

Being in the Pink: Some Alternate Views

#$@*-Off For Breast Cancer Awareness
Cats & Cancer takes a hard critical look at October Breast Cancer Awareness month. All the Pink in the NFL?

Do NFL players wear pink wristbands because we aren’t aware of breast cancer, and watching 350-pound linebackers in pink accessories cause people to want to look into issues surrounding the disease?  Thank goodness the NFL has an online shop to sell NFL branded breast cancer awareness items.  Too bad their message is “A Crucial Catch:  Annual Detection Saves Lives” when it’s not totally true.  Some of the videos on their pink site, although compelling, do not support the message and are about self-diagnosing the disease and not annual screening.  And the NFL isn’t even putting any cash into this campaign.  You, as a supporter, can bid on the pink items the players wear in the game.  Then your money can go to…um…something.  Lucky us!

Think Before You Pink: Breast Cancer Awareness
At Healthcare Marketer another critical appraisal of Pinktober.

I Hate “Pinktober”
From Robin offers a radical view that cuts to the chase don’t buy pink merchandize or walking thill your feet bleed but, 

Consider this: instead of purchasing that pink t-shirt or that baseball cap with the pink ribbon on it, or raise that $2300 to walk the Komen, take that money and buy groceries for the woman in your church/school/neighborhood who is dealing with breast cancer.

Help her pay her light or heat bill.

Help her out with child care.



Friendship means the world to us.

These are sole voices but voices that should make the millions and millions of us blinded by pink this month to stop and think about cancer and not just breast cancer but all cancers including lung which kills more each year.

The Promise (And Reality) Of Healthcare
Goodman and Noorbeck contributors to Forbes addresses the economic truth about healthcare. Nothing here is new or surprising and has been part of the healthcare debate and fight for years. But it is worth another look and I would say we should all revisit this once a year to determine how well they saw the future. 

  • There is currently a shortage of physicians and nurses in the US and that will only get worse as all of age. We all know age means illness. And just to add injury to insult the ACA is trying to recruit 30 million new Americans to the luxury of healthcare.
  • Accountable Care Organizations are in reality just extensions of large hospitals and will in the end drive prices up because they are buying physician practices up and are in reality a nightmare of red tape
  • Affordable Care Act is 20,000 pages long and so unwieldy it will crush us all. Additionally individuals buying health insurance don’t have to verify employment status, income, etc. Can you say fraud?
  • Affordable Care Act will mean new and higher taxes.

The authors end with the following recommendation that I agree could help with the economic issues. But I want to know how these truths hold up in one, two, or three years?

One solution that has received scant attention is to establish an advisory panel of real practicing physicians – who treat patients every day – to review, evaluate and make recommendations on which regulations improve patient care and which ones just increase government bureaucracy.  Another solution is to truly reduce rules and government red-tape instead of writing new regulations at the rate of 68 per day.  For some foolish reason, all of the proposals for healthcare reform projected over the past few decades have excluded the voice of the practicing physician. 

How Much More Evidence do You Need?
Aarron Carroll at The Incidental Economist gives us word up on probiotic supplementation, necrotizing enterocolitis, and preterm infants. This is an excellent analysis of the data from the likes of JAMA and a Cochrane review. He ends the post with the following…

It also attacks the way that probiotics seem to be held to a standard that traditional medicine is not. Look, I will be the first to slam any practices, traditional or alternative, that make claims that go beyond evidence. I will be the first to mock those that refuse to engage in studies because they think they might find something they don’t like. Neither applies here. This is a problem that needs fixing, now.

HealthcareDIY: An Old Idea Made New
Jane Sarasohn-Kahn writing on The Health Care Blog introduces a new site HealthcareDIY and wraps the discussion around what the current new black in patient care the ePatient. She writes about her mother Polly

…who died 34 years ago this month. She was my first role model for an engaged patient. When she was diagnosed with Hodgkins lymphoma in 1971, there was no internet for her to tap into for a patient network, a clinical trial, or a directory of oncologists or centers of excellence that were Top Doctors for treating the condition

This is a must read for anyone who is interested in or wants to become an ePatient. It is also a must read for the simple reason it is not yet another post about how our healthcare system, the ACA, our economy because of healthcare is all going to hell in a hand basket. This is about what small steps taken by individuals can add up to a movement that improves care and lowers cost. But I’m just a pollyanna who some days is longing to take a dirt nap. 

Patient Engagement: The Tipping Point of Change

Linkedin has a discussion on patient engagement (HERE) based on a Forbes article titled “Blockbuster Drug or Snake Oil?“. 

Paul Van Hoesen commented. His primary message being, evidence based medicine and coordinated care would likely deliver better outcomes. He also addressed Patient Engagement and how especially with surgical patients their engagement experiences were telling. He ends his comment with the following:

“In the meantime we have a generation of patients waiting for someone to take the time to tell, take the time to listen, take the time to engage.”

This struck a resonant chord with me. I am reading Ken Robinson’s The Element How Your Passion Changes Everything. The book is a series of stories about how people discovered their element or the zone for what drives them and gives them the motivation and energy to achieve. He calls it passion (personally it is an overused term). But my point is that I see a parallel between this book and Paul’s comment. 

Using Google’s ngram viewer and entering “patient engagement” between 2001 to 2008 the term was found .00000024% in 2001 and .0000006% in 2008. Albeit this is a very small number but consider ngram searches a “corpus of books” over the period selected. That is the simplest application of ngram. There are many other methods to append a phrase or term but for now frequency of patient engagement between between 2001 to 2008 this provides a sense of its pervasiveness. 

A Google search of patient engagement returned 13,500,000 results. A PubMed search returned 4,993 results. And just for kicks Google Scholar returned 640,000 results. Patient engagement exists. The literature addresses the benefits of patient engagement, how to achieve it, what do with it, etc. etc. We are not short on what patient engagement is and what it can accomplish or in many cases what it won’t accomplish. What we are missing is what Paul’s comment hints at, the reality of real patients wanting to engage. 

We know there is a large, dynamic, and engaged group of consumers/patients who are using the Internet to manage their health and this is not limited to self-help. Caregivers are among the largest group using the Internet to search for knowledge about healthcare for a loved one. What all these consumers/patients have in common is the desire to find solutions to healthcare problems they or a loved one is facing. They want knowledge. And they are finding it,sharing with others, and at times sharing with their HCP. But there is something missing here. 

This large and to Paul’s point an entire generation of patients who are finding knowledge and learning about healthcare they are longing to be engaged in order to be guided.They want to share what they’ve learned with their HCP. They are seeking to add more knowledge to what they’ve learned or replace non-EBM knowledge with better knowledge. They are looking to be active, receptive, and ready to manage their health and healthcare. Sounds obvious. It is. But are we harvesting that for the greater good?

Consider these patients/consumers learners. They are in a zone. They have a passion. They are not unlike children who are wide eyed and eager to use what they’ve learned. They are a perfect example of how the HCP, providers, insurance companies, and other patients like them can be motivated to take action. They want to reside in an environment where they can be inspired to improve their health. Otherwise why would they spend time searching and trying to solve their healthcare problems. The active engagement of these learners in their healthcare will change the fabric of the relationship with their HCP, the institution, and insurer.  
It is time we look at patient engagement less like a clinical trial and more like harvesting a rich crop of patients who will be at the heart of our future healthcare. They are a tip of our collective path to improve our healthcare. 

Notes & Links: August 18, 2013

Drug or Snake Oil?

Dan Munro of iPatient contributing to Forbes takes a look at the new black in healthcare ‘patient engagement’. His article gives us a chance to pause and consider what it should mean and how it should be measured. I am an advocate of outcomes and how to measure if what we are doing is working and improving patient care. 

Dan quotes Leonard Kish Principle and Founder of VivaPhi

Actually, it’s surprising that it has taken us this long to focus on patient engagement because the results we have thus far are nothing short of astounding. If patient engagement were a drug, it would be the blockbuster drug of the century and malpractice not to use it.

Dan provides the reader with some metrics (outcomes) from patient engagement

Kaiser Permanente HealthConnect™ / Collaborative Cardiac Care Case Study (here):
1) Prevented 135 deaths and 260 costly emergencies

2) Patients meeting cholesterol goals went from 26% to 73%

3) Patients screened for cholesterol went from 55% to 97%

4) “Clinical care teams reduced overall mortality by 76 percent and cardiac mortality by 73 percent”

Dan’s advice, patient engagement is in place and is working while we all need is to be careful we are not being fed BS by believing what is passing for engagement is actually a way for systems to lower utilization cost at our expense. It is a short but excellent read. 

From my view patient engagement is key and should be build around an understanding of the problems patients and caregivers want to solve. Hereherehere and here are my thoughts on how to achieve patient engagement and what it does to drive improved patient care. 

AHRQ and Improving Patient Physician Engagement

I was  tooling around the ‘net’ (read killing time) and I stopped by to see what’s up. I stumbled on “Questions To Ask Your Doctor” The pages opening paragraph says: 

“Asking questions and providing information to your doctor and other care providers can improve your care. Talking with your doctor builds trust and leads to better results, quality, safety, and satisfaction.”

That’s mom, apple pie, and the stars and stripes all rolled into two sentences. Further down the page you’ll see:

Which links to deeper insights and questions. Overall these are excellent and accurately address the key needs to improve patient physician engagement. They are  well done and thought through. AHRQs even includes a video from patients and physicians why this is important. 

I am very curious about this page and the information it offers patents. How many hits a month they have? How many are unique? Who is the average page viewer, age, gender, education, etc? What do they do with these questions? What is their expectations with their HCP? And what happened when they did go to the HCP with the questions? And what does the HCP think when asked these questions? That would tell us so much about patient physician engagement. How is executed? Do sites like AHRQ help improve it or does this fall on deaf ears therefore requiring a different tactic?

Second, I am wondering if this page and information is reaching as many people as it should? How is AHRQ promoting the page? Does it just fall into the overall AHRQ promotion if there is any?

Additionally I think that many of these questions are not limited to AHRQ. I suspect most if not all hospital systems and providers have web sites that feature similar questions. Mayo Clinic when you search ‘questions to ask your physician‘ has a myriad of links for disease specific questions. See here.

Now what I don’t know since I am sitting out here and not inside these organizations do they know if these questions are used? Why? Why not? Do using these questions have an impact on patient care? Outcomes? Are they measuring impact? 

To know this information would do much to help improve the work flow (i.e. patient physician engagement) of the HCP and the patient. As a marketing problem we need to know what is happening, how it is being used, and what it’s accomplishing. Once that is done we either pat ourselves on the back or scrape it and rebuild it to meet the needs of patients and HCPs.

How would want to use these questions? As a patient or caregiver or as an HCP.

Learner First and Foremost, Patient Second

I’m a staunch believer in adult learning and how when the theory is put into healthcare practice it can improve patient care and create durable outcomes for the patient, aid the HCP in improving patient management, and help lower utilization costs.  

This weekend I read with rapped attention Jim Rutenberg’s article in the New York Times Magazine “Data You Can Believe In” and last week I listened to Jonathan Alter’s interview on Fresh Air about the Obama reelection. Both spoke in great detail about how the analysis and use of data was the difference in victory for the Obama win the 2012 election.

What does this have to do with healthcare outcomes? I was struck by how the Obama campaign accessed Facebook data, identified people who supported the President, and were able to have those supporters reach out to friends on the fence or not active become active. Further they were able to identify better tools to find and reach uncommitted voters by comparing TV cable box data with lists of uncommitted voters in order to change their behavior.

In healthcare we have been striving to improve physician patient engagement while recognizing that more and more patients and caregivers are searching the WWW to learn about their health. All the while providers and HCP are moving toward EMR. This is creating one the richest databases in healthcare.

The questions becomes; how can we analyze current patient files within a provider system (I would submit that is being done), and take subsets of that data to identify areas where learning would yield the greatest improvement in patient care, and finally how do we identify (think set top box) who would be the most active learners and least active? How can using data as they did in the Obama campaign improve patient physician engagement?

We can look at data within the provider system to determine which patients are yielding the best outcomes with the lowest utilization cost. And as we move further away from best outcomes to not so good outcomes within the same CD9 code we can identify what the differences are in age, gender, socioeconomic data etc. This will yield a picture on who is doing well and who is not while hinting at why and what are the differences between great and not great. We have a map per disease of behaviors and a model relative to outcomes identifying key demographics.

I don’t believe we will learn what learning behavior or motivation is present from this analysis. What we need to add to patient EMR is data on the patient as an active learner, how, why, where, etc. This is a simple and easy to administer inventory which becomes our set top box of user behavior around learning. It tells us who is learning and where. Are they active learners or not. It’s that extra bit of knowledge that can be used to intervene in disease management and its progress. Matching learning behavior with outcomes with patients would be powerful tool to know where we want to apply pressure to foster and drive healthcare change at the patient level.

Keep in mind I’ve lead this post with the patient first and added patient as a learner. Now let’s reverse that to lead with the learner as a patient. It would be easy to use this data to identify the characteristics of learners who wants to know more about their disease, think active learners.

Now consider a provider or HCP offering this well identified and targeted group improved knowledge access and uptake. Not just better care but becoming learning partner with the patient. If providers can target learners better and either bring new patients into their system or better anchor current patients to improve outcomes and lower cost. Isn’t that what we want from healthcare, a long-term productive and learning driven relationship? Healthcare is not passive; it is an active learning relationship between peers with different skills sharing decision-making. 

The proviso for all of the above, any data analysis would work within HIPAA guidelines etc. 

Medicine is a Service Profession: Leveraging Patient Knowledge

Drs. Kesselheim and Cassel published a perspective piece in the NEJM “Service: An Essential Component of Graduate Medical Education”. Here is the link to the article abstract. Sorry it’s behind the pay wall. L

In my mind the first sentence ties to social media and current patient behavior to healthcare while defining service, “Medicine is a service profession, and commitment to service is a hallmark of humanistic physicians.”

First, the primary point the authors make is that Accreditation Council for Graduate Medical Education (ACGME), (which provides oversight for residency programs) recently completed a survey that asked about evidence of excessive scut work. ACGME framed the question “How often has your clinical education been comprised by excessive service obligations?” Service is completing a chart, dictating a letter and revising, entering orders in a chart, etc. The authors present a cogent argument that the ACGME question asks residents to give personal interpretations of what service is and what education is when in fact service is part and parcel of education. Service is not counter to education.  Service is key to graduate medical education as witnessed by practicing physicians. They know from their years of practice that service is an important teaching tool because it is more likely that ‘scut work’ is solving problems. Solving those problems creates reflection, which is how humans learn. This optimizes resident and physician education with patients.

In a larger context of what is happening with patients today online, and in social media (SM) behavior service has a direct and valuable connection to what it means to be a “humanistic physician”. As we know, more and more patients and caregivers are using the Internet to learn about health, healthcare, and disease specific knowledge. They are becoming advocates for their health for themselves with their healthcare professional (HCP). They are asking questions, making HC decisions, and are pushing the boundaries of HCP and patient interaction. As that old troupe says “Enquiring minds want to know.”

I can’t think of anything that witness’s the power of service and humanistic behavior more then the HCP helping patients become more knowledgeable in managing their own healthcare. Service is not just tending to the clinical issues of a patient but improving the knowledge of those enquiring minds. What can we do to drive the person seeking information about their healthcare and change information into knowledge? Have the HPC provide it and help to make make it part of improved patient behavior.

The HCP cannot be part of this change without accepting and embracing service on what some consider a horrific level, patients asking annoying questions and making requests. So as the authors argue it is key that we don’t paint physician service ‘scut work’ with a wide tar laden brush as non-education but put knowledge and learning into a bidirectional service driving outcomes beyond the dx and script. We know that patients who are involved in their healthcare with their HCP use less physician time and have better outcomes. it is knowledge and sharing this service I call knowledge transfer that drives this change.

The world is changing and HCP needs to change as well and must accept a new vocabulary where service is not scut work but learning. Where the HCP is driving knowledge and not treating it like dollops of sour cream on a baked potato. We are seeing it work on sites such as Howard Luks, MD, his Twitter timeline and more. Howard and thousands of others are taking service and making it learning driven and this is the brave new digital world.

My final thought on this comes back to my general attitude toward healthcare and learning. Just because you create a web site, have a Twitter account, or post on Google + it does not mean you have a set of goals/objectives or a strategy (see this on strategy) to service your patients and improve their knowledge.