It’s Not WebMD, It’s MyMD: Podcast #023

An original paper in JMIR (J Med Internet Res) “Evaluating the Process of Online Health Information Searching: A Qualitative Approach to Exploring Consumer Perspectives


This important paper takes a deeper dive into consumers health and learning behavior when using the internet to search for healthcare information. The paper identifies qualitative data regarding search behavior and process and it reviews in great detail the quantitive data. And I would submit that this paper points path to improve physician and patient engagement. Additionally, whether you buy my conclusions/recommendations or not, this paper has all the key and important references. For me this is the data that drives new strategies and tactics that will increase and improve physician/patient engagement.

Finding a Voice Hacking the Narrative: Podcast 021

Finding a Voice Hacking the Narrative — We all have a voice. It’s that internal monologue we have with ourselves. Have you ever considered what that voice is and how it connects to raise above the din? How do I find my voice when I am working to find my way? Can our voice be a guide or a tool to drive a narrative and content?

Why Some Content Marketers Succeed When Others Fail

“How do you do it all?”

Message Dissemination/Knowledge Translation Is a Horse and Carriage: Podcast 017

Social media is the bees knees today. It will do everything from get rid of waxy build up on your kitchen floor to change all human knowledge. The reality is SM is a tactic, a powerful one that can achieve so much. Austin B. Fract shares his view and process for dissemination of information and how to achieve it. I talk about making it do more.


The Incidental EconomistA Hierarchy of Dissemination TacticsTranslating Research into PracticeKnowledge Translation 

Becoming An Internet Savvy Patient: Podcast 014

The Internet is a rich, vital, and important vein of information on healthcare, clinical medicine, and sharing.  It sometimes takes trial and error to find the right information. Let’s see if we can remedy that.


Today we discuss ways to become an internet savvy patient with Diana Frame owner and founder of Frame Research which provides rigorous summaries of medical evidence to health care decision makers. Diana shares her practical and smart academic search process with Carolyn and I. We had her promised to return and teach us how to bring what we’ve found to our HCP. So keep an eye open for Part II.

Below are links that Diana identified as key sites for patients and caregivers.

Please let us know if this was informative and what else you would like us to discuss.

Finally, take a look at the Pubmed search interface that Diana created for the iPhone/iPad called pubsavvy. It makes your Pubmed searches sing. You can download it here.

Mayo Clinic

MedlinePlus  (It also has a Spanish language version)

Centers for Disease Control (especially good for infectious disease updates and various US health statistics)

Cleveland Clinic  (has an online chat feature)

Google and Google Scholar can be very useful, as we discussed, particularly if you use specific search terms and refine them as you go. Try the “medical term” diagnosis rather than symptoms, and the generic name of drugs rather than brand names, for more rigorous results. (Do the opposite if you are looking for more basic patient care info, or descriptions of patient experiences). Your local public library can also be a good starting point.

Disease-specific organizations are good places for more targeted info, and some .orgs can help you find a community of people with similar health issues (the social learning piece we talk about), which is usually lacking at the .gov sites. For example – NCI is pretty comprehensive, but without the social aspect that one may find at American Cancer Society who has a list of ACA online communities.

Patients Like Me is a good one, not specific to cancer.

More in-depth evidence based medicine sites – these may require some familiarity with medical jargon:

PubMed is the big one

AHRQ Evidence reports

National Guidelines Clearinghouse – website is a little clunky to search, but if you do find a relevant hit on this it is usually a fairly comprehensive summary from a reputable organization

Cochrane Library  – only summaries are available for free (and they are a little dry, even for academic medicine), but again these are reviews assembled with a rigorous methodology – a good place to look for ongoing studies, for those with an understanding of their or a loved one’s specific diagnosis. Also can be helpful to find clinical experts in your area, even if trials are not appropriate.

Retail Tools for Hospitals and HCPs to Monitor Patient Sentiment and Knowledge

Stephanie Miles an associate editor at the Web Sit Street Fight highlights 6 Tools Small and Medium Businesses (SMB) Can Use to Monitor Customer Sentiment. Sentiment analysis is defined as

detecting and understanding how the audience is reacting to a brand, either positively or negatively,”

Understanding sentiment is critical to business owners for obvious reasons but more importantly these tools can help shape strategy and determine how messaging is working. For the retail industry this is an important exercise as well as an analysis tool. As I read this article I wondered how the tools Miles presents can be applied to healthcare specifically hospitals and physician practices. Patient engagement and epatients are the rage today can any of these six tools be used to improve not just the marketing but the understanding patients have of their care and their HCP? Here are the tools:

Earshot: This is a proximity-based platform that looks at social media and targets mentions that are near by. The business can use this type of data to determine real-time sentiment near locations to measure the level and quality of interactions.

VendAsta: Monitors customer sentiment over time comparing the good and the bad of customers comments on social media. It can monitor and measure week to week to determine how they are evolving. 

Radian6: This tool will analyze social media and provide sentiment for each online post. The results are positive, negative, and neutral. This is a great tool to quickly see what is circling the bowl regarding reputation and step in to fix it. 

Swipp: Is a tool to gauge reaction to your social media campaign. This is not monitoring per se but actual widget embedded in online activities, posts, campaigns etc. Customers (think patients) are asked to share their opinion (think understand of an interaction with an HCP). It can so trending over time. 

Yext: Want to know quickly when they hate you? Yext tracks customer (think patients again) over time across a tone of networks and review websites. It analyzes reviews and mentions immediately and lets you know. 

ListenLogic: This is a social intelligence platform to supply the business with “strategic social insights. These include sentiment, demographics, and influencers. It is adaptive, meaning it will adjust to changing language and ideas. 

I see these tools and wonder how they can be used to not only monitor retail sentiment but identify the changing behavior of patients and caregivers as they navigate and work within the provider system or with their HCP. Recently Forbes had and article How Doctors Should Respond to Negative Online Reviews. Some of these tools may be to expensive for the solo practice. For a group practice or hospital these tools seem like they can be used off the shelf as described. Taking it a step further I am thinking these tools can be reworked to determine not just sentiment but to measure change in knowledge of patients. Can they measure the changing language and where and how patients are posting regarding their healthcare knowledge to determine change in understanding which may server as a marker for improved care. 

Patient care is at the center of healthcare. We also are seeing the moving of healthcare to retail competitive business and if we can apply tools that are successful in the retail world to improving our understanding of where the patient resides in their sentiment and knowledge we can improve outcomes.

Notes & Links: September 24, 2013

Stunning News on Preventable Deaths in Hospitals
Leah Binder contributor to Forbes guides us through the most recent data on preventable deaths in US hospitals. Binder provided some reference points that are worth noting and keeping on file. 

  • In 1999 98,000 patients were dying annually from preventable errors in hospitals
  • Today it appears we are seeing 440,000 deaths from preventable errors in hospitals
  • Medical errors are the third leading cause of death in the US way ahead of auto accidents, diabetes, etc.

The reason for these deaths?

These people are not dying from the illnesses that caused them to seek hospital care in the first place. They are dying from mishaps that hospitals could have prevented. What do these errors look like? The sponge left inside the surgical patient, prompting weeks of mysterious, agonizing abdominal pain before the infection overcomes bodily functions. The medication injected into a baby’s IV at a dose calculated for a 200 pound man. The excruciating infection from contaminated equipment used at the bedside. Sadly, over a thousand people a day are dying from these kinds of mistakes.

This bears repeating. Over 1,000 people a day are dying from preventable errors in hospitals in the US. 

I was not surprised to learn that hospitals are shifting the cost of these 1,000+ errors a day to the patient, taxpayer, and business buying healthcare. Well here is a surprise, a study by JAMA found that employers paid an additional $39,000 extra each time an employee had a surgical site infection. Cost shifting at it most stunning. 

As Binder points out this trend falls squarely on our shoulders since we allow lobbyist to hide errors, we fail to insist on safety when we seek care, and we don’t demand safety. I agree and perhaps once the price transparency of hospital costs is begun safety will be next. It has to be.

Social and Self-Reflective Use of a Web-Based Personally Controlled Health Management System
Lau, Dunn, Mortimer, et. al take deep prospective look at how consumers use social media and diary/personal health records of a Web-site to support their physical and emotional well-being. Compare their work to the link below on Understanding the Drivers of the Patient Experience. What would you use to understand and improve patient centric medicine at your hospital or practice? 

The authors present the issue this way:

To date, it remains unclear how we can best integrate online social networking features and self-reflective tools (such as PHRs) into the design of PCHMSs in order to maximize consumers’ uptake, improve their health behaviors and outcomes, and facilitate their long-term use. In particular, few studies have examined the mutual relationship between self and the crowd in influencing one’s health behaviors. Utilizing a multimethod approach (statistical, content analysis, and social network analysis), the aims of this paper were as follows: (1) to measure how consumers used the most common self-reflective features in a PCHMS, (2) to measure how consumers interacted within the community created by the social features of the PCHMS, and (3) to provide recommendations on ways to engineer a socially driven and self-reflective PCHMS that would improve individual health behaviors.

Self reflection is one of the key components in learning and changing behavior. Reflection in action as described by Schon is the reflection that occurs during the time a problem is bing examined and understood. It is how we add new knowledge to a problem we have and create a new set of data to act on. 

The conclusions of the authors speak to my contention that we find ways to help consumers “become familiar with their personal concerns” as in solve problems. That is what we healthcare is doing at its most basic, solving problems. And I believe the more active all participants are in solution finding, behavior, and measure the better we will find our healthcare system. 

Incorporating the two major trends in consumer eHealth research (ie, PHRs and online social networks) to inform the next generation design of consumer systems requires several novel considerations. This study provides preliminary findings that suggest a PCHMS should include both social and self-reflective features that allow consumers to become familiar with their personal concerns and connect with others to seek help. With the rapid growth of online social networking websites and PHRs, future designs of PCHMSs should explore novel ways in which we can intervene in a person’s level of self-awareness and social network and examine their efficacy as a complex social and self-reflective intervention for health.

This is an important and valuable study that points to ways EMR and Web sites can be leveraged to improve patient care and outcomes. Less market research and more outcomes driven knowledge upon which to act. 

Understanding the Drivers of the Patient Experience
Merlino and Raman writing in the Harvard Business Network Blog offer some valuable insight on how hospital administrators have NO insight. The authors examine and question the reality of being patient centric and what is the patient experience. 

Drivers of the patient experience are the new black in healthcare and critical in the brave new world of Obamacare. But are hospitals taking a serious and critical cut at what is or will drive the patient experience? I will add my own thoughts here, the patient experience is a moving target. As new healthcare rules are implemented and  health related data is released drivers will be changing and becoming more focused on care and outcomes and less on rooms with a view and curtains.  

Least we forget, the patient experience today is being driven by social media and what the patient needs to learn in order to becoming an active and receptive healthcare consumer. In my opinion it is less about market research and more about needs assessment and identifying the problems patients are seeking to solve in order to ensure hospitals and their HCP become a trusted and valuable learning source. 

Merlino and Raman state:

A 2012 industry survey asked top hospital leaders (CEOs, COOs, and others) what was necessary to improve the patient experience. The top six recommendations included: new facilities, private rooms, food on demand, bedside-interactive computers, unrestricted visiting hours, and more quiet time so patients could rest. There was one problem with them: They were not based on a systematic examination of what most patients really wanted. In other words, hospital executives wanted to focus on what they felt were important drivers of the patient experience but didn’t know for sure.

The authors list four approaches to identifying patient drivers. 

  • Advisory councils
  • Deeper look into patient experiences
  • Rounds with hospital leaders
  • Tell Stories

These are excellent tools and exercises but I worry they will only determine what is de rigueur and not the ongoing long-term needs and goals of patients.

Notes & Links: August15, 2013

Retrieving Clinical Evidence: A Comparison of PubMed and Google Scholar for Quick Clinical Searches

Shariff, Math, et. al. publishing in JMIR compares the performance of PubMed vs. Google Scholar. It was a well designed study and the data was interesting to the point that Google Scholar may be my go to search, well quick search. To bad it has the word Google in it with all the associated tracking and saving of your personal data. It’s good know another search tool works well in healthcare. 

Compared with PubMed, the average search in Google Scholar retrieved twice as many relevant articles (PubMed: 11%; Google Scholar: 22%;P<.001). Precision was similar in both databases (PubMed: 6%; Google Scholar: 8%; P=.07). Google Scholar provided significantly greater access to free full-text publications (PubMed: 5%; Google Scholar: 14%; P<.001).

Our findings are consistent with those of previous studies [12,14,15,20,21]. In preliminary testing within targeted areas of respiratory care, sarcoma, pharmacotherapy, and family medicine, Google Scholar provided better comprehensiveness (recall) but worse efficiency (precision) compared with PubMed. Similar results were seen in our study when we considered all records that were retrieved and not just the first 40. However, previous studies tested only a small number of searches (range: 1-22), compared with the 100 searches in the current study. In addition, the search queries used in previous studies were created and tested by researchers in idealized settings, which may not generalize as well to searches generated by physicians in busy clinical settings

Practicing Medicine and Practicing Social Media

Mark Senak writing on Eye on FDA revisits and interview a physician Ph.D. he met in 2010 Bertaln Mesko, MD, PhD who is a medical futurist. The links from the post above to the various sites of Dr. Bertain are nothing short of a rich rich vein of knowledge that we can all use as references or just link to now and then for newbies to learn from. Take a look at Eye on FDA page and just to all the links provided. 

Here is an section from that interview:

While social media use among those in medical practice is growing, there are a lot of concerns on the part of practitioners that range from potential lapses of privacy to concerns about the return on investment.  How would you characterize the “risk-benefit” ratio of social media use by physicians?

I think there aren’t many essential differences between real-life and online communication.  I teach my students they should behave online just like they do in the offline world.  Therefore, social media can only make processes faster and more interactive, although if your offline communication as a doctor is bad, it’s going to be the same on any social media platforms as well.

There are risks, obviously, but if you know the limitations and potential problems related to the active use of social media, you know what you can do and what you should never do online.  That was the basic concept behind writing this handbook so then medical professionals worldwide would get a clear picture about the online channels and ways of communication.

Teaching tricks and rules about the Internet should get a huge emphasis in medical school, but it doesn’t get that kind of attention.  This is why I thought there is a niche for such a handbook which includes step-by-step instructions and tutorials focusing on all the major social media channels.

Lack of Information Synthesis: One of the Most Important Causes of Medical Errors

Val Jones, MD writing on Health Policy and picked up by Better Health makes a great case on ways to reduce errors slow down and listen. Here are his three recommendations: 

The solution to the healthcare cost crisis is not to increase the speed of the assembly line belt when our physicians and nurses are already dropping items on the floor. First, stop asking them to step away from the belt to do other things. Second, put a cap on belt speed. Third, insure that you have sufficient staff to handle the volume of “product” on the belt, and support them with post-belt packaging and procedures that will prevent back up. 

Now can we use this idea and help patients improve their ability to uptake, understand, and use data/information and turn it into healthcare knowledge? Perhaps if we slow the belt down and allow the HCP to engage and pay for engagement we can drive improved outcomes. 

Notes & Links: July 25, 2013

I’m a Patient and I Read Like a Seventh Grader: This is Your Problem

Chen Sirkis writing on HealthWorks Collective makes the case for a collective need for content focused on the below average reader. Use videos, pictures, and collateral material aimed at a 15 year old. JAMA Internal Medicine published a study on readability. 

The research determined that such materials often are too complex for their intended audience. The main reason is that the average American adult reads at approximately a seventh- to- eighth-grade level.

We can do better with this audience since they are the key to driving durable improvements in outcomes. Currently we are collectively speaking in an echo chamber to ourselves. Additionally I wonder if this audience is more at risk when visiting sites that do not speak to evidence based medicine or proven science. Will they make decisions based on bad information? 

Social Media Gets Strep Throat Epidemic Under Control

Michael Sherman writing on HealthWorks Collective share an article from Clinical Infectious Diseases how 18 of 63 party goers came down with strep throat. 

After seeing a large number of posts on Facebook related to strep throat, one parent alerted the Minnesota health department that this wasn’t just a coincidence. The department then conducted phone interviews with attendees and their family members and analyzed DNA from strep bacteria samples.

I hope we see more studies show social media being part of improved identification of disease and its effect on specific populations. 

Identifying “good” and “bad” hospitals

The Incidental Economist takes a look at a new paper from JAMA Internal Medicine “Mortality for Publicly Reported Conditions Overall Hospital Mortality Rates“. The study looks at reportable data for hospital mortality rates indicate overall hospital performance. IE does a great job at reviewing this study. 

A hospital’s 30-day mortality rates for Medicare’s 3 publicly reported conditions—acute myocardial infarction, congestive heart failure, and pneumonia—were correlated with overall hospital mortality rates, even in clinically dissimilar fields. Hospitals in the top quartile of performance on the publicly reported mortality rates had greater than 5-fold higher odds of being top performers for a combined metric across 19 common medical and surgical conditions, translating into absolute overall mortality rates that were 3.6% lower for the top performers than for the poor performers. Finally, performance on the publicly reported conditions far outperformed 2 other widely used markers of quality: size and teaching status. […]

Perhaps the crap load of data we are collecting and sharing will help patients make better healthcare decisions that improves overall outcomes. The real issue will be how well we teach patients to find and appraise this data and what it means especially in light of the article on patient reading skills. We got our work cut out for us.

Shared Decision Making, Social Media, Adult Learning, Palliative Care, and Hospice a Marriage Made In Heaven

January 3, 2013 Emily Oshima Lee, M.A. and Exekiel J. Emanuel, M.D. Ph.D published a perspective article in the NEJM on “Shared Decision Making to Improve Care and Reduce Costs” Here is the link.

The authors examined the current state of shared decision making (SDM) and how the Affordable Care Act (ACA) positions and expands its benefits. 

Shared decision making (SDM) ensures that medical care aligns with patient’s preferences and values. SDM applies decision aids to inform both patients and family of various treatment outcomes which in turn improves patient knowledge, minimizes anxiety, improves outcomes while helping to manage cost. It is a win win for patient, HCP, and institution. 

But sadly SDM is under used. The authors point out a study of over 1,000 office visits with more than 3,500 medical decisions showed less than 10% of the decisions met the minimum standard for SDM. Another study showed that only 41% of Medicare patients thought their treatment reflected their preference for palliative care over more aggressive treatment. 

Section 3506 in the ACA (found here) offers funding for consensus-based standards and would certify patient decision aids. Health care providers (HCP) would be eligible for grants in this area to test SDM models and approaches that show savings, improved quality of care, etc. 

The authors point to data that demonstrates SDM reduces cost shown by the fact that nearly 20% of patients who participate in SDM choose less invasive surgical options and the conservative treatment than patients who do not use decision aids. Using SDM for just 11 procedures could yield greater than $9 billion in savings across the nation.

It is interesting that the International Patient Decision Aid Standards Collaboration has evidence-based guideline for certification that includes questions in order to aid patient to gain insight on their values and those values that affect their decisions. All of this includes up-to-date data in simple plain language including side effects and complications. 

I would recommend you read the entire piece. It is short but filled with data, information, knowledge, and recommendations. 

For me SDM is part and parcel of adult learning and social media (SM). I am in no way questioning how SDM has worked, is working, and will work. Nor am I second guessing the data. In my view SDM integrates SM and adult learning to potentiate its benefits. 

The primary principle of adult learning tells us adults will learn when they are seeking solutions to problems they want to solve. Patients facing complicated and confusing treatments are seeking solutions to serious problems. SDM steps into to help solve the problem using aids, questionnaires, and electronic media. And by all studies is successful in achieving outcomes. SDM works and is in fact helping patients solve problems while at the same time solving problems for the HCP. There is nothing to change but, can we add a little something something to improve an already good idea?

Perhaps if prior to the first SDM discussion a short inventory is performed to determine what problems the patient wants to solve, what solutions do they know, what do they think about what they know, and based on that what would they do. This exercise is designed to improve the HCP knowledge of the patient prior to the SDM discussion and aids in focusing the patient on treatment decisions. It also aids in improving the decisions. For the HCP this should be considers a needs assessment for a specific patient on a specific topic. What is determined here is information that can be used to improve SDM. 

Palliative care is an ongoing decision making exercise. In a previous post (here) I examined the role of the palliative care physician and hospice care to improve patient care. SDM improves this process and fits so well with the entire continuum of palliative care through to hospice. SDM should be part of all cancer care and should be especially valuable with those patients facing a terminal outcome. SDM is a perfect tool in palliative care but would benefit from doing the type of needs assessment mentioned above and ongoing measurement of change in patient attitude and problems. The trajectory of the disease is one that requires continual learning and discussion. 

Finally, social media can aid this entire process through connecting of patients with each other and with their HCP. These communities of sharing and exchanging knowledge and information focused on a medical need can underpin and become the foundation for understanding those problems the patient wants to solve as well as the the HCP has regarding patients. Social media becomes part of SDM  strategy as a tactic to engage more patients with the process of decision making at a more robust level. 

SM is a tool a tactic whose application is critical to achieving goals through a strategy. SDM offers a very clear set of goals and path to achieve better patient outcomes. SM can be integrated into SDM to improve the process across the board.