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Wednesday
May272015

Mom-memorials from #IHeartHIT Session at HIMSS15

Lindy Stotsky, known to many of you by her Twitter name @EMRAnswers, gave a compelling and compassionate account at HIMSS15 of how the lack of access to patient records — by clinicians, patients, and especially family members/caregivers— failed her mother during her stay in a long-term care facility. Her story, appended below, resonated with the audience and led several other people to describe how experiences trying to navigate the healthcare system without full access to information from health records spurred them to become involved in health IT.

I followed Linda with a story of how my mother became interested in examining the data in her health record only after I prodded her primary care practice to provide access, once I realized that they had implemented a patient portal.

It was notable that most of the personal stories from the audience that followed Linda & my brief talks at the #IHeartHIT session related to caring for our Moms. I want to thank Linda for sharing her story here on the Health Content Advisors site.

I Was My Mother’s “Scrap of Paper”

I’ve worked in healthcare over 25 years:  In administration through hospital credentialing and procurement, as a practice administrator shuffling through paper charts, missing codes, and reimbursement in an era of managed care.  It was during this time that my Mother became ill with CLL (Chronic Lymphocytic Leukemia), and COPD (Chronic Obstructive Pulmonary Disorder). My Mother was a staunch believer in Health CARE. She grew up believing that physicians were healers- and that nursing facilities took care of the elderly. Her decision to reside in such a facility began our descent into a world I could not have imagined.

I looked, as most caregivers do, at the inside of the building, the floors, the paint and the aesthetics. We are preoccupied, vulnerable and first impressions are everything. I judged the worthiness of the facility by its locale, the staff and our welcome.  I took for granted that “Nurses” were RN’s, having an MD as Chief of Staff meant he was there every day, and daily living meant more than struggling to survive. I didn’t know about physician track records, medical malpractice and negligence. All blue skies and daisies, until my Mom became a resident. That started our fragile dance between long-term care (LTC), emergency departments (ED), hospital, provider, back to LTC.

Thus began my advocacy. Not just for MY Mom. I was vigilant about everyone’s Mom— policing halls, looking into rooms, and answering cries for help.  I watched my Mother change from a vibrant, confident superhero to a terrified, confused and helpless patient. I took her to providers who placed her on medication, only to bring her back to a facility where medications were routinely discontinued because of cost.

I was “on call” 24/7. My Mom became my mission. My 3 year old knew where all the toys were kept in the ED, as we were frequent fliers.  “AMA” meant no ambulance was ever called. I loaded her, her wheelchair, her O2 tank, and my son into the car, and as I was running out, I grabbed a piece of notebook paper with her medications scribbled on it. This was her medical record. And I was the keeper of the key information.

My Mother passed away after three years of suffering, much of which was preventable. Not only was there a lack of communication, a culture of caring had been replaced by one of cost. Human lives took a back seat to ROI. Instead of treating aging elders with the respect and dignity they deserved after years of giving, nursing homes were nothing more than “death beds” waiting to empty. I was so engrossed in the day to day challenges, that I didn’t have time to stop and think about the larger picture of what was wrong. 

15 years later I am sorry to say that things have not changed much. My daughter recently had Thyroid Cancer. She was eager to use the patient portal to coordinate her labs, multiple tests, from all providers.  It was not that easy.  Information gaps were everywhere; care coordination was still back in the year 2000.  We need patient access. But it’s more than that. We need actionable information. It’s been nearly five years since the enactment of the ACA and little has been done to promote shared decision making. The recent proposed rule change in the Meaningful Use Stage 2 measure related to patient access and downloading of their information[1] will reduce the  threshold for Measure 2 from 5% to “at least 1 patient”  for eligible providers (EP). This change HALTS progress. WE CAN DO BETTER. My daughter is working hard to be a partner in her care, yet she has a toddler, and she’s tired, and sometimes it’s easier to give up rather than continue asking.

 Linda, Regina Holliday and me at HIMSS15

 Please help us win this. Stand up and ask —-demand electronic access to your patient record.  We should not have to carry around a tattered scrap of paper with medical information on it. Join members of The Walking Gallery[2] of Healthcare as we tell HHS, CMS, Politicians and Advocates that PATIENT LIVES MATTER.

My name is Linda Stotsky, and I share my story as a patient, a caregiver, a Mom, a daughter and a Health IT Product Manager. I am currently the Director of Business Development at LogicNets.

 I can be reached at Linda.Stotsky@gmail.com or on Twitter via @EMRAnswers

[1] http://e-patients.net/archives/2015/05/add-your-voice-meaningful-use-regulations-musnt-leave-patient-engagement-in-the-dust.html

[2] For information on TheWalking Gallery, see http://reginaholliday.blogspot.com/2011/04/walking-gallery.html.

 

Saturday
Jan042014

Healthcare IT Predictions for 2014: Patient Engagement, Interoperability and the Value of Price Transparency

As 2013 comes to a close, we are excited to welcome the insights of top healthcare IT leaders in our Healthcare IT Predictions for 2014 blog series. So far we’ve heard from David Harlow, renowned healthcare lawyer, and John Lynn, prolific blogger on healthcare IT, EMR and HIPAA. Today, we welcome Janice McCallum, managing director of Health Content Advisors. Janice is a top authority on commercial applications across stakeholder groups and relevant sectors, including providers, clinicians, payers, life sciences, government and patients. At Health Content Advisors, Janice helps publishers and suppliers of healthcare information services develop effective marketing and business development strategies for reaching today’s clinicians and consumers.


1)    What healthcare IT buzzwords will move to the center of conversation in 2014?

Patient engagement will continue to be a hot topic in 2014 because of the increased role that patients are playing in nearly every aspect of their healthcare. However, there’s not much clarity on the definition of “patient engagement”. Since the Meaningful Use program is a key driver of patient engagement initiatives; and since IT infrastructure is critical to Meaningful Use implementation, patient engagement is still very much a health IT issue. I’ve said many times that providing patients with access to their data is the most important element for providers that want to engage patients. But, patient engagement is just a first step in a process to rebalance the current information asymmetry between physicians and patients.

Leonard Kish coined the phrase: “Patient Engagement is the Blockbuster Drug of the Century” last year.  I agree, but due to the range of interpretations of what it encompasses, I expect “patient engagement” to be the most overused and least understood buzzword in 2014.

2)    Jacob Reider has taken over for Farzad Mostashari as Interim National Coordinator post at the ONC; what does the industry need most from the next leader?

Given the political environment, our next National Coordinator for Health IT will need have a rare mix of health IT knowledge, political savvy and management skills. To respond to concerns from provider organizations, I would recommend that the next ONC leader have some experience within a provider organization; ideally, someone who has dealt with implementing reporting systems for early stage Meaningful Use. Better yet, I’d like to see a new ONC leader who wants to put him or herself out of a job by helping to consolidate the various quality-reporting programs within HHS and encouraging industry associations to take over the leadership function for health IT standards.

3)    What is your top prediction for Healthcare IT in 2014?

My top prediction is that the topic of price transparency will be paramount. Even though price is a business rather than an IT issue, provider IT systems need to be capable of providing reliable price estimates to patients, since an increasing number of providers require patients to pre-pay their copay portion of medical bills at check-in. We can’t expect patients to approve an unknown charge to their credit card or their bank account without some reasonable estimates of costs, although I have heard of plans by some providers to do just that! Price transparency also helps inform consumer choices about where to seek care and what care plans to choose.

4)    What initiatives do healthcare stakeholders need to prioritize in order to reach true interoperability in 2014?

I’m not even sure how to define true interoperability. Common data standards are a huge part of facilitating data interoperability. But, different stakeholder groups will continue to have different data standards, especially when the different parties include research data, clinical data, patient-reported data and sensor data. Furthermore, a big part of the health information exchange problem stems from the incomplete nature of patient records in any single institution or network, errors in patient records, and the lack of unique IDs. The solution has to involve patient review and control of his/her own records.

This post was originally published at the Orion Health Blog on December 3, 2013.

Thursday
May302013

Health Data Meaningful Updates

I’ve been so busy with guest posts and speaking engagements in the past couple of months that I’ve neglected updating my own site. I’ll try to rectify that now with condensed versions of some recent activity below.

       I.            Navinet Expert Interview Series, March 2013

Laura McCaughey and I discuss big data, population health, health IT, shared decisionmaking, the Accountable Care Act and medical cost trends, all in under 2 pages! A few outtakes:

 

Laura: What do you see as the biggest developments in HIT in the next year?

Janice: “I think the biggest developments will occur as provider organizations build upon the population health analysis that got its start with the foundation laid by the Meaningful Use framework. In particular, we’ll see more analyses of treatment plans, costs, and outcomes by segments of patients. The segmentation possibilities are almost endless. When combined with genomic data and other nontraditional types of data, they will bring us a long way toward the goal of personalized medicine.”

Laura: There’s been so much talk around big data for a variety of industries, but what does it mean for the healthcare industry?

Janice: “…to benefit from many of the existing Big Data technologies and modeling that are being used in retail, financial services, and other industries, the health care industry needs to improve the amount of collaboration at the level of sharing data sets and sharing results from previous analyses. Obviously, there are some limitations on how patient registries can be shared, but there is good progress in creating large research datasets that include de-identified patient data. In fact, the Agency for Healthcare and Quality recently released a registry of patient registries (RoPR).”

Laura: Last year you identified the accountable care organization (ACO) model as one of the major factors to shape care collaboration. How much of that has happened, and how much further do we need to go? 

Janice: “I think most ACOs have just scratched the surface in establishing a new model of providing care and involving patients in decisions about their care. It will take some time for the culture of physician-patient communication to change. Furthermore, the tools that have been available to educate and support clinicians and patients haven’t kept up with the organizational changes. In particular, patient education/patient information tools and materials are sorely lacking for patients who want to take a more active role in their health and medical care. I cringe every time I hear that patient education materials have to be prepared to meet the reading level of the “lowest common denominator” in the spectrum of patients. While I understand that some public health messages must be understandable to a very broad spectrum of the population, the same rationale doesn’t apply to all information made available to patients.”

Laura: What are some of the key components that a HIT platform needs in order to be successful in today’s changing healthcare landscape? 

Janice: “ACOs and the so-called patient-centered medical home (PCMH) concept should put a high priority on configuring their systems so that patients can both contribute information and download information from their records. This way patients can act as their own up-to-date “mobile record.” Not all patients are ready to take on this role, but that’s not a good reason to prevent those patients who are ready from improving access to information that can improve the quality of care they receive and possibly reduce the cost. The early innovators among the patient populations who actively track, update, and analyze their personal health records can serve as models for the “laggards” who will wait until the benefits become more obvious and the tools become easier to use.

Laura: The Accountable Care Act (ACA)will soon be implemented, and millions of newly insured Americans will be receiving care that did not previously. How are payers planning to handle this? 

Janice: “Apart from having designed new plans that are ready to be promoted and sold on health insurance exchanges (now called health insurance marketplaces), I can only make an educated guess on how payers are planning to handle the new populations of patients who will be insured as a result of the ACA. Note, I have a different view on how much the newly insured will increase the demand for medical services, compared with the conventional wisdom, which estimates that the previously uninsured will flood primary care physicians with pent-up need for medical care. I agree that physician practices will enroll many new patients in areas where there had been a large number of uninsured. However, I think that a large number of the newly insured patients will have so much experience managing their own care that they won’t overburden the provider organizations as much as some analysts predict. Plus, many of the insurance plans available to these populations will include significant co-pays (significant is in the eye of the beholder in this case!). With high co-pays, I predict that populations that were unable to afford insurance coverage in the past will not be able to afford most co-pays and will find ways to reduce their costs of care whenever possible by using retail clinics and other lower-cost options, such as telehealth.”

Laura: The medical cost trend has slowed considerably in the past few years. What can providers and payers do to help keep costs from rising?

Janice: “The best advice I have to keep costs from rising is to provide more information about costs to patients before they choose a course of treatment. Providing more information about the likely benefits and risks of treatment plan options under consideration to patients will also increase the patient’s level of commitment to the chosen treatment plan. Moving to this “shared decision-making” model will likely reduce costs in the short term, although that’s not a sure bet, since cost is not the only criterion that patients will consider.

As I consider the topics we’ve just discussed, it occurs to me that the most significant move that payers could make to slow the rise in costs would be to simplify health insurance plans so that costs are far more transparent. Some payers are ahead of others in offering data on costs. For instance, Aetna offers an average estimated cost by region in its Aetna Navigator tool. Although not complete, Aetna’s move in the direction of providing cost information is a step in the right direction.”

 See full interview at: http://www.navinet.net/blog/2013-navinet-expert-interview-series-janice-mccallum-health-content-advisors


     II. Making Health Data Healthier: How to Determine What’s Valuable and How to Use It

A dialogue between Geeta Nayyar, MD, MBA, Chief Medical Information Officer at AT&T, and me about managing and leveraging health data for the benefit of providers and patients.

On the topic of Meaningful Use:

Geeta: In your opinion, how does Meaningful Use help advance the value of data in medical research and clinical applications?

Janice:  “The Meaningful Use incentive program has jump-started the adoption of electronic health records and set the framework for coordinating a fragmented group of providers, health IT vendors, and analytics companies. The common sets of data to be collected, tracked, and analyzed set the stage for greater collaboration between providers/clinicians, payer organizations, medical researchers and patients.

...

Frankly, I wish the value of data standards and collaboration were so obvious that providers and payers would develop industry standards without external pressure. Since that wasn’t the case prior to the Meaningful Use program, I would say that we’ve seen great strides in enhancing the value of data available for medical and clinical applications in a short period of time.”

 

See full interview at:

http://networkingexchangeblog.att.com/enterprise-business/making-health-data-healthier/.

 

   III.            Webinar on Meaningful Use for Medical Librarians

I recently gave an hour-long webinar, Meaningful Use: A Means to an End, to the National Network of Libraries of Medicine (NN/LM), New England Region.  Along with providing some context to the Meaningful Use program, the webinar focused on roles for medical librarians in implementing meaningful use programs, especially elements that relate to patient engagement, quality measures, and clinical decision support.

Please contact me (janice@healthcontentadvisors.com) if you are interested in a customized version of the webinar/presentation for another audience.

Tuesday
Apr032012

Secondary Data Usage in Healthcare

I was guest speaker at the March 22, 2012 “Let’s Talk HIT” series hosted by Scratch Marketing & Media in Cambridge, MA. The topic I chose was Secondary Data Publishing in Health. Health Content Advisor’s parent company, InfoCommerce Group, has a long history of guiding business media companies in constructing data products, but increasingly we are finding interesting examples of secondary data products that develop as a by-product of technology companies. Electronic Health Records (EHRs) represents one of the more compelling examples of information technology that has the potential to spawn a new generation of data products.

Scratch Marketing has posted the video of the talk, which was structured as an interactive group discussion, in 8 parts. See their YouTube page for the list of segments: http://bit.ly/H9Wjk9.

See the event recap by Lizzie McQuillan at Scratch Marketing here:

http://scratchmm.com/2012/03/event-recap-let%E2%80%99s-talk-hit-with-janice-mccallum/

Also, for a provocative view, read Marya Zilberberg, MD, MPH’s takeaway from the evening’s discussion:

http://evimedgroup.blogspot.com/2012/03/how-our-healthcare-spending-is-like.html

Thanks again to Scratch and the many Boston-area (stretching all the way out to the Berkshires!) health IT, public health, healthcare publishing, entrepreneurs, and marketing experts who attended and participated in the discussion. Scratch Marketing added Twitter handles to the video, which helps tremendously in identifying each speaker.

Thursday
Dec222011

Event Planning for 2012

At this eventful time of year, I thought I would hold off from sending a long post and instead focus on conference and event schedules. Don’t worry, the year-end review/look ahead post will be forthcoming after the 1st of the year.

There are so many good events to choose from, especially in the healthcare and health IT spaces, that it’s difficult to decide where to devote time-constrained resources. The Events page that we added to the Health Content Advisors site earlier this year lists all major events that I or my colleagues will be attending. At this point, only past 2011 events are listed, but we’ll update the list over the holiday period.

Somehow, I chose a fantastic mix of live events to attend last year and I hope to make a repeat appearance at all of these events in 2012. I’m making plans for #HIMSS12, February 20-24 in Las Vegas now and hope to add the SIIA IIS conference, January 24-25 in New York to the list for 2012.

When we update the Events page, we’ll add links to blog posts, pictures and videos from the events. As a preview, here’s a short video interview I did with HCPlive.com at the Health2.0 conference in San Francisco:

Also, please check out my previous post on Using Game Dynamics that includes a link to a video of my session at Data Content11 that focused on using game dynamics in market research and provides examples from healthcare research, including PatientsLikeMe.   

That’s it for now. Happy holidays and best wishes for a 2012 that exceeds your expectations!

Janice