Patient Advocacy & Digital Health


They say that if we want the foundation of what matters, look toward the truths of childhood. I agree! Dr. Seuss is one of my standbys for distilling things down to the essence of what we need to focus on. As healthcare spins faster and faster into the future, we all look for stability and the ability to connect the #DigitalHealth age with the patients and their varied needs. Who needs our help in making this connection?

  • The acute sufferer
  • The chronic journeyer
  • The worried well
  • The elderly without support or guidance
  • The young without an advocate
  • The confident with bad information
  • Everyone

One of my lights in #DigitalHealth and the true connection to patient advocacy is Dr. David Scher. David’s wealth of experience combined with his passion for #DigitalHealth and compassion for the sick creates a story worth telling. David focuses on #DigitalHealth not as something to use because it’s new or shiny, but as a tool to be used to fill needs and do so in ways that add value to the patient’s experience. It’s a simple, yet important distinction as we work to change the signal to noise ratio in healthcare today.

David wrote “The Medical App is a Patient Advocacy Tool” back in 2012 and it remains completely relevant even today. He calls out to what I consider to be the definition of patient advocacy by the respected Trisha Torrey:

 …patient advocacy regards any activity which ultimately benefits a patient. Using that definition, it can apply to caregiving for an individual patient, to groups that develop policies and advice that help patients, to government groups that develop legislation to improve systems or processes for patients.

Of course, we’ve moved beyond just medical apps since 2012 and Dr. Scher’s thoughts have kept pace and remained right on target. In his “5 ways digital health technologies are patient advocacy tools,” his lists his top five ways #DigitalHealth tools work well for patient advocacy:

  1. They can help prepare for the office visit.
  2. Patient education content.
  3. Social media.
  4. Connections to caregivers.
  5. Provide for better continuity of care.

We must consider these five and continue to make connections to the ever-evolving gamut of #DigitalHealth tools – we must curate, review, and select the best to be used in our goal of helping the patient. But how?

Resources abound for finding and dissecting new #DigitalHealth tools. colleagues such as Paul Sonnier ( @Paul_Sonnier) and John Nosta (@JohnNosta) spend considerable effort sharing and curating all the is #DigitalHealth. It’s up to each of us to use these resources and make the “final mile” connection to the patient needs.

Recently Trisha published, “Physicians Buying In – Bring on the Patient Advocates!,” discussing the great news about yet another shift in healthcare. She sums it up succinctly:

When the presence of a patient advocate is appreciated not solely by clients, but by clients’ providers too – that’s how we know we have “arrived” and are bringing value to the entire system.

We all should examine why we are part of healthcare – a job? Passion to help others? As a patient thrust into the whirlpool? A noble profession? Regardless, the mission should point toward the goal of helping. Be that via curing, alleviating, giving hope, transitioning, or reaching for the next great jump in healthcare, we are all in this together.

Consider the following questions to generate conversations:

  • Do #DigitalHealth tools enhance, enable, expand patient advocacy? How? Examples?
  • Are #DigitalHealth tools essential for helping patients or will other channels suffice? Why or why not?
  • How do you view the new symbiotic relationship between clinicians and patient advocates? Will this become de rigueur?
  • In your role, how do you/can you bring the best #DigitalHealth tools together with real patient advocacy while creating solid engagement?


“Physicians Buying In – Bring on the Patient Advocates” Trisha Torrey, APHA Blog, Feb 1, 2016.

Accessed March 7, 2016

“The Medical App is a Patient Advocacy Tool” David Lee Scher, M.D., The Digital Health Corner, May 8, 2012.

Accessed March 7, 2016

“5 Ways Digital Health Technologies are Patient Advocacy Tools” David Lee Scher, M.D., Cardiology News, Jan 2, 2015.

Accessed Match 8, 2016

“Error 404 in the Patient Advocacy Community” Regina Holliday’s Medical Advocacy Blog, May 21 2012.

Accessed March 7, 2016

“Is there an advocate in the house? The role of health care professionals in patient advocacy” Dr. L Schwartz, Journal of Medical Ethics, May 25, 2001.

Accessed March 8, 2016

Previously published on #hcldr, the leading international Healthcare Leadership blog & chat. for more information.

The Beautiful Gift With an Ugly Price Tag

Complex medical needs find “the threat of bankruptcy or homelessness from serious, rare, chronic, terminal, or catastrophic illness is very real & present. It’s not perceived.” Shouldn’t we all take a moment and find ways to turn this around? It CAN be done. #hcldr pros have ideas! YOU have ideas!


This article has been circulating around the web quite a bit. I’ve seen it shared on both Facebook & Twitter. For some, it’s mind-blowing; others not-so-much.  Money isn’t everything, but it can be influential. Yet it’s not all there is.

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Patient Can Be A Loaded Word

Nikki discusses labels in healthcare within the context of rare disease advocacy. This follows closely from the #hcldr discussion a couple weeks ago, “Names and Labels in Healthcare” that covered this topic in a general sense. Nikki’s work tracks the previous discussion in a wonderful way. Don’t miss reading her superb commentary.


The announcement of this year’s theme for NORD‘s (National Organization for Rare Disorders) Rare Disease Day 2016 gave me something to mull over this morning. I’m going to play the devil’s advocate here for just a moment over this year’s choice of theme & slogan.

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Privacy: Preventing Harm or Innovation

Great privacy talk on #hcldr this week – please take a look at the excellent blog and do drop in on Tue, 830p E for a great chat – you’ll be glad you did.


Key - nikcnameBlog post by Pam Ressler, Jodi Sperber, Wendy Sue Swanson and Colleen Young

In health, do our assumptions and experience regarding privacy prevent harm or impede innovation? This is what we will address at Stanford Medicine X in September during our panel discussion with Susannah Fox, Pam Ressler, Wendy Sue Swanson, Jodi Sperber and Colleen Young. But first, we’re flipping the panel to jump start the conversation, collecting and sharing resources (such as this Flipboard collection), and most importantly gathering knowledge from our communities like #hcsmca and #hcldr.

In July, we asked #hcsmca-ers how they define privacy, in particular on social media and the information we choose to share. Using the term “privacy calculus,” we queried how people calculate the benefit vs. risk when sharing health information online. As anticipated, the #hcsmca community had a lot of wisdom to share. (See the #hcsmca chat summary.)

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Patient Satisfaction is not Patient Advocacy: How Digital Health Technology can Help

As usual, David shares intuitive comments about a critical issue. The distinction should be obvious – but clearly it’s not. We all need to reflect and adjust course when it comes to patient satisfaction and the need for proper patient advocacy without shortcuts.

The Digital Health Corner

Editor’s note: While the format of this piece is doesn’t conform to the ‘five points’ you normally see, the ties to clinical and digital remain. We will return to the usual format in the next offering.

Patient advocacy and patient satisfaction are both popular terms these days, but they are far from synonymous.  Patient advocacy is defined by Wikipedia as “An area of lay specialization in healthcare concerned with patient education about the use of health plans and how to obtain needed care.”  This is considerably narrower than what I consider a more appropriate description by Trisha Torrey, “patient advocacy regards any activity which ultimately benefits a patient…it can apply to caregiving for an individual patient, to groups that develop policies and advice that help patients, to government groups that develop legislation to improve systems or processes for patients.”

Patient Satisfaction   While patient satisfaction might intuitively seem…

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Data Path - Ryoji IkedaBlog post by Joe Babaian (previously published on #hcldr)

In healthcare, interoperability is the ability of different information technology systems and software applications to communicate, exchange data, and use the information that has been exchanged.  – HIMSS

Information is not knowledge.  – Albert Einstein

Ripped from recent headlines:

Group Seeks Federal Standards for HIT Interoperability – Bipartisan Policy Center

EHR Interop With Long-Term Care Providers Wanted, but Who Will Pay? – CMS

Before that genomics revolution, we need interoperability…  – MedCity News

Why Jonathan Bush thinks big vendors like Epic, Cerner will ‘collapse’ – Healthcare Dive

EHR vendors slammed for interoperability struggles. – CIO

The biggest challenge we face is liberating patient data from EHR systems to make it interoperable. – David Kendrick

Unless you’ve been totally detached from the healthcare system, you’ve seen and heard the buzz around interoperability. Actually, the lack thereof. No matter if you are a hospital CEO, a patient with a sore throat, or a healthcare policy wonk, you know that things are dire.

Let’s look at the HIMSS definition – the key parts are exchanging the data and using the data that has been exchanged. As Einstein noted, data alone is not knowledge and that is exactly where we find ourselves today. After you visit the urgent-care clinic and get diagnosed with strep, do the labs, diagnosis, and treatment automatically show up at your PCP, the ED the next day when you get sicker, or the ambulance crew that finds you collapsed at work? No.

The largest EHR vendors are competing ferociously for market share. Recently Cerner, to much surprise, beat out Epic for the major VA/Department of Defense contract worth $4.3 billionatheanahealth CEO Jonathan Bush notes:

The opportunity that came with the DoD contract was to build a national health information network that could ensure patients’ health information could follow them no matter where they went. Given the DoD’s decision, I’m not optimistic we will see this.

What do we need to do? The calls for “fixing” this are myriad, but it’s not happening at anywhere the scale needed. The government calls for interoperability every time it’s discussed, yet contracts like the Cerner deal are based on incumbent technology with many promises. Senator Lamar Alexander, chairman of the Senate Health, Employment, Labor and Pensions Committee recently said:

Information blocking is one obstacle to interoperability

Senator Alexander’s comment is the tip of the iceberg. All of this matters for reasons that are very basic to our healthcare system, economy, and growth. When I say “Access” think “Coherent, useful, and meaningful access” vs a printout or data file that’s just so proprietary as to be opaque:

  • Access to your data at all times allows for prompt continuity of care
  • Access to your data allows for huge cost savings in non-duplicated care, diagnosis, investigations
  • Access to your data allows for medical teams to use, learn from, and more properly integrate lessons learned from your care
  • Access to your data allows for healthcare information to be analyzed in aggregate on a massive scale for trends and emergent issues

You’ve heard enough. Now is the chance to discuss and look at your ideas, solutions, and paths to fixing this.  Do consider the implications along with the community of professionals, entrepreneurs, patients, clinicians, administrators, lurkers, and advocates! Consider the following key questions:

  • T1: How urgent is the need for true healthcare data interoperability and why?
  • T2:What experiences have you had with lack of interoperability?
  • T3: Do you see incumbent providers willingly getting “on board” or will further market forces/regulation come into play?
  • T4:What can we as healthcare leaders do today to change the current state of interoperability? Can it be done?


HIMSS Dictionary of Healthcare Information Technology Terms, Acronyms and Organizations, 2nd Edition, 2010, Appendix B, p190., accessed August 01 2015

“Group Seeks Federal Standards for HIT Interoperability.” Greg Slabodkin, HealthData Management, July 30 2015, accessed July 30 2015

“EHR Interoperability With Long-Term Care Providers Wanted, but Who Will Pay?” Ken Terry, iHealth Beat, July 2015, accessed August 01 2015

“Before that genomics revolution, we need interoperability, patient engagement and privacy.” Meghana Keshavan, MedCity News, July 27 2015, accessed July 30 2015

“Why Jonathan Bush thinks big vendors like Epic, Cerner will ‘collapse’.” Katie Bo Williams, Healthcare DIVE, March 4 2015, accessed August 01 2015

“EHR vendors slammed for interoperability struggles” Kenneth Corbin, CIO, July 24 2015, accessed August 01 2015

“CIOs ‘surprised’ at Cerner DoD win.” Michelle Notebloom, Healthcare IT News, July 31 2015 Accessed Aug 02. 2015, accessed August 01 2015

“Cerner beats out Epic for Massive 10 4.3 billion year DoD contract” reddit discussion, July/August 2015, accessed August 02 2015

Image Credit 

data.path by Ryoji Ikeda

New Systems – The Future of Hospitals & Institutions

#hcldr this week!


Patient Care Area inside a vacant psychiatric hospital Patient Care Area inside a vacant psychiatric hospital

Blog by Dave Chase, Leonard Kish and Colin Hung

On Tuesday June 9th, the #HCLDR community gathered to discuss “The New Health Ecosystem” based on the #95Theses work of two healthcare luminaries: Dave Chase and Leonard Kish. [Note: if you missed that chat you can read the highlights on our Storify Summary]. Both Kish and Chase were honored guests on our June 9th chat.

That chat was so successful and generated so many interesting tweets that we decided to schedule an encore. So this week on HCLDR we will be exploring the “New System” section of the #95Theses:

  • #90. Hospitals have provided amazing service for the last 100 years, but location is becoming less important for healthcare. Care can happen almost anywhere at lower cost. What conditions hospitals treat, and how hospitals serve their communities will…

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