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Visible and Useful Patient Data in an Era of Interoperability Failure

Posted on October 13, 2017 I Written By

Healthcare as a Human Right. Physician Suicide Loss Survivor. Janae writes about Artificial Intelligence, Virtual Reality, Data Analytics, Engagement and Investing in Healthcare. twitter: @coherencemed

Health record interoperability and patient data is a debated topic in Health IT. Government requirements and business interests create a complex exchange about who should own data and how it should be used and who should profit from patient data. Many find themselves asking what the next steps in innovation are. Patient data, when it is available, is usually not in a format that is visible and useful for patients or providers. The debate about data can distract from progress in making patient data visible and useful.

Improvements in HealthIT will improve outcomes through better data interpretation and visibility. Increasing the utility of health data is a needed step. Visibility of patient data has been a topic of debate since the creation of electronic health records. This was highlighted in a recent exchange between former vice president Joe Biden and Judy Faulkner, CEO of Epic Systems.

Earlier this year at the Cancer Moonshoot, Faulkner expressed her skepticism about the usefulness of allowing patients access to their medical records. Biden replied, asking Faulkner for his personal health data.

Faulkner was quick to retort, questioning why Mr. Biden wanted his records, and reportedly responded “Why do you want your medical records?” There are a thousand pages of which you understand 10.”

My interpretation of her response-“You don’t even know what you are asking. Do not get distracted by the shiny vendor trying to make money from interpreting my company’s data”

As reported in Politico Biden–and really, I think that man can do no wrong, responded, “None of your business.”

In the wake of the Biden Faulkner exchange, the entire internet constituency of Health IT and patient records had an ischemic attack. Since this exchange we’ve gone on to look at interoperability in times of crisis. We’ve had records from Houston and Puerto Rico and natural disasters. The importance of sharing data and the scope of useful data is the same. 

During what I call the beginning of several months of research about the state of interoperability I started reading about the Biden and Faulkner exchange. This was not the first time I had been reading extensively about patient data and if EHR and EMR data is useful. It just reminded me of the frustrations I’ve heard for years about EHR records being useless. Like many of us, I disappeared down the rabbit hole of tweets about electronic health records for a full day. Patient advocates STILL frustrated by the lack of cooperation between EHR and EMR vendors found renewed vigor; they cited valid data. Studies were boldly thrown back and the exchange included some seriously questionable math and a medium level of personal attack.

Everyone was like, Are we STILL on this problem where very little happens and it’s incredibly complex? How? How do we still not have a system that makes patient data more useful? Others were like, Obviously it doesn’t make sense because A) usefulness in care, and B) money.

Some argued that patients just want to get better. Others pointed out that acting like patients were stupid children not only causes a culture of contempt for providers and vendors alike, but also kills patients. Interestingly, Christina Farr CNBC reported that the original exchange may have been more civil than originally interpreted. 

My personal opinion: Biden obviously knew we needed to talk about patient rights, open data, and interoperability more. It has had more coverage since then. I don’t know Faulkner, but it sounds like a lot of people on Twitter don’t feel like she is very cooperative. She sounds like a slightly savage businesswoman, which for me is usually a positive thing. I met Peter from Epic who works with interoperability and population health and genomics and he was delightful.

Undeniably, there is some validity to Judy’s assertion that the data would not be useful to Biden; EHR and EMR data, at least in the format available from the rare cooperative vendors, is not very useful. They are a digital electronic paper record. I am willing to bet Biden–much as I adore the guy–didn’t even offer a jump drive on which to store his data. The potential of EHR data visualization to improve patient outcomes needs more coverage. Let’s not focus on the business motivations of parties that don’t want to share their data, let’s look at potential improvements in data usefulness. 

It was magic because I had just had a conversation about data innovation with Dr. Michael Rothman. An early veteran in the artificial intelligence field, Dr. Rothman worked in data modeling before the AI winter of the 80s and the current resurgence in investment and popularity. He predates the current buzz cycle of blockchain and artificial intelligence everything. With many data scientists frustrated by an abandonment of elegant, simple solutions in favor of venture capital and sexy advertising vaporware, it is timely to look at tools that improve outcomes.

In speaking with Dr. Rothman, I was surprised by the cadence of his voice, he asked me what I knew about the history of artificial intelligence, and I asked him to tell his data story. He started by outlining the theory of statistical modeling and data dump in neural net modeling. His company, PeraHealth, represents part of the solution for making EMR and EHR data useful to clinicians and patients.

The idea that data is going to give you the solution is, in a sense, slightly possible but extremely unlikely. If you look at situations where people have been successful, there is a lot of human ingenuity that goes into selecting and transforming the variables into meaningful forms before building the neural network or deep learning algorithm. Without a framework of understanding, a lot of EHR data is simply a data dump that lacks clinical knowledge or visualization to provide appropriate scaffolding.  You do need ingenuity, and you do need the right data. There are so many problems and complexities with data that innovation and ingenuity is lagging behind with healthIT.

The question is – is the answer you are looking for in the input data? If you have the answer in the data, you will be able to provide insights based on it. Innovation in healthcare predictions and patient records will come from looking at data sets that are actually predictive of health.

Dr. Rothman’s work in healthcare started with a medical error. His mother had valve replacement surgery and came through in good shape. Although initially she was recovering quickly, she started to deteriorate after a few days. And the problem was that the system made it difficult to see.  Each day she was evaluated.  Each day her condition was viewed as reasonable given her surgery and age.  What they couldn’t see was that each day she was getting worse.  They couldn’t see the trend.  She was discharged and returned to the ED 4-days later and died.

As a scientist, he recognized that the hospital staff didn’t have everything they needed to avoid an error like this. He approached the hospital CEO and asked for permission to help them solve the problem. Dr. Rothman explained, I didn’t feel that the doctors had given poor medical care, this was a failure of the system.

The hospital CEO did something remarkable. They shared their data. In a safe system they allowed an expert in data science to come in to see what he could find in their patient records, rather than telling him he probably wouldn’t understand the printout. The hospital was an early adopter of EHR records, so they were able to look at a long history of data to find what was being missed. Using vital signs, lab tests, and importantly, an overlooked source of data, nursing notes, Dr. Rothman (and his brother) found a way to synthesize a unified score, a single number which captures the overall condition of the patient, a single number which was fed from the EMR and WOULD show a trend.  There is an answer if you include the right data.  

Doctors and nurses look at a myriad of data and synthesize it, to reach an understanding.  Judy is right that a layman looking at random pieces of data will not likely gain much understanding, BUT they may.  And with more help they might.  Certainly, they deserve a chance to look.  And certainly, the EMR and EHR companies have an obligation to present the data in some readable form.

Patients should be demanding data, they should be demanding hospitals give them usable care and normalize data based on their personal history to help save their lives.

Based on this experience, Michael and Steven built the Rothman Index, a measure of patient health based on analytics that visualizes data found in EHRs. They went on to found PeraHealth, which enables nursing kiosks to show the line and screens to see if any patients decline. In some health systems, an attending physician can get an alert about patients in danger. The visualization from the record isn’t just a screen by the patient, it is also on the physicians and nurses’ screens and includes warnings. Providers have time to evaluate what is wrong before it is too late. The data in the health record is made visual and can be a tool for providers.


Visualization of Patient Status with the Rothman Index and Perahealth

Is Perahealth everywhere? Not yet. For every innovation and potential improvement there is a period of time where slow adopters wait and invest in sure bets. Just like interoperable data isn’t an actuality in a system that desperately needs it, this is a basic step toward improving patient outcomes. Scaling implementation of an effective data tool is not always clear to hospital CMIO and CEO teams.  The triage of what healthIT solution a healthcare system chooses to implement is complex. Change also requires strong collaborative efforts and clear expectations. Often, even if hospital systems know something provides benefits to patients, they don’t have the correct format to implement the solution. They need a strategy for adoption and a strong motivation. It seems that the strongest motivations are financial and outcomes based. The largest profit savings with the minimum effort usually takes adoption precedent. This should also be aligned with end users- if a nurse uses the system it needs to improve their workflow, not just give them another task.

One of the hospitals that is successfully collaborating to make patient data more useful and visual is Houston Methodist. I spoke to Katherine Walsh, Chief Nursing Officer from Houston Methodist about their journey to use EHR data with Perahealth. She explained it to me- Data is the tool, without great doctors and nurses knowing the danger zone, it doesn’t help. This reminded me of Faulkner’s reaction that not all patient data is useful. Clinical support should be designed around visible data to give better care. Without a plan, data is not actionable. Katherine explained that when nurses could see that the data was useful, they also had to make sure their workflow included timely records. When EHR data is actually being used in the care of patients, suddenly data entry workflow changes. When nurses and doctors can see that their actions are saving lives, they are motivated.
The process to change their workflow and visualize patient data did not happen overnight. In the story of Houston Methodist’s adoption of Perahealth, Walsh said they wanted to make sure they helped doctors and nurses understand what the data meant.  “We put large screens on all the units- you can immediately see the patients that are at risk- it’s aggregated by the highest risk factor.” If you are waiting for someone to pull this data up on their desktop, you are waiting for them to search something. But putting it on the unit where you can see it makes it much easier to round, and makes it much easier to get a sense of what is going on. You can always identify what and who is at risk because it’s on a TV screen. The Houston Methodist team showed great leadership in nursing informatics, improving outcomes and using an internal strategy for implementation.

They normalize the variants for each person- a heart rate of 40 for a runner might be normal- then on the next shift 60 seems normal- then at 80 it also seems normal- you can tell them when you want an alert. To help with motivation, Walsh needed to make the impact of PeraHealth visual. They hung 23 hospital gowns around a room, representing the patients they had saved using the system.
The future of electronic health records will be about creating usable data, not just a data dump of fields. It is transforming EHRs from a cost hemorrhage to a life-saving tool through partnerships. Physicians don’t want another administrative task or another impersonal device. Nurses don’t want to go through meaningless measures and lose track of patients during shift changes. Show them the success they’ve had and let the data help them give great care.

Hospital administrators don’t want another data tool that doesn’t improve patient outcomes but has raised capital on vaporware. Creators don’t want more EHR companies that don’t know how to work with agile partners to create innovation.

The real ingenuity is in understanding – what data do you need? What data do patients need? Who can electronic healthcare record companies partner with to bridge the data divide?

We can bridge the gap of electronic health records that aren’t legible or useful to patients and create tools to save lives. Tools like those from PeraHealth are the result of a collaborative effort to take the data we have and synthesize it and visualize it and let care providers SEE their patients.  This saves lives.

Without this, the data is there, it’s just not usable.

Don’t just give the patients their data, show them their health.

KLAS Summit: Interoperability Doing the Work to Move HealthIT Forward

Posted on October 9, 2017 I Written By

Healthcare as a Human Right. Physician Suicide Loss Survivor. Janae writes about Artificial Intelligence, Virtual Reality, Data Analytics, Engagement and Investing in Healthcare. twitter: @coherencemed

I had the privilege of attending the KLAS research event with leaders in patient data interoperability. From the ONC to EHR vendors- executives from EHR vendors and hospital systems made their way to a summit about standards for measurement and improvement. These meetings are convened with the mutual goal of contributing to advancement in Health IT and improvement of patient outcomes. I’m a big fan of collaborative efforts that produce measurable results. KLAS research is successfully convening meetings everyone in the HealthIT industry has said are necessary for progress.

The theme of Interoperability lately is: Things are not moving fast enough.

The long history of data in health records and variety in standards across records have created a system that is reluctant to change. Some EMR vendors seem to think the next step is a single patient record- their record.

Watching interactions between EHR vendors and the ONC was interesting. Vendors are frustrated that progress and years of financial investment might be overturned by an unstable political atmosphere and lack of funding. Additionally, device innovation and creation is changing the medical device landscape at a rapid rate. We aren’t on the same page with new data and we are creating more and more data from disparate sources.

Informatics experts in healthcare require a huge knowledge base to organize data sharing and create a needs based strategy for data sharing. They have such a unique perspective across the organization. Few of the other executives have the optics into the business sense of the organization. They have to understand clinical workflows and strategy., as well as financial reimbursement. Informatics management is a major burden and responsibility- they are in charge of improving care and making workflows easier for clinicians and patients. EMR use has frequently been cited as a contributor to physician burnout and early retirement. Data moving from one system can have a huge impact on care delivery costs and patient outcomes. Duplicated tests and records can mean delayed diagnosis for surgeons and specialists. Participants of the summit discussed that patients can be part of improving data sharing.

We have made great progress in terms of interoperability but there is still much to be done. Some of the discussion was interesting, such as the monumental task the VA has in patient data with troop deployment and care. There was also frank discussion about business interests and data blocking ranging from government reluctance to create a single patient identifier to a lack of resources to clean duplicated records.

Stakeholders want to know what the next steps are- how do we innovate and how do we improve from this point forward? Do we create it internally or partner with outside vendors for scale? They are tired of the confusion and lack of progress. Participants want more. I asked a few participants what they think will help things move forward more quickly. Not everyone really knows how to make things move forward faster.

Keith Fraidenburg of CHIME praised systems for coming together and sharing patient data- to improve patient outcomes. I spoke with him about the Summit itself and his work with informatics in healthcare. He discussed how the people involved in this effort are some of the hardest working people in healthcare. Their expertise in terms of clinical knowledge and data science is highly specialized and has huge implications in patient outcomes.

“To get agreement on standards would be an important big step forward. It wouldn’t solve everything but to get industry wide standards to move things forward the industry needs a single set of standards or a playbook.”

We might have different interests, but the people involved in interoperability care about interoperability advancement. Klas research formed a collaborative of over 31 organizations that are dedicated to giving great feedback and data about end users. The formation of THE EMR Improvement Collaborative can help measure the success of data interoperability. Current satisfaction measures are helpful, but might not give health IT experts and CMIOs and CIOs the data they need to formulate an interoperability strategy.

The gaps in transitions of care is a significant oversight in the existing interoperability marketplace. Post acute organizations have a huge need for better data sharing and interorganizational trust is a factor. Government mandates about data blocking and regulating sharing has a huge impact on data coordination. Don Rucker, MD, John Fleming, MD, Genevieve Morris and Steve Posnack participated in a listening session about interoperability.  Some EMR vendors mentioned this listening session and ability to have a face to face meeting were the most valuable part of the Summit.

Conversations and meetings about interoperability help bridge the gaps in progress. Convening the key conversations between stakeholders helps healthcare interoperability move faster. There is still work to be done and many opportunities for innovation and improvement. Slow progress is still progress. Sharing data from these efforts by the KLAS research team shows a dedication to driving interoperability advancement. We will need better business communication between stakeholders and better data sharing to meet the needs of an increasingly complex and data rich world.

What do you think the next steps are in interoperability?

KLAS Keystone Summit and Enterprise Imaging

Posted on July 21, 2017 I Written By

Healthcare as a Human Right. Physician Suicide Loss Survivor. Janae writes about Artificial Intelligence, Virtual Reality, Data Analytics, Engagement and Investing in Healthcare. twitter: @coherencemed


Recently, KLAS Research hosted their annual invite only Keystone Summit surrounding Enterprise Medical Imaging solutions.. The goal? To improve the success with which enterprise imaging solutions are deployed and adopted. A group of 24 executives from healthcare provider organizations and 10 enterprise imaging vendors met for the exclusive work day at Snowbird, Utah. In the sea of noise about healthcare technology Utah has been quietly innovating and improving outcomes. I was honored to be able to attend and see the results of their hard work.

Healthcare innovation needs voices that move out of the echo chamber and collaborate. We need more makers and quality information across measurement. Consistent messaging between large healthcare organizations as well as between vendors and providers improves outcomes for enterprise imaging.  

Adam Gale of KLAS shared his personal experiences leading youth in a pioneer trek during his remarks to the group and likened it to leading this market. Prior to the conference, Adam went as a leader for youth to travel some of the trails that early settlers of Utah followed. These settlers are called “The Pioneers” and the experience of a short pilgrimage can help today’s over connected and digital youth understand to a small degree, what past generations experienced in walking through Wyoming.

Adam Gale told of his experience:  “I spent several unique days last week on the plains of Wyoming with about 400 young people. The goal was to instill in them an appreciation for the legacy that comes from these early pioneers. You can imagine the enthusiasm of these youth switching from video games to handcarts. We had a lot of fun, but there were also some reverent moments when we walked by the gravesites of those that died on the trail. It was a touching moment for these young individuals to see the sacrifices of those who had come before them, and for them to take inspiration from the dead to move forward in life”

This personalized vision of in the midst of sensationalized health stories about predicting death and shiny technology, we are charged with caring for people’s lives. There are solutions that save lives, and for many patients access to images across providers allows them to get critical medical care.

Adam Gale went on to mention Mark Twain’s quote:

“Do the right thing. It will gratify some and astonish the rest.”

Leaders from the KLAS summit met together to outline what that “right thing” looks like and create a way to measure if Enterprise imaging was on track, and how to get on track. Current and expected functionality was outlined for five areas, including: Capture, Storage, Viewing, Interoperability and Analytics. They also outlined common delivery and implementation failures and Executive Recommendations.

Enterprise Imaging is a vital part of healthcare delivery and care and often doesn’t translate well between hospital systems or between providers. Don Woodstock, VP and GM of enterprise imaging for GE Healthcare, spoke about this vision of patient centered care and the collaborative effort:

“Images are an absolutely vital component of patient-centered care.  Providing every physician and caregiver that full comprehensive view of the patient to feed into their diagnostic and treatment decisions is so important but to date has been challenged.  This collective effort with KLAS, leading providers, and the major imaging vendors is leading the way for us to realize this vision.”

One of the complexities surrounding enterprise imaging is that each healthcare system is personalized. Richard Wiggins MD, is the Director of Imaging Informatics for the University of Utah Health Science Center and directs the Society for Imaging Informatics in Medicine. I spoke with him about some of the important aspects of Imaging Informatics as a field and developing a structure for enterprise imaging. Diversity of workflow in each health care system makes a one sized fits all enterprise imaging strategy untenable. He spoke about his experience working with the University of Utah:

“The University of Utah started incorporating visible light images for Enterprise imaging (EI) into our PACS in 2012. We believe that the PACS should be the repository for all digital imaging, not the EMR. Initially there was the usual issue of changing the mindset from individual silos of data to an enterprise imaging strategy for UUHSC.  Usually institutional imaging strategies are focused on being an individual service line, the changes in governance take time and energy.

Radiology already has an established workflow for digital imaging, with the order, RIS interface (or EMR if integrated) which drives a modality worklist to allow the tech to identify the patient, then the image is created on the modality, and then the image is sent to PACS in an organized fashion with metadata that is searchable. An order is needed for this system because it provides a clear entry point and assignment of a unique ID with some contextual information, but there are other imaging workflows that require an encounter workflow running in parallel to the traditional radiology order workflow. We need this workflow to allow for mobile devices, since they are ubiquitous not only for the medical professional, but also for the patient, with authentication, security, and the ability to have an app iOS and Android that will allow for multiple high resolution images and video to be acquired in a fashion that they can easily be incorporated into PACS, possibly through the EMR, while the images or video is not stored permanently on the device.”

This collaborative patient centered event reviewed some of the challenges and successes which each stakeholder had with enterprise imaging. They also made official recommendations for leadership. These recommendations for provider leadership are a must read for healthcare executives responsible for understanding. The recommendations from the KLAS whitepaper are:

  • Providers often fail to prepare enough for the deep commitment of an enterprise imaging journey. This preparation includes the investment of resources, personnel, and understanding. Organizations need to understand, prepare and commit that these deployments often take years.
  • Providers often ask vendors for quotes without knowing what they want to accomplish as an organization. Providers need to do more work upfront and have alignment on the scope and goals. When the provider customers do not know what they want to accomplish, vendors are put into a box. How can a vendor provide a solution to customers who do not know what they want to solve?
  • The views of clinical users must be included in an enterprise imaging strategy. The number of image users/viewers dwarfs the number of image producers, and if the systems are built only by the producers, we will miss the mark.
  • The C-suite really needs to lead out with enterprise imaging, but today, enterprise imaging is regulated to a position of limited resources and alignment. That hurts the likelihood of success. The message of value to the c-suite is lacking today, and that is a challenge. Vendors and providers need to work together to educate c-suite leaders.
  • Governance is difficult to set up because it takes a group of people who are willing to govern as well as a group of people who are willing to be governed. Leaders from many departments need to be drawn into this conversation. If a provider organization does not have multiple departments and specialties involved in the governance, they don’t have a true governance model, and the governance will die on the vine.

 

Without a strong leadership structure and clearly delineated roles, providers and hospital systems will resist even helpful change. Change has to be provider driven, not IT driven. The dedication of top leaders must be paired with end user buy in from physicians. The KLAS Keystone Summit had four provider leaders that collaborated before and during the June Meeting to developme tools for measuring progress. One of the most important aspects of a hospital system improving enterprise imaging is clear standards for workflow.

Richard Wiggins, MD of the University of Utah spoke about the value of working together and creating as a group with diverse experiences:

“The ability to have input from the executives,  providers, and vendors, and thought leaders all combined allows for a powerful forum.  The integration of short talks with table discussions and then cross table pollination of ideas and the systematic placement of providers, vendors and thought leaders all intermixed at the tables led to some good discussions. Frequently there are systems, like PACS that have features that were likely very exciting and interesting to the CS and EE people who put it together, but have no actual use in the imaging clinical workflow. In addition, we have found that each site has its own idiosyncratic workflow and productivity issues, so one PACS may work great in one shop, but not in another, and this becomes more complicated with the integration PACS/SR/RIS.  A combination of the systems at one shop may work great, and the same combination may not work well at another site.”

The measurement vehicle for enterprise imaging adoption, progress and success was defined by a group of four provider leaders:

  • Rasu B. Shrestha, MD, MBA: Chief Innovation Officer, UPMC
  • Alexander J. Towbin, MD: Associate Chief, Clinical Operations and Radiology Informatics, Cincinnati Children’s Hospital Medical Center.
  • Paul G. Nagy, Ph.D: Associate Professor of Radiology, John Hopkins University.
  • Christopher J. Roth, MD: Assistant Professor of Radiology, Vice Chair Information Technology and Clinical Informatics, Director of Imaging Informatics Strategy, Duke Health.

These measures are to be administered to organizations who have in place a multi-speciality governance and one of the following:

  1. Capture including DICOM and at least one of the following: visible light images, audio, or waveforms.
  2. Storage of images in a single enterprise archive or in a federated by connected set of archives.
  3. Viewing of images through a universal viewer integrated into the EMR.

This measurement tool will be available through KLAS research and can be used for industry wide information and ongoing system management. Alexander Towbin MD shared his experiences in creating the measurement vehicle and meeting with colleagues at the Keystone Summit:

“I was impressed that so many thought leaders in imaging IT – both on the provider side and the vendor side- were able to come together to discuss enterprise imaging.  There was palpable excitement in the room that we were working on the next BIG thing in healthcare IT and that our work would allow providers of all types to better care for their patients.”

Better patient care is always the center of Keystone Summit meetings. Creating standards for deployment and adoption of imaging will benefit doctors in providing patient care and improve collaboration within and between healthcare organizations, enabling better care for each individual. Standards development by a group of experts in the field will help improve vendor and provider clarity.

Many of the participants worked for competitors or had worked together at different points in their careers. Don Woodlock shared some of his experiences with the collaboration between key stakeholders involved in Enterprise Imaging.

“I personally loved the discussion, love taking the lead from our luminary providers, and working together across vendors to come up with the ideal workflow, user experience, and image availability solutions.  From a vendor perspective this was much more of a community trying to make patient care better than a group of competitors doing their own things.  In my case this may have been helped by personally having 4 people that worked for me over the years now at 4 different vendors at the meeting with me – friendships, a common vision, and serving the patient and the physician always trump competition.  We’ll all get our chance to innovate and create our own unique variants to this common vision down the road.”

Collaborating across interest groups and with provider entities and vendors is one of the best ways to ensure that products meet provider needs and expectations. This work will allow providers to give better care and improve future enterprise imaging product creation. KLAS research facilitated the meeting of leaders to reflect on the current state of enterprise imaging and plan for the future. Moving the needle from hype and hyperbole to hope for better patient care. KLAS Research is quietly facilitating nationwide leadership from the mountains of Utah. The pioneers of healthcare will take inspiration from current experts and lead the next generation of people dedicated to do what is right.