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Big Data in Health Care: Speaking with Nursing Leader Dr. Bonnie Westra

As part of our ongoing series on big data in health care, we spoke with Bonnie Westra, Ph.D., RN, FAAN, FACMI, Associate Professor and Director, Center for Nursing Informatics, at the University of Minnesota School of Nursing. Dr. Westra is also a member of the Institute for Health Informatics and works to improve the exchange and use of electronic health data. Here, she discusses the importance of including nursing data in big data science.

Dr. Bonnie Westra

Dr. Bonnie Westra

Real World Health Care: Why is the University of Minnesota’s School of Nursing spearheading a national action plan to include nursing data in big data science? What are your goals?

Bonnie Westra: Here at the Center for Nursing Informatics, our goal is to lead the discovery, application, and cutting edge thinking for nursing and health informatics scholarship to improve the health of individuals and communities. Nurses and the field of nursing make major contributions to health care. However, as a profession, we need to do a better job of making nursing data more useful for research purposes. We have a good foundation for how to think about nursing data, but we need to move from idea to action and develop standards for capturing, documenting and integrating nursing data with other health care information systems.

Through the Nursing Knowledge Big Data Science initiative, we seek opportunities to standardize and integrate the information nurses gather in electronic health records (EHRs) and other health information technologies. This data is the source of insights and evidence used to prevent, diagnose, treat and evaluate health conditions. The addition of rich contextual data about patients and nursing care will help us develop actionable predictive models that can increase the confidence of nursing leaders’ decisions to improve patient outcomes and safety and control costs.

The key element is having nurses involved in health information policy so that nursing data is included in clinical data warehouses for analytics and research.

RWHC: How do you differentiate between the concepts of “big data” and “big data science?”

BW: When thinking about big data, most people consider the volume, or amount of data. But you also need to think about its velocity, or the rate at which data accumulates. Variety is another hallmark of big data. In health care, that can include structured or semi-structured nursing documentation, data from monitoring devices and imaging studies, scheduling and human resource data, and patient-generated data. You also need to consider the veracity, or certainty of the data, in terms of how appropriate it is for either its original purpose — perhaps at the point of use — or for a secondary use in research and analytics.

Big data science has been defined by the National Consortium for Data Science as the systematic study of the organization and use of digital data to accelerate discovery, improve critical decision-making processes and enable a data-driven economy. It encompasses the principled acquisition, curation, exploration, manipulation and interpretation of big data sets.

RWHC: Why is it so important for nursing leaders to understand the value of big data science?

BW: The ability of nurses to make optimal clinical decisions depends on having access to accurate, real-time information, regardless of the care setting. Not only does big data have the potential for improving enterprise operating and financial performance by providing greater visibility to operational issues that support or detract from cost-effective value-based care and services. It also has the potential to improve nursing practice and patient outcomes. It can support improved decision making by offering a comprehensive and synthesized understanding of patients, nurses and organizations. The results of big data analysis enhance confidence in conclusions and can be fed back into systems as clinical or managerial decision support. Plus, it can produce a more robust, timely and valid research agenda.

Unfortunately, many nursing leaders don’t come out of school with a background in information science and informatics. They are then put in a spot where they don’t necessarily understand how to make sure data is usable.

RWHC: How can big data science help to improve positive patient outcomes?

BW: Big data science can help practitioners comply with evidence-based practice and tailoring treatment to subgroups based on patients’ unique characteristics. It also gives us the ability to understand how system characteristics such as staffing models can impact patient outcomes.

As an example, I’m currently working on a study in which we’re using EHR data to understand how compliance with the Surviving Sepsis Campaign (SSC) recommendations affects mortality and complications such as kidney or cardiovascular problems. The challenge here is to make sure data is collected and organized in a consistent way so that eventually, we can determine which SSC recommendations work best for which patients.

RWHC: What are some of the main challenges nursing leaders face in terms of accessing and utilizing big data to improve positive patient outcomes?

BW: One of the biggest issues is the lack of nurse informaticians and researchers who know how to create and harness the use of the data. Couple that with competition from other health care priorities such as meaningful use, and the fact that health systems don’t receive direct reimbursement for nursing care, and you can see how nursing-related big data becomes a lower priority. We need the health care industry to look beyond financial reimbursement to the overall value of nursing in terms of preventing adverse events and readmissions and improving patient satisfaction.

Nurses are the largest group of health care providers, and it’s critical for nurse leaders to have data to demonstrate the impact of their decisions, the value of their practice and how data can facilitate decision-making. We need to prepare nurses for the future with educational programs in informatics and involve nurses in the development of health care informatics technology.

RWHC: What type of support do you think is needed for your efforts from industry?

BW: First and foremost, software vendors in this space need to start collaborating on how to standardize data across disparate systems. A common core is needed. We’ll be exploring the topic of standardizing data and processes at the upcoming Big Data Science Conference, June 1-3 in Minneapolis. I invite all Real World Health Care audience members to attend and learn how they can contribute to the future of a national big data science initiative.

New Series: Big Data in Health Care

Welcome to 2016! The staff and sponsors of Real World Health Care wish you all a Happy & Healthy New Year. We look forward to another year of sharing ideas and insights from researchers on the forefront of real-world medical breakthroughs.

Next week, we’ll be kicking off a new blog series on implications of the use of big data in health care. From predicting disease and identifying targeted therapies and cures to improving our overall quality of life, big data is transforming the way health care decisions are made and care is delivered.

Over the next couple months, our guest bloggers will address issues including:

  • The use of analytics to identify and manage high-risk and high-cost patients.
  • How to extract clinical value from biomedical big data.
  • The use of big data to understand the human condition.
  • The role of large prospective randomized trials in the era of big data.
  • Distinctions between research and operational data within a “continuously learning” health system.
  • Implications of big data science for nurse leaders.

We look forward to sharing these expert views with all of you and hope that Real World Health Care continues to be a source of useful information throughout 2016.

Health Care Innovation is a Game That Everyone Can Play

Why?  Because everyone has been a patient, experienced a pain point, identified an unmet need, or had an idea to improve the health care experience.  However, one of the really challenging parts of health care innovation is that, while there are a lot of respectable ideas out there, the vast majority of these ideas get lost in the gap between idea and tangible venture.

BIO International Convention, Idea Design Studio

BIO International Convention, Idea Design Studio

At MIT Hacking Medicine, we often refer to this gap as the “valley of death”, because it’s where good ideas go to die.  To that end, our organization is dedicated to assisting aspiring innovators and entrepreneurs in bridging this gap.

MIT has a long and storied history of “hacking,” so it should come as no surprise that our signature event is in the form of a “Healthcare Hackathon.”  These events help to break down the siloes in health care by encouraging unlikely players to work together.  Instead of thinking independently, attendees from multiple disciplines spend the weekend designing solutions to real world medical challenges.  Our unorthodox approach to health care innovation has helped over a dozen teams turn their weekend “hack” into viable startups, backed by over 70 million in investment capital.  The model is now being used across the globe to accelerate health care opportunities into reality.

The MIT Hacking Medicine team was on site at the 2015 Biotechnology Industry Organization (BIO) International Convention to run the Idea Design Studio.  Unlike our typical events that last 48 hours, participants at the BIO Convention were asked to roll up their sleeves and tackle pressing health care challenges in less than 4 hours.

The call to action was amazing – in less than 4 hours participants broke into 8 teams within the themes of personalized medicine, clinical trials, and patient engagement.  Next, these researchers, clinicians, business executives, designers, educators and students discussed challenges and problems within these three themes.   They spent the remainder of the time developing a solution.  Before wrapping up the workshop, teams were given three minutes to pitch their innovative solutions to the audience.  Some of these solutions included reducing the clinical trial dropout rate through gamification, providing easy access to genetic information for patients and providers, and my personal favorite, educational and support tools for the family care providers of Alzheimer’s patients throughout the progression of the disease.

The Idea Design Studio aimed to bring together some of the brightest minds in biotechnology with a shared passion for transforming health care.  In only four short hours, participants demonstrated an incredible amount of ingenuity while crafting solutions to opportunities within the space of personalized medicine, clinical trials, and patient engagement.  New partnerships were formed and continued collaborations are in the works. We truly appreciate the energy and dedication on display by the participants and are extremely grateful to BIO for giving us the opportunity help raise the profile of healthcare innovation and entrepreneurship.

The Idea Design Studio is a wonderful example of applying out-of-the-box thinking to solving today’s healthcare problems. Have you encountered other examples? Let us know in the comments section.

The Current Perspectives of Palliative Care

Last Monday, Dr. Linda Sutton gave a speech on palliative care at the National Comprehensive Cancer Network Summit on Patient Advocacy.  A subset of healthcare commonly misunderstood, palliative care is no longer just end-of-life care.

What is palliative care? How is it different from hospice?

 Dr. Sutton: There are many definitions of palliative care –CMS’ [Center for Medicare and Medicaid Services] is based on how palliative care is paid for; while the World Health Organization’s, is broad and inclusive but complicated and characterized by what palliative care is not.  The definitions that have made the most sense to me and my patients are those definitions that emphasize what palliative care does – alleviate the multi-dimensional suffering of patients with serious and chronic illnesses.Palliative Care Diagram

One way to help explain the difference between palliative care and hospice is to use a diagram:

All care provided by hospice is palliative care, but only a small proportion of all the palliative care provided is hospice care.  Hospice is largely defined by the CMS criteria for eligibility; most notably that patients have a life expectancy of 6 months or less if the disease runs its usual course.  That has largely limited the applicability of hospice. Palliative care is not constrained by how insurance companies or Medicare define the care.


Why does this misconception exist with palliative care? 

Early on, as palliative care emerged as a medical specialty in its own right, the effort was to distinguish palliative care from other disciplines and approaches.  Palliative care advocates spent a lot of time and energy emphasizing what palliative care was not; rather than focusing on what it was.  Some of this was driven by the negative connotation of ‘hospice.’  The unfortunate reality is that hospice care is inextricably linked to dying.  Hospice provides terrific palliative care that focuses on the patient and the family as the unit of care, but does so explicitly for those who are dying.  Palliative care advocates wanted to offer that care to others, who might not be dying, but still faced high levels of stress – both physiologic and psychosocial due to serious medical illness(es).


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How do you think we can change the perception of palliative care? 

I think the only ways to change perceptions are through education and experience.  Clearly more education of both our clinical providers and the public in general is required.  But, what will be more important, in the final analysis, is what experiences do patients and their families have with palliative care?  If good patient experiences are shared, more people will know about and seek help from palliative care specialists.  However, it will be a challenge to significantly increase patient experience over the next few years, given the shortage of clinicians skilled in palliative care.


Do most doctors know the benefits? Or do you need to see a specialist?

I am not convinced that most physicians yet see how palliative care specialists can help their patients.  In many locations or places of practice, there is not a palliative care specialist immediately available – the closest specialist may be hundreds of miles away.  That is important because a large proportion of the populace in need of palliative care really cannot travel to see a specialist due to the burden of their disease or illness.  One consequence of this is that, if physicians cannot see the benefits of palliative care first-hand, it is difficult to understand how their own patients might be helped.  Furthermore, much of the palliative care services that are offered are inpatient services and not available for outpatients.  With fewer doctors going to the hospital on a regular basis to see patients, they again miss the opportunity to see the benefit of palliative care services.

We may need to develop more creative ways of delivering palliative care – perhaps using telemedicine or other technologies.


Do all patients who need palliative care require a ‘palliative care specialist’?

This is complicated, because no two patient situations are alike.  But, I don’t think ALL patients with serious illness need palliative care but they should have access to clinical providers with training in palliative care – that might be a social worker, or nurse specifically trained to address the palliative needs of patients.  A good clinician working with others trained in palliative care –even if the clinician is not ‘board certified’ in palliative care, can alleviate significant amounts of patients’ distress.


If you think that you or someone you love needs palliative care, what is the first step toward getting it?

 Always, start with your physician.  Contact your local hospital, if there are palliative care specialists in your community, they are likely on staff at your local hospital.  Your local hospice might also have a palliative care specialist on staff as well or can help with locating those resources.


Did you know that palliative care wasn’t just end-of-life care? Would you consider it for yourself or a loved one, or is this misconception still too strong? Tell us about your views on palliative care, and if it changed, in the comments section!

Patient of the Month: Alex Defio Shares His Story for Men’s Health/Cancer Awareness Month

Alex Defio did not feel sick on the day he was told he was going to die.

A construction worker and amateur poker player, he considered himself a generally healthy individual. On this day, however, Alex was being dealt a hand that no one should ever have to play; he was diagnosed with stage IV stomach and liver cancer. It was terminal.

Alex Defio

Alex Defio

Alex remembers the doctor advising him – coldly – to return home and seek hospice care for the remaining months he had to live. “It knocked me out. I couldn’t believe anyone was talking to me that way,” Alex recalled. “When you know you’re going to die, when someone tells you the time of death, that is very scary.”

Like many cancer patients, Alex felt fine until he began chemotherapy. Bed-ridden for months, he could no longer work. Although he had been receiving financial assistance from his home state of Arizona, the budget for his program was soon cut.

Alex was able to access social security, but it did not cover everything. He watched his money run out knowing that he would be unable to cover his medical expenses. He tried turning to non-profits and charities, but to no avail. “I’d spent most of my life donating to various [charities] and organizations, but when I went looking for help, everyone told me that I had such a rare cancer that nobody collects money for it,” Alex said. “Every place I went – and I went everywhere – could not give me any help.”

After two years struggling to put what little money he had toward his medical expenses, Alex sought help from his oncologist, Dr. Rakkar.

Dr. Rakkar introduced him to the HealthWell Foundation, a nationwide non-profit providing financial assistance to insured patients who still struggle to afford the medications they need (and sponsor of this blog). Through HealthWell, Alex was finally able to get the help he needed.

Since then, Alex has continued his treatment, which is restricted to chemotherapy. He knows he has not been cured and that surgery is not an option, but he has lived past his original prognosis and is grateful for every day he has.

Alex has continued to give to others and has donated to HealthWell. “I know that after I’m gone, there are still people who are going to need you,” Alex said. “The people that you help – and I’m speaking for people I don’t even know – if they’re cancer patients like me, you’re saving their lives.”

“I try to give back what little I have and hope it helps,” Alex added. “I will never be able to give enough for the help that HealthWell has given me. I am just so thankful you are there for us.”

And we are thankful for you too, Alex. During this Men’s Health/Cancer Awareness Month, we are honored to share Alex’s story and generosity.

How has cancer touched your life? Share your story in the comments section. For more information about seeking assistance from HealthWell, visit