Monday, April 14, 2014

Patient Engagement or Provider Engagement?

"We need to promote improved patient and family engagement in their care."

Listening to a lecture today, I'm struck by this statement, as my morning was once again challenged by the reality of a family member who is oh so engaged, but whose healthcare providers are not adequately meeting his needs. With advanced complex multifactorial chronic illness, he is experiencing ongoing symptoms and worsening limitations, and yet is reluctant to contact his specialist yet again. More challenging yet, he has multiple specialists- his heart problems the domain of cardiology, the lung problems the responsibility of the pulmonologist and the pain management under the care of his primary care provider. Yet no one really sees him as a whole person, or has attempted to treat all problems together to improve his quality of life. No one is really following him, or is proactively engaged in his care. 

This is just one representative of the growing population of individuals living for years, even decades with complex chronic illnesses. They have survived the cancer and the codes. They are living with multiple organ failure. Yet how are they living? Often it is challenging.

How can we change this situation?
How can we promote enhanced provider engagement in patient and family-centered whole-person care? 

I believe that nurses hold the answer. We have the knowledge, skills and attitudes necessary to promote holistic chronic illness management for individuals and families. We have the numbers to ensure that all individuals living with chronic illness have a nurse who is coordinating their care, advocating for them and navigating and communicating across this very complex healthcare system.  What I don't know, is how this will be paid for. These are important directions for role development and healthcare financing developments. 

I hope that soon we will be able to say that we have both engaged patients and engaged providers, as engagement is needed in both directions. 

Monday, April 7, 2014

ICD Study: Documentation Challenges and Recommendations

Nurses Experiences Caring for Patients with Implantable Cardioverter Defibrillators (ICDs)- Research Study Description

I've recently had a chance to work on a collaborative research project with Therese Gedemer, a UW-Madison undergraduate nursing student and Paula Woywod, a clinical nursing faculty  member with critical care experience. This has been an exciting project, and already our first findings from this research are being shared.  Therese will be presenting a poster on campus this Thursday, describing documentation challenges that our nurse participants identified that impacts them in  caring for their patients. You can find this poster here: ICD Study: Documentation Challenges and Recommendations

Here's more information about our study:

Over a 28 day period in Feb and March 2014 we collected data from 66 nurses who have experience caring for patients with implantable cardioverter defibrillators. We used our professional and personal networks and a Facebook site to spread the word about our study, and many nurses helped spread the word, so we were able to exceed our goal of 50 participants. The UW-Madison Health Sciences IRB granted an exemption for this study in Feb 2014, prior to the study procedures.

We collected both quantitative and qualitative data using an online survey that we developed from the  findings of a focus group research study  we conducted at the American Association of Heart Failure Nurses annual meeting in Seattle in 2011.  The questions in the survey focused on  nurses experiences
 and recommendations  related to communication, documentation and policy issues in caring for patients with ICDs.

We've now assembled a larger team of nurse clinicians, researchers and students to analyze the data we've collected. Within this collaborative research group, we have a number of smaller groups each f ocusing on specific issues that have been identified in the data that they find most interesting or important. Each group has been tasked to describe the issue in detail as well as recommendations and tools for practice and policy, using the study data as well as review of the literature and practice.  As our results are finalized, we will continue sharing them on this site, through this blog,  the ICD Sudy Facebook page, and through the AAHFN Supportive and Palliative Care Facebook site.

If you are interested in getting in touch or getting involved in this project, please email me at