CT Center for Patient Safety
CT Center for Patient Safety Newsletter

September 2017
Dear Members,

The monthly newsletter is back after a break for the summer months.  We hope that everyone enjoyed a healthy, enjoyable summer and that you are looking forward to a pleasant fall. 

Here at the Center, we have been busy working in several areas and on a number of projects.  A highlight of my summer was being on the faculty of Telluride - the Academy of Emerging Leaders in Patient Safety.  This program offers medical students, interns, residents and nursing students an intensive week program exploring patient safety, causes of medical errors and what can be done to avoid them, the impact of patient harm on health care, transparency and just culture, and interprofessional communication.  It is encouraging to see the future providers of healthcare engaging in a program such as this and leaving with ideas and commitments of how they will apply what they learned in practice.

During the last few months, we continued our role representing patient perspectives in many different areas of healthcare as one of the only non-conflicted patient advocacy organizations here and nationally. Our educational programs and our work with many policy making and support organizations continued.  Sadly, although we do a lot of work to prevent medical harm, we also regularly hear from individuals who have experienced harm and don't know where to turn next.  We provide support and guidance.

As we move into fall and the 2017 health insurance enrollment period opens, we are pleased to share that we are embarking on a pilot project through the UCONN Health Disparities Institute (HDI): Equal Coverage to Care Coalition Demonstration Project.  Along with other coalition members, we will be testing an approach to increase basic health insurance literacy and build health-system navigation skills among diverse community groups in CT.

Finally, I would like to share that we have an intern, Kelsey Bombon, working with us. She will be working with us on the HDI project as well as organizing our volunteers so that we are able to maximize your talents and preferences.  Volunteers have become a vital part of what we do and your numbers are growing.  We serve as a source for organizations seeking volunteer "patient" participants in various activities and we also invite volunteers to serve in various capacities within the CT Center for Patient Safety. We are very excited to be working with Kelsey!

As we approach the year end, there are many exciting things going on.  We invite you to follow us on Facebook (and a little bit on Twitter) to see what we are interested in.  You can also keep up with us on our website and you can certainly email me at Lisa.Freeman@CTCPS.org with your thoughts, concerns and questions.
Lisa Freeman
In This Issue
  Patient and Family Engaged Care in Connecticut
The current trend in health care is for care to be provided in a person-centered manner.  This type of care goes by a few "names":  patient-centered, patient and family engaged care,person- and family-centered care, patient directed care, patient priority care, amongst others.  Whatever term one uses to identify the concept, I favor the definition, "Patient and family engaged care (PFEC) is care planned, delivered, managed, and continuously improved in active partnership with patients and their families (or care partners as defined by the patient) to ensure integra¬≠tion of their health and health care goals, preferences, and values. It includes explicit and partnered determination of goals and care options,  and  it requires ongoing as sessment of the care match with patient goals."[i]  

The important piece of this is the recognition that all components of the care are done  with  the patients and their families, recognize and respect their goals an d preferences and is a continuous process.  I was pleased to co-author an article in the BMJ  HERE  which  speaks to this point.
When I read articles, hear interviews and talk to people around Connecticut, I often hear these various terms being used, but when I look deeper at the actual clinical environments, I am often disappointed.  One of my big concerns/observations has been that we are still in the midst of a transition that is moving slowly. For instance, years ago some hospitals created Patient and Family Advisory Councils. Then it became a requirement of the CMS so everyone created PFACs   and checked off the boxes.  But 
the PFACs were not, and in some cases, are not, necessarily doing anything meaningful.  Everyone says that they are providing it, but they are not - it's often just posters on the walls and other "window dressing".  I will say that as time is passing, there are more genuine efforts taking place and there are some centers where patient and family engaged care is truly the rule rather than the exception, but this is the exception.  The test is whether the care, at all levels, is being provided with the patient rather than just for the patients.

[i] Frampton, S. B., S. Guastello, L. Hoy, M. Naylor, S. Sheridan, and M. Johnston-Fleece. 2016. Harnessing Evidence and Experience to Change Culture: A Guid¬≠ing Framework for Patient and Family Engaged Care. Discussion Paper, National Academy of Medicine, Washington, DC.  https://nam.edu/wp-content/uploads/2017/01/Harnessing-Evidence-and-Experience-to-Change-Culture-A-Guiding-Framework-for-Patient-and-Family-Engaged-Care.pdf

An Invitation to Patient and Family Engaged Care for Consumers
In the above story, I discussed the recent publication of a Planetree and the National Academy of Medicine paper that gathered and discussed a framework for patient and family engaged care.  The National Academy of Medicine's (NAM's) Leadership Consortium for a Value & Science-Driven Health System convened a Scientific Advisory Panel (SAP) which included a number of well-known patient advocates.  In response to that publication, the British Medical Journal published an editorial suggesting that patient and family engaged care (PFEC) would benefit from more support of the patient in ways to engage.  Another publication was the result of this....
As one of the co-authors, I am excited to share that the BMJ has just  published, as a response  to a  British Medical Journal editorial ,  An Invitation to Patient and Family Engaged Care for Consumers: What it is, Why it Matters and How Patients and Families Can Engage .
This document was created following the publication of the Planetree and National Academy of Medicine (NAM) discussion paper summarizing the evidence for patient and family engaged care (PFEC). One of my and the CT Center for Patient Safety's focused efforts to improve patient safety is to support a culture where patient priorities care, patient and family engaged care, patient centered care is the norm and not the exception.  The original paper , Harnessing Evidence and Experience to Change Culture: A Guiding Framework for Patient and Family Engaged Care can also be downloaded.  It contains evidence supporting the benefits gained by all stakeholders when PFEC is the standard cultural north star.  I feel that this evidence and the supporting document advances this effort and ask and encourage you share this widely .
Some of the ways that patients can engage in their healthcare:
  • On your next visit to your healthcare provider, ask them if they have seen the framework for patient and family engaged care. If not, direct them here: https://nam.edu/wp-content/uploads/2017/01/Harnessing-Evidence-and-Experience-to-Change-Culture-A-Guiding-Framework-for-Patient-and-Family-Engaged-Care.pdf.
  • Ask your healthcare provider if there is a way for you to be involved in improving care. For example, ask if they have a patient-family advisory council.
  • Ask to be part of the organization's leadership or government team. Ask if patients are included as board members, for example.
  • Ask to be with your loved one at all times, if they want that. Question why there are restrictions to visiting patients. If having visitors is not beneficial to your healing process, enlist the support of your care team to set parameters for guests.
  • Ask that a Care Partner or family member be present and engaged for all conversations about your health.
  • Ask to be involved with your loved ones' care, at all times, based on what you, and they, are most comfortable with.
  • Invite a loved one to accompany you to appointments, procedures and consultations to provide support, but also an extra set of eyes and ears.
  • Ask about your provider's experience with your condition.
  • State your feelings. They matter just as much as your physical condition.
  • Get involved in research. Ask about how your condition is being studied and how you can help.
  • Let your care team know how you like to receive information.
  • Ask to see and contribute to your medical record. If you don't understand what you read in your medical record, ask questions until you do.
  • Tell your care provider what your health goals are - in your own terms (for instance, being able to walk up a flight of stairs, being able to play with your grandchildren without getting winded, etc.).
  • Come to doctor's appointments prepared. Bring a notepad with questions, your medication list and any other pertinent personal healthcare information.
  • Create a medical biography about yourself. What conditions and medications have you had in the past? What are you currently experiencing? What are your goals for the future?
  • Act like you belong. Be a teammate, not a subject. 
September is Sepsis Awareness Month

What is Sepsis?

Sepsis is the body's overwhelming and life-threatening response to infection which can lead to tissue damage, organ failure, and death. Sepsis is more than just an infection and the symptoms can come on very suddenly. Patients are diagnosed with sepsis when they develop a set of signs and symptoms related to sepsis. Sepsis is not diagnosed based on an infection itself. If you have more than one of the symptoms of sepsis, especially if there are signs of an infection ask your clinician "Could this be sepsis?"  Learn more about the symptoms of sepsis.  It kills 258,000 Americans each year.

You can  learn more  about SEPSIS at the Sepsis Alliance website.

Differentiating Dupuytren's Contracture from Rheumatoid Arthritis: A Patient's Guide
Guest authored by Cheryl Green PhD, DNP, RN, LCSW, CNL, MAC, FAPA

Dupuytren's contracture and rheumatoid arthritis are two distinct conditions affecting the hands. Both conditions can cause pain, effect joint function, swelling, and disfigurement. This article will explain the differences between the two conditions, empowering patients to advocate for the health and function of their hands.

Diseases of the Hand
Patients that experience diseases of the hand have pain, difficulty writing, washing themselves, working and completing all tasks associated with hand use and mobility. According to the Centers for Disease Control and Prevention (CDC, 2017), between the years 2013 to 2015, approximately 54.4 million adults within the United States had been informed by their healthcare provider, that they had lupus, fibromyalgia, rheumatoid arthritis, or gout. With increasing age, the risk of developing arthritis increases. For example, patients aged 18 to 44 years, 7.1% reported being diagnosed with arthritis, patients aged 45 to 64 years, 29.3% and 65 years and older, 49.6% reported being diagnosed with arthritis (Baker, Barbour, Hemlick, Zack, & Al snih, 2017).

Theis, Roblin, Hemlick, and Luo (2017) in examining work disability statistics amongst 20.1 million adults, noted that persons diagnosed with rheumatoid arthritis or other arthritic conditions in the United States, constitute 18.6%. Comparatively, back and neck problems constitute 30.3%, while anxiety/depression/emotional problems, 21.0%. Persons who were overweight (23%) and obese (31%), had complications associated with arthritis related to excess weight causing stress on the joints and limiting mobility over time (CDC, 2017).

Differentiating Dupuytren's Contracture from Rheumatoid Arthritis
Rheumatoid Arthritis  
Rheumatoid arthritis (RA) is a medical condition that causes affected persons to have decrease in joint function, tenderness, pain, swelling, and disfigurement of the hand. The condition effects both men and women. Early diagnosing of RA can be difficult because there presently is not a standard for diagnosis. Laboratory tests used during the diagnostic process for RA could include: rheumatoid factor, antibodies against citrullinated peptides test, C-reactive protein, and the erythrocyte sedimentation rate.  Joint erosion associated with RA, can be visualized by x-ray. Treatment, depending on the severity of RA can range from the use of disease-modifying antirheumatic drugs, nonsteroidal drugs, anti-inflammatory drugs, tumor necrosis factor inhibitors, and aspirin.

Dupuytren's Contracture
Dupuytren's contracture is a progressive and slowly developing hand deformity that occurs as knots of tissue (palmer fascia) form under the skin. Risk factors for Dupuytren's are being a male over the age of 50 years, northern European descent (occurs most often in men of Scandinavian or Celtic heritage), having diabetes, gout, arthritis, a family history of Dupuytren's, smoking, and alcoholism (Hinkle & Cheever, 2014; Mayo Clinic, 2017). According to DiBenedetti, Nguyen, Zografos, Ziemiecki, & Zhou (2011), " The prevalence of Dupuytren's disease defined as a self-reported physician diagnosis and/or surgical treatment was estimated as 1% (95% CI = 0.8-1.2), but the estimated prevalence is much higher (7.3%) when including self-reported symptoms of ropelike growth or hard bumps on the hand. The annual incidence proportion was estimated at about 3 cases per 10,000 adults" (p. 149).         
Patients effected by Dupuytren's contracture experience a thickening of the skin on the palm. As knotting and tissue thickening progress, typically over a period of years, the patient does not have pain, but the small knots forming under the skin can become sensitive to touch. The functional use of the hand is impacted as the pinky and ring finger start to pull inward toward the palm of the hand.

Healthcare providers currently diagnose Dupuytren's by examining patients' hands and obtaining a health history. For patients that are still able to perform their daily activities using their hands without difficulty, treatment is not needed. If treatment is indicated, the procedure of needling can be used to break a part the tissue cords under the skin of the palm. The enzyme, clostridium histolyticum (Xiaflex) can be injected into the cord to weaken and soften it. For patients with severe hand deformity, surgical removal of the tissue is an option.

Advocating for Yourself and Loved Ones
It is imperative that patients learn to advocate for themselves and their loved ones when interfacing with the health care system and healthcare providers. Learning to differentiate between rheumatoid arthritis and Dupuytren's contracture is an example of how patients can empower themselves with health care knowledge. Remember, you are in charge of your body's health and well-being. Be kind to yourself, you deserve it!
Baker, N.A., Barbour, K.E., Helmick, C.G., Zack, M.M. & Al snih, S. (2017). Arthritis and
       cognitive impairment in older adults. Rheumatology International. 37(6), 955-961. 
       doi: 10.1007/s00296-017-3698-1.
Benedetti, D.B., Nguyen, D., Zografos, L., Ziemiecki, R., & Zhou, X. (2011). Prevalence,
       incidence, and treatments of Dupuytren's disease in the United States: results from a
       population-based study. Hand, 6, 149-158. doi:10.1007/s11552-010-9306-4
Centers for Disease Control and Prevention. (2017). Arthritis-Related Statistics. Retrieved from
       July 1, 2017
Hinkle, J.L. & Cheever, K.H. (2014). Brunner & Suddarth's Textbook of Medical-Surgical
       Nursing (13th ed.). Philadelphia, PA: Wolters Kluwer Health| Lippincott Williams &
Mayo Clinic. (2017). Dupuytren's contracture. Retrieved from
Theis, K.A., Roblin, D., Helmick, C.G., Luo, R., Prevalence and causes of work disability among
      working-age US adults, 2011-2013, NHIS. (2017). Disability and Health Journal
Recommended Articles
There are many news articles, on a variety of topics, that I read each month - actually each day.  As a new monthly feature, I am including the links to some of the articles that peeked my interest.  If you would like to have this feature included in the future, let me know by emailing CTCPS at info@ctcps.org .


J&J ordered to pay $417 million in trial over talc cancer risks  By Nate Raymond

A year after calling advisory "false and misleading," 465k patients told to visit doctor to patch critical pacemaker vulnerability  By Dan Goodin

City of Waterbury sues multiple big name pharmaceutical companies  By Kaitlin Goslee,

Alexandra Wilson Pecci