CT Center for Patient Safety Newsletter

February 2015

In This Issue

Patient Engagement using the Patient Passport

February Health Hint

Big Pharma Plays Hide-the-Ball With Data

Treating Agitation in Seniors without using Antipsychotics

Patient Engagement using the Patient Passport

How can you become more engaged and activated in your healthcare? You might wonder what you need to think about and how you can share what really matters to you with your care provider. Or perhaps you are not sure what information you should bring with you when you go to the hospital, your doctor's office or into a short-term or long-term care facility.

A multi-stakeholder committee, including patients, was convened by the National Quality Forum to discuss just that and to develop a tool to facilitate communication between caregivers and patients and their families. This tool has become known as the "Patient Passport." Rather like a passport in its hard copy appearance, it contains important information to facilitate your "travels" within our healthcare system. By including medical information such as your current medication list in its front pocket and your medical conditions and allergies just inside the front cover to your "I" statements about your care preferences such as, "To know me or to care for me means that you have to know that...", this tool encourages bidirectional communication with those caring for you. It gives providers a framework through which they can get to know you as a person and not just a patient or a medical condition. It further opens the door for you to more easily become an equal member of your care team and not just the recipient of medical care. Susan Frampton, the president of Planetree and Pat Mastors, a patient advocate and co-founder of the Patient Voice Institute were co-chairs of the NQF committee. Susan Frampton then brought the Passport to pilot at Griffin Hospital, a Planetree hospital in Derby, CT.

In addition to the hard copy version of the Patient Passport, there is a free online version of this tool, as well as an app that can be downloaded at the Doctella.com website. At this website, in addition to the free online Patient Passport, you will find tools to help you navigate your hospital stay, help you decide what questions you might want to ask your healthcare provider, as well as strategies to support your being an informed and empowered patient.

In the interest of full disclosure, we want to share that Alan Manning, a member of the Board of Directors at the Connecticut Center for Patient Safety is the COO at Planetree.

February Health Hint:

If this winter is finally getting to you and you are planning a trip to escape it all, consider a few travel tips for before you leave to help you stay healthy while you are away:

Ask your doctor if there are any special precautions you should take if you have any medical issues.
Make sure your vaccinations are up to date
Check to see if you need any special medication for where you are going
Make sure you will be covered by your health insurance wherever you are going. In addition, make sure you bring your ID card.
Check the Centers for Disease Control and Prevention's (CDC) travel site for the latest information on travel as well as alerts for certain regions of the world.

For a more detailed listing, go to the APIC website.

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Dear Members,

As we begin our new year, there is so much happening at the Connecticut Center for Patient Safety. Jean Rexford, the founder of our organization has retired and is now our Senior Advisor. In my new role as Executive Director, I see many exciting challenges ahead of us.

We will continue to work toward greater transparency of cost and quality. Patients, in surveys and anecdotally have said that transparency on cost and quality are priorities. We will provide you with updates of what is happening legislatively here and in Washington.

We also believe that education of our health care providers is needed to expose them to the cost of health care harm and the importance of patient safety in the more global sense of both concepts. We know that the dollar cost of medical error and harm is staggering, but the cost in terms of human lives lost, currently estimated at between 220,000 and 400,000 per year and the third leading cause of death in our country is unacceptable. We continue to bring our stories, the patient narratives, into nursing classrooms and to medical and other health science students. We find that they leave with a higher commitment to change their personal practice and also to change the culture of medicine wherever they are heading.

Consumer education is needed as confirmed by our research,
Removing Barriers: Creating Health Care Access for Connecticut's Newly Insured. We are committed to working on initiatives that will extend these programs to more of our residents at senior centers and other community based locations. Unfortunately, too many of our members have found us after they have experienced a medical error and our objective continues to be to raise awareness and to inform the public of what they can do to become more engaged patients and thereby lessen the likelihood of being harmed in a healthcare setting.

We have an active Facebook page which we would love you to "LIKE" and where we encourage your comments. We add information to our website regularly, so it too is a place that you should visit from time to time.

I am truly excited to be working on all of these and other initiatives at CTCPS and look forward to hearing from you, our members and our supporters, with any ideas and/or concerns that you might want to share.

Lisa Freeman

Big Pharma Plays Hide-the-Ball With Data

Not too long ago, in a Newsweek article, Big Pharma Plays Hide-the-Ball With Data, we read about the manner in which drug manufacturers routinely hide drug trial data that do not reflect well on their products. The reason that I am including an article about this now is that even though, according to the Newsweek article, the problem is well recognized throughout the pharma research community, the Cochrane Collaboration has highlighted Tamiflu as a current day example of the failings of this system. And one thing that we all know is that we are in the midst of Flu season.

They found that there were many drug trials, but the only ones that became available to the public were the ones that showed good outcomes. What was not shared were the stories of "at least 70 people [who] have died, many of them by suicide, after Tamiflu-induced episodes." It turns out that "you are far more likely to die from the flu than you are to have a dangerous reaction to [Tamiflu]," but the article also points out that the Cochrane Collaboration has found that the only thing that the drug's trials proved that Tamiflu definitely does do is to shorten the duration of symptoms - by about a day. It is up to you to decide if the benefit is worth the risk.

Did you know that not all drug trial results are published? Shouldn't patients have the right to have this information available to them so that they can make informed decisions about their care based on the complete picture and all of the information that is known about a particular medication? We think so!

Treating Agitation in Seniors without using Antipsychotics

For those of you who have aging family members or who yourselves are aging and starting to think about "senior" issues, one of the concerns that is shared by many focuses on the overuse of antipsychotic medications in our aged population. In September 2014, the Center for Medicare and Medicaid (CMS)

announced that it met its initial goal of reducing the national prevalence of antipsychotic use in long-stay nursing home residents by 15.1 percent. This goal was originally set to be reached by the end of 2012. Currently, CMS has set a new goal of a 25 percent reduction by the end of 2015, and a 30 percent reduction by the end of 2016, compared to the baseline 2011 rate. At the time of this announcement, Connecticut's rate of antipsychotic use in this report had dropped by 21.6% but our residents are still more likely to be given antipsychotics than their counterparts in 33 other states.

Can it be done? Can we really find other ways to deal with the agitation that is often seen in our seniors with Alzheimer's or other forms of dementia? Apparently. A memory care facility and nursing home in Minnesota says a resounding "YES!" When exploring the question of whether it could be done, folks at Pathstone, which is one such facility in Minnesota, set out on a mission. Within six months, all of their residents were off any antipsychotics and wonderful things started happening. The short story is that they looked at the challenging behaviors of the residents and rather than medicating them, they would try to find the cause of the behavior and address that. This individualized approach to changing these behaviors led to the establishment of a program, "Awakenings" in which they found that residents "started interacting and people who hadn't been speaking were speaking. They came alive and awakened," according to Shelley Matthes, an RN and the head of quality assurance. For more about this program, read the full article This Nursing Home Calms Troubling Behavior Without Risky Drugs.

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