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Patient Engagement Tip of the Month

Geri Lynn Baumblatt, MA, is the Executive Director of Patient Engagement at Emmi Solutions where she oversees the creation of multimedia patient engagement, education, shared decision-making, and behavior change Emmi programs and interactive phone calls. She hosts an annual October Health Literacy Month blog series for Engaging the Patient. She regularly speaks and serves on health literacy and shared decision making panels for organizations like AHRQ, the Institute for Healthcare Advancement, Health Literacy Missouri, and the Center for Plain Language. She also serves as an Editorial Board member for the Journal of Patient Experience. Emmi Solutions works with decision scientists, behavior change experts, patients, and clinicians; they draw on their research and experience to create content that helps patients engage in their care.

Posted: Saturday, November 28, 2015

Just the Drug Facts: Helping Patients Understand Medications

By Geri Lynn Baumblatt, MA, Executive Director of Patient Engagement, Emmi Solutions
Catalina Gorla
Co-author Catalina Gorla (featured left) is the COO and co-founder of Informulary, Inc., a Dartmouth College spin-out that creates tools like the DrugFactsBox to help people understand what drugs can and cannot do. catalina.gorla@informulary.com  | facebook.com/informulary 

Consumer Reports magazine and Informulary - a drug data company - recently ran a series of focus groups to find out how people think about prescription drugs. They learned 3 things.

First, people strongly believe they can find all the information they need online. Unfortunately, with online medication info, if the information is free, there’s a good chance it’s marketing masquerading as fact.

Second, people also look for answers on side effects in crowd-sourced data or anonymous patient reviews. But this source is also fraught with issues – who’s really doing the rankings and why? The answers from a self-selected group of people “liking” a medicine can be very misleading.

Mainly, they learned that despite confidence in online sources, people have lots of questions and few good answers. When a patient gets a new drug, they want to know:

•    Is it safe?
•    Can it help me?
•    Is this drug worth the cost?
•    If I can’t feel the benefit, why should I keep taking it?

We know that engaging patients in a shared decision making process around the decision to start a new medication can help them understand why they’re taking it and improve adherence. But it can still be challenging for clinicians and patients to get credible answers to these questions.

The best way to get prescription drug information is the FDA itself. Before it approves a drug, FDA medical and statistical experts review all the data and make it freely available. They see all the evidence, including studies where the drug didn't work. You can learn what these independent experts think about how drug benefits and side effects stack up and what open questions remain about benefits and side effects.

FDA documents are a goldmine of information. They can be found at  Drugs@FDA, and there’s a video explanation on how to use the site published in the BMJ. Unfortunately, it can be challenging to find what you’re looking for. The documents aren’t organized in a standard way and can often number in the 1,000s of pages.

A new resource, the DrugFactsBox library, summarizes the FDA information in a clinician and patient-friendly format. Developed based on years of research by Drs. Woloshin and Schwartz, professors at the Dartmouth Institute, the library is currently in beta at DrugFactsBox.co., so anyone (clinicians and patients) can freely access information on 5 medications.

Feedback on DrugFactsBox is welcomed via this form or you can contact Catalina directly at catalina.gorla@informulary.com.

Tags: patient engagement, shared decision making
Posted: Monday, October 26, 2015

Narrating Change: People Can’t Be Motivated by What They Don’t Know

By Geri Lynn Baumblatt, MA, Executive Director of Patient Engagement, Emmi Solutions
Burn gel relieves pain on contact. You can see a cut or scrape start to heal over the course of a week. And when a medication helps us feel better, we’re motivated to keep taking it. When change happens quickly, it’s easy for people to see or feel the change and be motivated. But it’s much harder to be motivated by small, incremental changes we don’t notice.
When a car accident in grad school landed me in long-term physical therapy, at first there were real milestones: removing the sling, stiffness in my neck noticeably improved, but then I felt like I hit a wall. Was the physical therapy doing anything? Small comments from various therapists about improvements they would notice and narrate when they saw me a week or two later really made a difference to my psychology to keep going.
In Annette McKinnon’s article on becoming a more engaged and health literate patient as she learned to cope with rheumatoid arthritis, she explains how a turning point came for her when her trusted physical therapist convinced her to persist with one easy exercise as part of her daily routine. The moment that made such a difference was a simple comment by a new specialist. During a routine trial assessment he commented, “You have good muscle tone in your abs.”
As Annette explains, “This amazed me. After 15 years with sore feet and hands and very little exercise, making an effort to do one small exercise actually made a difference. The fact the doctor was a specialist who saw many people with RA gave the comment even more impact. For her it was a mere observation, but for me this information was new motivation. I redoubled my efforts to change for the better and be more active, and started learning Arthro-Pilates.”
Narrating these small changes for patients can have profound effects. Sometimes it’s done during a physical exam, or it can be narrated as notes are entered in the medical record. How are you helping people recognize incremental improvements?

October Health Literacy Month Blog Series

Check out articles by:

  • Patients, like Randi & Gary Oster, on the transition from pediatric to adolescent/adult care.
  • Family caregivers, like Regina Holliday, on transitioning her husband from hospital to at-home hospice.
  • Thought leaders, like Carol Levine, on health literacy and palliative care.
  • Health literacy researchers, like Michael Paasche-Orlow, on the role it plays in care transitions.
  • Physicians, like Dr. Joseph Geskey, who writes about the challenges of transitioning his own father from hospital to home.
  • And patient engagement designers, like Emily Azari, on Transitioning to caring for an Ostomy

To view links to all the articles in this year’s series on health literacy and transitions, visit EngagingThePatient.

Tags: patient engagement, health literacy
Posted: Thursday, September 24, 2015

Time to Give Up the Car Keys?

By Geri Lynn Baumblatt, MA, Executive Director of Patient Engagement, Emmi Solutions

Engaging Patients & Families in Conversations about Aging & Driving

Nate O'Keefe
Co-author Nate O’Keefe (featured left) is the co-founder and CEO of Roobrik, a Durham, NC-based startup that builds online tools designed to help older adults and their families make informed care decisions. Nate has spent more than 10 years with companies including Modality, Epocrates, and AthenaHealth creating products that deliver high stakes health and care information to clinicians, students, patients, and family caregivers.

When families of aging parents ask clinicians and caregivers: “Should mom keep driving?” you know it’s a loaded question. You may feel like you’re being asked to be the bad cop. How do you make recommendations that minimize risk for your patient and other drivers and pedestrians?  How do you help families think through the trade-offs between safety and independence?
It can be even more difficult to broach the subject when health conditions arise that make driving riskier and you’re NOT asked about it. For most of us, driving was our first real taste of independence and it defines our ability to be productive, social, and engaged in society.  How do you steer someone down the path of cutting back or stopping while helping them understand there are alternatives (and even benefits) to giving up the keys?
For those of you who don’t talk with families about driving as part of your routines, or who still struggle with difficult situations, we offer three resources:
  1. Your clinical peers
For many patients, an office visit is not sufficient to fully evaluate driving ability, and without an accurate picture of ability, you risk having your patient either stop before they need to or continue for too long. Here’s where an occupational therapist can be your best friend. In a standalone practice or as part of a driving clinic, OTs can do functional clinical and road testing to assess ability and recommend modifications to make driving safer. Find an OT-CDRS.
  1. Best practices
In 2010, the AMA and NHTSA collaborated to produce the Physician's’ Guide to Assessing and Counseling Older Drivers. This free publication is extremely comprehensive and highly practical, covering assessment, rehab, medical conditions, state laws, and much more, with frequent sample scripts to use for difficult situations and conversations.
  1. Tools to engage patients & families
    This issue often marks the transition from doctor-patient to a doctor-patient-caregiver relationship. All of the sudden, you’re not just engaging directly with the patient but also their concerned family. After all, the family is often responsible for carrying out the decision and supporting the patient through this transition. In addition to traditional resources like the AARP, free interactive tools to assess driving ability like the one developed by Roobrik can help families assess the situation and make a plan for limiting or stopping driving.
Remember, this issue if often the beginning of an important transition. Driving safety presents an opportunity to start a dialogue about changing needs and to put a process in place that encourages open communication around not just health and wellness issues, but the care issues that will begin to define this new phase of life.
October is Health Literacy Month on EngagingThePatient

Hear from patients, family caregivers, clinicians, health literacy researchers, patient educators and others about the intersection of health literacy and transitions every weekday in October. Visit engagingthepatient.com to read the articles or to subscribe to the blog.

Tags: patient engagement, communication, family caregiver
Posted: Thursday, August 27, 2015

Helping People Find Their Language of Recovery

By Geri Lynn Baumblatt, MA, Executive Director of Patient Engagement, Emmi Solutions

David FestensteinCo-author David Festenstein (featured left) is a communication specialist, coach and professional speaker who made a remarkable recovery from a stroke which had paralysed his right side and left him unable to walk. More about his story can be found at www.strokerecovery.co.uk. To connect with David, please email him at david@strokerecovery.co.uk or by phone +44(0)1923 663275 in the UK or on Twitter @RecoveryGuru.

Recovering from an injury, procedure or stroke isn’t just hard physical work, it’s also hard mental and emotional work. After a hemorrhagic stroke, this is something David Festenstein experienced first hand. People are depressed and discouraged, and it’s easy for them to focus on what they’ve lost. These thoughts can actually affect their road to recovery. But positive thoughts can fuel a better recovery. Studies show it can affect the immune system (e.g. Kohut,  et al. 2002 and Blomkvist et al., 1994) and help people stay more socially engaged (Carver et al. 2003). But in the aftermath of something like a serious stroke, how can we help people get there?

Getting It Down On Paper

Ask patients to keep a diary where they (or if writing isn’t possible, a family member) can record their thoughts and frustrations and what’s happening. But also encourage them to write down anything good that happens or anything they’re grateful for no matter how small. David started by looking around at other stroke patients and realizing that even though his was bad, because he was left-handed and the stroke had affected his right side, he could still write. This reframing gave him a sense of gratitude for what he still had.

David tried to find a few good things each day and wrote them down. After his first shower and shave in the hospital made him feel human again he thought: “if I can have a shower and be clean every day, then i can get through this.”

Over time, the practice of noticing and writing down anything good adds up and help creates a more positive outlook. This also creates a record of progress where people can look back through it and see there is change, maybe change they didn’t notice at the time.

Helping People Find Determination

Also help people write down personal goals that matter to them. For David it wasn’t just to use his hand or walk again, but:
  •   To be able to hug my family with both arms
  •   To walk to the toilet and back
  •   To be able to type again on the PC
  •   To visit my dad in the care home

Writing With Belief and Intention

His physical therapist gave him what seemed like the strange “exercise.” He was to rest his paralyzed hand on a cushion and focus on it while opening and closing his good hand. Even though it wouldn’t feel like anything was happening, it would help his brain re-route its neural pathways. The act of writing through recovery is similar. It may not seem anything is happening, but our brain is processing our path through recovering and learning how to think about recovery.

During those days when he was just staring at his hand and nothing seemed to be happening David would think and also write: “I can do this. I will get there. This will happen.” He noticed as he used this kind of language, he felt it improved his physiology. And after a few days, his fingers just barely began to flicker. But that gave him the inspiration he needed to go two more weeks until he could open and close his hand.

How do you use journals as part of recovery?

Family members also find them helpful - to see that progress and process their role in recovery. Do people ever share insights with staff? Tell us your stories.

Tags: patient engagement, communication, personal healthcare
Posted: Wednesday, July 29, 2015

Engaging Patients Before You Even See Them: Tools to Help Patients Prep for Appointments

By Geri Lynn Baumblatt, MA, Executive Director of Patient Engagement, Emmi Solutions
Co-author: Peggy Zuckerman, Patient Advocate

For both patients and providers, appointments often are not all they could be. Ill-prepared and stressed by the problem and the visit, patients may not remember all their symptoms and can forget both their medications and elements of their own medical histories. Doctors are known to interrupt, and can make a diagnosis too soon. Helping patients create a more coherent history and giving them access to any existing lab or test results before they come in can improve the in-person visit.

A new Patient ToolKit from the Society to Improve Diagnosis in Medicine helps patients think through and capture their symptoms and history in advance. It helps them create a medication list and any treatments tried so far. When patients fill this out at home with access to their own records, it’s also likely to be more accurate. The toolkit also gives clinicians insight into patients’ concerns, how they care for themselves and view their problems.  

As part of this, if patients have their labs and can review them before the appointment, they can prepare questions, and with a bit of homework, may understand them. A second appointment to review labs might not even be needed, and may lead to an earlier diagnosis.

Getting down to the details

Other tools can help patients prep for a specific visit, like a chronic pain consult, in a more meaningful way. For example, patients can view a web-based program at home. (Clip courtesy of Emmi Solutions).   

This gives them time to contemplate their personal treatment goals. They may be walked through an exercise to help them recognize what they would do if they had better control over their pain:
  •  Take the kids or grandkids to the park?
  •  Get back to a favorite hobby?
  •  Get through a full day at work?
  •  Or take fewer pills for the pain?
Giving people time and tools to help them hone in on their personal goals provides meaning for the consult and treatment plan beyond: “I would like to have less pain.”

Most importantly, these pre-appointment tools give people time to track and document their pain, and give them insight on how to describe the quality and architecture of their pain. People want to feel better. Most are willing to do a little advance work to make progress; they just need a bit of help knowing where to start and what to do.

Peggy Zuckerman is a Patient Advocate with expertise in kidney cancer issues. She is also on the Board of the Society for Participatory Medicine, a Patient Consultant for Prometheus Labs, and a Patient Reviewer for PCORI and the Dept of Defense. She was part of the SIDM (@ImproveDX) patient panel to develop the Patient Toolkit. @peggyzuckerman

Tags: patient engagement, communication, doctor's appointment, technology
Posted: Tuesday, June 30, 2015

Channeling Your Inner Sherlock Holmes

By Geri Lynn Baumblatt, MA, Executive Director of Patient Engagement, Emmi Solutions
Lynn Charbonneau
Co-author: Lynn D. Charbonneau, MBA, Director of Patient Experience at Northside Hospital
Making a personal connection to the patient right from the start can engage them and set the tone for their entire experience. But there’s a better way than simply asking a patient, “How are you?” When you step back to think about it, is it any wonder people often reply, “How do you think I am? I’m lying in a hospital bed.”  

How can we ask a more personal question and make a better connection? Look for cues and clues. Are there flowers in the room?  If yes, say, “Who sent you the lovely flowers?” Is there a card on the bedside stand or in the window sill? Who sent it? Is there a photograph in the room?  What are they watching on TV? Noticing anything new can spark a conversation and gives them a chance to talk about the people and things that matter to them.

Next time you return to their room, if there doesn’t seem to be anything new to ask about – is or was there a person at the bedside to ask about? Or if a patient looks concerned: “You seem worried, what’s on your mind?”  

This method of “asking with skilled inquiry” with open-ended questions gives the patient an opportunity tell their story. It’s an invitation to open up.

At Northside Hospital, HCA West Florida Division, every meeting, every huddle is opened with a “Mission Moment.”  This creates an opportunity for everyone to tell these stories, gives everyone a chance to recognize how we feel connected to the patients, and to feel good about the work we do.  This also creates a better experience and more of a connection for the caregivers. It’s easier and more meaningful to care for people we feel connected to.

Recently, I was rounding and saw one of our patients and his wife was sitting on the bed. I walked in and introduced myself, and he asked me “Why is it YOU people always ask the same questions over and over? Don’t you talk to each other?”

I explained we ask the same questions because we want to make sure patients tell us as much about their history as they can. Then I asked, “Who is this lovely lady?” 

A big grin came across his face, and he said, "This is my wife of 46 years.” His perspective shifted from being annoyed to being cared about and having a chance to talk about who matters to him.

Lynn D. Charbonneau, MBA, Director of Patient Experience at Northside Hospital, part of HCA’s West Florida Division.  With 39 years of healthcare experience with 25 years in patient experience improvement, she has a national reputation for her work around coaching and transforming organizational culture. @ldcharbonneau

Tags: patient engagement, communication, rounding
Posted: Thursday, May 28, 2015

From Across the Hospital Bed Boundary

By Geri Lynn Baumblatt, MA, Executive Director of Patient Engagement, Emmi Solutions
Touch is comforting and reassuring. In some settings it’s been shown to reduce patient anxiety and length of stay.* Yet, a strange thing happens when someone in your family is in a hospital bed. Once there, attached to machines and IV lines, despite wanting to comfort and reassure them, they seem physically out of bounds. It often seems like a hand on their shoulder or holding their hand is the only safe contact.

Despite growing up and spending a lot of time in hospitals rounding with my dad, when he was the one in the hospital I was surprised how awkward it seemed to touch him in any way.

Then, sitting there feeling fairly useless, I watched my sister-in-law (a resident at the time) come in, and with gloved hands, gently rub away the dead, flaking skin on his arms and legs. Then she rubbed his feet. It was probably the best hour of his hospital stay. He may have even forgotten he was there.

Why is it so intimidating for families to touch someone once they’re in that bed? I know I was afraid of the machines, by how delicate and friable his skin was, and by the healing wounds and scabs on his legs. I wasn’t sure what was safe.

Even at the worst moments, families are often afraid to breach the clinical boundary of the hospital bed. In the movie Love Story, Ali MacGraw, lying in bed, terrified of dying, asks Ryan O’Neal to hold her. (For a 70’s flashback, see the clip here.) He awkwardly tries to lean over and hold her from the bedside until she says, “No, really hold me.” So he finally climbs into the bed with her.

The fear of touching patients in bed plays into the fear families often have about taking patients home to care for them. If we proactively spend more time helping family members understand what’s okay, whether it’s knowing if it’s all right to rub a patient’s back or showing them how to care for wounds, we can help build their confidence to care for family members at home. Then it won’t seem like such a sudden shift from sitting by and watching care to being responsible for giving care and literally being more hands on.

And in the hospital, patients and families may feel less like they’re staring at each other across an unspoken borderline.

* MacIntyre, B. et al. Altern Ther Health Med. The efficacy of healing touch in coronary artery bypass surgery recovery: a randomized clinical trial. 2008 Jul-Aug;14(4):24-32. Retrieved May 23, 2015 from: http://www.ncbi.nlm.nih.gov/pubmed/18616066

Tags: family caregiver
Posted: Wednesday, April 29, 2015

Meeting the Patient’s Communication Needs

By Geri Lynn Baumblatt, MA, Executive Director of Patient Engagement, Emmi Solutions
Co-author: Randi Redmond Oster, author of Questioning Protocol

When Randi Oster’s 15 year-old son Gary was first admitted to the hospital for Crohn’s disease, he was in massive pain. Unfortunately, his regular GI doctor is away at a conference.  The family waited for hours until a physician arrived and did a quick exam and said, “He’s an excellent candidate for surgery.”

The family was stunned. Surgery? No one had ever mentioned this before. To them, this came out of left field. And based on Randi’s past experience with her father, she felt any surgery was fraught with risk and was something to be avoided whenever possible.

Randi had nothing but questions. And their family was not comfortable deferring to the first recommendation. She realized launching into a barrage of questions might put the doctor on the defense.

She decided she first needed to help the new doctor understand their family. She explained that her son is analytical and literal; and that he likes and needs a lot of details and facts.

Randi also explained that while the protocol might be surgery, their family’s process was to gather options, ask a lot of questions, understand the risks and benefits so they can share in the decision and be involved and informed every step of the way.

By being clear up front about the level of information they needed, the physician and medical team were able to meet expectations and provide more detailed and in-depth communication to help find the best option for Gary.

Meeting communication needs: one size does not fit all

Most patients and families won’t proactively jump in to explain what they need or want when it comes their communication style and preferences. Ask patients who they are and what to they want. For some, a lot of details are overwhelming, for others these details help them think through the nuances. And ask how involved would they like to be in decisions?

Research shows that when patients share in the decision making process most (74%) have more realistic expectations.[1] That can make for better decisions and a better patient and family experience.

[1] Source: Impact of Decision Aids The Cochrane Library 2014, Issue 1

Randi Redmond Oster is the award winning author of Questioning Protocol, which helps patients navigate the healthcare system and medical professionals understand the patient perspective. She is also the co-founder and president of Help Me Health, which transforms how healthcare thinks about and delivers patient experience to achieve better outcomes. @helpme_health

Tags: communication, shared decision making
Posted: Monday, March 30, 2015

How to Start a Hard Conversation: Engaging Patients in Advance Directives

By Geri Lynn Baumblatt, MA, Executive Director of Patient Engagement, Emmi Solutions
Diana Dilger
Co-author: Diana Dilger, Senior Writer, Emmi Solutions

No one likes to bring up death. People like it even less when it’s about them. But that’s not a good reason to avoid it. It’s an important discussion, and we have a responsibility to promote these conversations so patients can have a say in what they do and don’t want.

How do you bring it up?
First, if someone isn’t seriously ill, bringing up advance directives (AD) can seem jarring and out of the blue. It can help to ease into it by saying things like, “Since everything looks good now, this would be a great time to talk about what you might want if you ever do need something and can’t speak for yourself.” Or normalize it: “It looks like you don’t have AD on file. We try to have those for everyone in case you’re ever in an accident; it’s a great safeguard.”

For people who are ill and know something could happen, it might sound more like, “We have your treatment planned for now, but let’s talk about what you may or may not want if treatment doesn’t go the way we hope.”

Then, explain how ADs are a gift to their family. If someone is in an accident or becomes unable to speak for themselves, and there aren’t ADs, it can create a lot of stress, guilt, disagreement, and confusion for their family. So getting it down in writing and alerting everyone to what they want in advance can be a big relief. It's like leaving a guide book for their loved ones.

Address Common Concerns
People are afraid once they create ADs, they’re locked into them. Letting people know they can change them at any time if their wishes change puts people at ease. It also helps to emphasize that putting an AD in place does not mean they’ll get less care. Instead, saying what they do and don’t want helps ensure they’ll get the care they prefer.

National Healthcare Decisions Day
April 16 is dedicated to encouraging people to discuss and document advance directives.
Check out all the events going on for National Healthcare Decisions Day.

Help Everyone Understand
To help educate the public, the multimedia Advance Directives Emmi program will be freely available to the public for two weeks, starting April 16. View it here.

Learn from Experts
A complimentary webinar on with Dr. Ira Byock and Dr. Sheri Kittelson on
Engaging in End of Life Decisions: How to Turn Difficult Conversations into Clinical Opportunities
11 am Central on April 16. Sign up here.

Diana Dilger is a senior writer at Emmi Solutions. She wrote the multimedia Emmi programs on advance care and end-of-life treatment (Advance Directives, Hospice Treatment Options, and Palliative Care). In addition to encouraging others to talk about end-of-life wishes, she boasts a shiny, new set of advance directives for herself. @dianadoesthis

Tags: communication, personal healthcare, end of life
Posted: Thursday, February 26, 2015

Engaging Patients in Hourly Rounding: Improving the Patient and the Caregiver Experience

By Geri Lynn Baumblatt, MA, Executive Director of Patient Engagement, Emmi Solutions
Co-author: Greg Berney, Senior Manager of Patient Experience at Cone Health
Several months ago, a Patient Experience Manager at Cone Health was rounding with a nurse on a med/surg department. We’ll call him “James.” As James discussed different patient experience improvement tactics, he verbalized a concern with hourly rounding logs. “Each time I put my initials on that log I feel frustration with leadership because it feels like they don’t trust me.” Leaders, in turn, felt frustrated because the logs were their only way of ensuring hourly rounding was happening.

While James identified a lack of trust as his main frustration, this also articulates a greater challenge in improving the Patient Experience: ensuring our goals and how we motivate caregivers to meet those goals match. As James would tell you, there is nothing about writing his initials on a log sheet that help him provide better care at the bedside. In fact, the log sheet introduces a new goal and motivation for many caregivers - fill it out faithfully and you won’t be hassled by your boss! Hourly Rounding had become a task for James instead of a tool that to provide better care.

How can we tap into caregivers’ natural motivation, and partner with patients, to improve the patient and caregiver experiences at the same time?

At Cone Health, Hourly Rounding was re-launched with a specific focus on helping caregivers understand what’s in it for them. The entire training is around helping each nurse proactively communicate to their patients in a way that ends up reducing call lights.

The best part: patients who hit their call light less frequently tend to do so because they feel their needs are being met!

Engaging Patients In the Process

Instead of using rounding logs to validate their process, Cone has added a question to the Patient Perception of Care survey specifically asking the patient if a nurse came in the room every hour.  Additionally, some patients give this feedback in real time by keeping their own log sheet of which staff members came in the room and when.  

Patient tracking provides added patient engagement benefits that aren’t available through traditional tracking methods:
  • Patients automatically have a better understanding of the processes, which reduces anxiety or fear about being in pain or being forgotten.
  • This allows patients to more naturally partner with caregivers to ensure their needs are met on a mutually convenient schedule.
  • Staff have additional motivation to explain the purpose and process of rounding.  
One could easily view Hourly Rounding as a transactional task - something that we do to patients. Instead, engaging patients creates a more interactional model in which patients are informed and empowered.  In this way, patient engagement leads to improved caregiver experience as well.  

Greg Berney is the Senior Manager of Patient Experience at Cone Health in Greensboro, NC where he addresses organizational Patient Experience and Patient Engagement opportunities from problem identification through innovation, planning, and execution of improvement initiatives. Greg provides project management and consultation for an organization of 6 inpatient hospitals and 100+ emergency, ambulatory and outpatient areas in close collaboration with senior administrative and physician leadership.  Greg’s recent speaking engagements include the Beryl Institute Patient Experience Conference, Dignity Health’s Patient Experience Summit, and the NextGen Patient Experience Summit. Follow Greg on Twitter at @gregberney.

Tags: patient engagement, rounding
Posted: Friday, January 30, 2015

When Patients Befriend Dr. Google

By Geri Lynn Baumblatt, MA, Executive Director of Patient Engagement, Emmi Solutions
Co-author: Kerry O’Connell, a construction executive from Denver, CO
For mKerry O'Connellany patients, the Internet becomes their best friend. They spend evenings searching for cures for damaged nerves. When Kerry O’Connell fell off a ladder and destroyed his arm, and when surgeries and treatments failed and made his pain and function even worse, he went, as most of us do, to look for answers online.
When showing this online research to his physician, he was advised to be careful as much of that info was not reliable. Fair warning, but when people are searching for answers and trying to collaborate in their care, they’re often dismissed and made to feel like they overstepped.
Kerry found out he could access medical journals from the med school library. For his next visit he came armed not with flimsy Google search results, but real studies. His doctor was not impressed, saying even studies from last year were out of date and nowhere near the current state of the medical art.

People are searching for a reason

It’s often a sign they feel uneasy and don’t have the answers they need. It’s also an opportunity to find out what those are. In Kerry’s case, he was looking for alternatives to more surgery, drug side effects, better descriptions of typical outcomes, and empathy from others who had gone through the same thing.
Anytime we can provide patient-friendly resources that proactively answer these questions, it can help keep people from going down those online rabbit holes.
But people can also find meaningful information. Sometimes it’s the empathy and support from connecting with others. Other times, people like Dave deBronkart can find out about a medical treatment for his rare cancer by talking to an online patient forum. A treatment his physicians didn’t know about at the time.
As patients and families increasingly turn to online resources, how do you help them find the good ones? And how do you work with them?

Kerry O’Connell is a construction executive from Denver, Colorado, who builds infrastructure by day and lobbies the healthcare industry by night. His favorite causes include infection prevention, medical device training and creating a post-harm standard of care. His articles have appeared in places like Health Affairs, and he regularly provides the patient perspective at conferences like the Summer Institute for Informed Patient Choice.

Tags: patient engagement, doctor's appointment, personal healthcare
Posted: Friday, December 19, 2014

Beyond Sticks and Stones

By Geri Lynn Baumblatt, MA, Executive Director of Patient Engagement, Emmi Solutions
The old adage ends “…but words will never hurt me.” And most of us agree words may hurt feelings but not cause physical pain. However, we also know the emotional and physical are not completely discrete and separate experiences. We’ve all experienced how language or even a friendly text message can affect our mood and emotions. But more evidence points to language having an impact on at least some physical experiences.
This year, at the International Conference on Communication in Healthcare, a symposium on communication and pain discussed recent research showing that while words, themselves, may not literally hurt people, language, tone, or just avoiding the word “pain” can have an impact.
For example, women recovering from a C-section were either asked: “How are you feeling?” or “Do you have pain?” Did the phrasing of the question change reported pain? It did.
  • When asked “How are you feeling?” only 24% of women reported pain.
  • And when asked, “Do you have pain?” that percentage more than doubled, with 54% reporting pain.
A similar study asking women to rate “pain” vs. “comfort” on a 0-10 point scale also found the women who were explicitly asked about pain had higher pain scores.
As psychometricians and political pollsters know, how we ask questions matters. And that’s not always a bad thing. In this case, asking a more open-ended question may improve the experience or perception of pain.

Tags: communication, pain
Posted: Thursday, November 20, 2014

Helping People Make Changes Beyond the Exam Room

By Geri Lynn Baumblatt, MA, Executive Director of Patient Engagement, Emmi Solutions
Guest blogger: Scott Strange, a 2014 MedicineX ePatient Scholar has been a Type 1 diabetic since 1970. He is especially interested in removing the stigma associated with so many health issues and with mental health in particular. He blogs at Strangely Diabetic and you can find him on Twitter as @strangely_t1.

Many things can affect an individual’s ability or willingness to follow our treatment regimens. Cost, time, life, not believing it’s important, maybe not really understanding, stress, burnout, and depression to name a few.
Having been a Type 1 diabetic for 45 years, I sometimes need more than my annual physical may reveal. And patients in any number of chronic communities do as well. Those extra needs often directly address why I am having so much trouble being ‘compliant’, doing what I am supposed to be doing to maintain my health over the long haul, not just until my next appointment. And honestly, I might spend two or three hours a year with doctors -- leaving me up to my own devices for the other 8758.
But the truth of the matter is that we are rarely asked ‘why?’ and just told to do better, when what we really need is help changing our behavior. Behavior change is hard work, sometimes we’re being asked to stop doing something the way we’ve done it our entire lives. It can be done, but it’s hard to do it alone. We really need the support of our medical team.
Imagine being told to do better, being told that terrible complications will set in if you don’t do better, and then being made to feel guilty because we couldn’t do better. Our medical teams often don’t hear what is going on outside the exam room -- and if they do, they may often feel they can’t do anything about it. I hear too many stories of patients leaving the exam room angry, guilty, teary-eyed and thinking they’re failures.
Now think of that same patient who this time hears: “Here are some things we can work on” or “What can I do to make this easier?” or “How about we try this instead, what do you think?” This inclusive language can help people engage and feel less alone.

Both of you are now looking at the same problem, which is not to see a non-compliant patient or feel like a chronically ill failure.
The real problem is that there are forces at work influencing my behavior that my medical team doesn’t understand. And those forces can be minimized only if those of us on both ends of the stethoscope understand what they are and work together to overcome them.

As a patient I have a responsibility to work toward minimizing those forces. And my medical team has a responsibility to help me accomplish those changes and move beyond the failures.

Tags: patient engagement, doctor's appointment, shared decision making
Posted: Friday, October 31, 2014

Confronting Health Literacy: Helping Patients Understand

By Geri Lynn Baumblatt, MA, Executive Director of Patient Engagement, Emmi Solutions
Pain is a huge part of the patient experience. And while we can’t eliminate pain, helping patients understand how to talk about their pain, medications, and multimodal treatment can go a long way to improving what people go through both in the hospital and as they transition to home. This has been one of the themes on the Health Literacy Series. Here are a few of the highlights:
Another challenge is the role health literacy and patient understanding plays in both over- and under-treatment. Helping people understand and share in treatment decisions can be complex. But the more we think about the short and long term effects on quality of life, and the many human and monetary costs of inappropriate utilization, it’s worth finding ways to help patients understand:
For more like this, check out the 2014 Health Literacy Month Series: The Recap.

Tags: patient engagement, shared decision making
Posted: Tuesday, September 30, 2014

Asking Questions, Not Just Giving Information: Shared Decision Making is Relational

By Geri Lynn Baumblatt, MA, Executive Director of Patient Engagement, Emmi Solutions
Gonzalo BacigalupeGonzalo Bacigalupe is Professor of the Master of Science in Family Therapy Program and the PhD in Counseling Psychology, College of Education & Human Development at the University of Massachusetts Boston. He is President of the American Family Therapy Academy. Bacigalupe is co-principal investigator of a Patient-Centered Outcomes Research Institute Pilot research project: Influence and evidence: Understanding consumer choices in preventive care.

Because the benefits of cancer screening and its usefulness for a wide group of patients are uncertain and the harms may outweigh the potential benefits, doctors and patients need to engage in shared decision making (SDM). And while this sounds straightforward, it’s often challenging.
We’ve both been involved in developing SDM tools to guide breast and prostate cancer screening, Gonzalo with a focus on Latino patients. 
Most SDM research is based on the idea that patients make individual decisions. So the focus has been on understanding how patients acquire and make sense of information that’s often packed with statistical, epidemiological, and probabilistic data. And we ask how well people comprehend it. 
Missing from this equation is how many people operate not just as individuals but also as one person within a net of family and community relationships. Most Latino patients talk through these decisions not just with their close relatives, but also with their extended family and other significant members of their network. Decisions about prevention, diagnosis, and treatment are not just in the working of their individual minds or a cognitive process, but located in the ecology of relationships.
For vulnerable patients, besides having more difficulties at making sense of complex data, the question of how we explore their approach to decision making is central and requires cultural humility.
So what can clinicians do?
Ask about patients' social and cultural context and be curious about how they make sense of healthcare decisions. These questions are an example of how we may capture the rich context and story that may play a pivotal role in how the patient participates in the decision making process.
I know this is a lot of information, if you were to discuss this with a family member or friend, what would be the outcome of the conversation?
What other information do you need to help you make a decision you feel comfortable with?
How would these options affect you and your family’s day-to-day life and their ideas about you?
The epidemiological or probabilistic data, no matter how attentive is to the literacy level of a specific community, will be meaningless if we do not understand who and what plays a significant role in complex healthcare decisions.

Tags: communication, shared decision making, family caregiver
Posted: Wednesday, August 27, 2014

Red Light, Green Light: Helping Patients Weigh the Evidence

By Geri Lynn Baumblatt, MA, Executive Director of Patient Engagement, Emmi Solutions

Casey Quinlan, who contributed to this post, is a patient advocate, hospital medicine journalist, citizen scientist, 2013 MedX ePatient Scholar, speaker, writer, and healthcare policy wonk dedicated to putting the patient, and the patient's voice, at the center of healthcare.

Patients and families often have to wade through a flood of information about the latest in medical science. And especially when in the hospital, they often need to try to understand the pros and cons of treatments without time for research and while they’re in pain or recovering from a procedure.

Here’s a tool you can use as you partner with them to help them to understand the evidence: TheNNT.com. NNT = Number Needed to Treat.

The site uses stoplight graphics - red, yellow, and green - to show the scientific evidence of the benefit, or lack thereof, of treatments, diagnoses, and risk assessments. There’s also a black label for if the harms outweigh the benefits. The site authors are all practicing emergency medicine or critical care MDs.

For example: Cardiac defibrillation prevents death in 38% of cases where it’s used (green light all the way); Coronary bypass has no effect on 10 year survival post-heart-attack in 96% of cases (yellow light, needs more study); Aspirin to prevent a first heart attack or stroke has no benefit in 99.94% of cases (red light, don’t bother).

This is just one tool that can augment conversations and help patients and families get a better understanding, so they have fewer deer-in-the-headlights moments when facing treatment decisions.

Tags: patient engagement, shared decision making
Posted: Thursday, July 31, 2014

“Be prepared” is more than a catchy boy scout motto, it’s good patient care

By Geri Lynn Baumblatt, MA, Executive Director of Patient Engagement, Emmi Solutions

Stuart S.W. Grande, who contributed to this post, is a post-doctoral research fellow in shared decision-making at the Dartmouth Center for Health Care Delivery Science, interested in the value of new technologies for enhancing the patient voice (patient engagement).

A surprise party can be exhilarating, but waking up from surgery and finding out you can’t drive for 2 to 6 weeks is not. But that’s what happens to many women who are uninformed about recovering from a scheduled C-section. Other women panic when their belly swells up after an abdominal hysterectomy, something they should know to expect, but sometimes aren’t told about.

Setting expectations about recovery doesn’t just help patients prepare, it reduces their stress. After all, when people know to expect things like pain, they usually tolerate it better. And knowing it’s normal for something to look bruised, oozy, and scary can help reduce late-night panicky calls. More importantly, they have a better sense of when something is wrong and should call.

Patients can also be more activated to participate in their recovery. For example, sometimes, like after orthopedic surgery, patients aren’t told about the potential weight gain that comes from being less mobile. While obvious to clinicians, patients often don’t consider weight gain as a side effect. For many athletes, returning to the field of play is painful and hard with no guarantee. In these situations, gaining a few pounds makes recovery feel much worse.

Of course there’s a lot we can do to help set expectations. Be specific, practical, and honest about what they’re going to see and feel. Is something going to look really bruised and upsetting? While discharge may look like normal healing to a clinician, it can be frightening and challenging for people who aren’t used to seeing it, especially on their own body.

When people know what to expect after a medical intervention they can plan and prepare. Caring for them like it was the first time, your patients will be grateful.

Tags: patient engagement
Posted: Monday, June 23, 2014

Strategies to Help Patients Make Medical Decisions

By Geri Lynn Baumblatt, MA, Executive Director of Patient Engagement, Emmi Solutions
Medical decisions are daunting. Just walking people through their treatment options can be time-consuming. But how can we help people think about their preferences and life and make a decision that's right for them?

One approach is providing people with videos or written stories (narratives) of what others chose. After all, stories are more engaging and compelling than throwing a lot of numbers and information at people, but do they help people make good decisions? Researchers continue to take a closer look at the effects of narratives, and unfortunately they seem to cause different types of biases and issues. The issue with narratives may be that they are so compelling. (To read more about recent research on patient narratives visit http://engagingthepatient.com/2014/06/25/patient-narratives-shared-medical-decisions/)

Another approach is to help people "try a decision on." For example, instead of simply asking a woman with breast cancer how she feels about breast reconstruction or a prosthetic, ask her to think through different situations, like how she would feel putting on a favorite dress, changing in a locker room, or wearing a bathing suit. This type of thought exercise may help people get a sense of their own narrative without feeling the emotional tug of someone else's story.

Clearly, we need more research to know what we can do to help people apply their preferences to the often complex matrixes of treatment options, side effects, and treatment burdens. What have you tried in your practice to help people integrate their personal preferences into their decisions?

Tags: patient engagement, communication, personal healthcare, shared decision making
Posted: Wednesday, May 28, 2014

When Caring for the Family Reduces Patient Stress

By Geri Lynn Baumblatt, MA, Executive Director of Patient Engagement, Emmi Solutions
What do patients experience as they drift in and out of awareness in an ICU?
Recently, a couple of long-term ICU patients both described how even when they weren’t fully conscious, the mood of the staff as they moved in and out of their room was still apparent to them. They could tell if people were present or smiling, and how even the one-sided conversations staff had with them were meaningful.
One patient also described how he had a very strong sense of his parents’ stress as they kept watch by his bed and how it reduced his stress to hear how the staff was caring for his parents.
It's impossible to always be “up,” but care, hospitality, and mindfulness of close family and friends may reduce patient stress, even when we think they’re not aware. After all, while everyone is worried for the patient, their worry is often for their partner and family.

Tags: patient engagement, communication, family caregiver
Posted: Monday, April 21, 2014

Looking Out for Family Caregivers

By Geri Lynn Baumblatt, MA, Executive Director of Patient Engagement, Emmi Solutions
A hospital out west recently surveyed people with pancreatic cancer and their family caregivers about their emotional highs and lows over the course of treatment. While the graph of the patients’ emotions looked like a fairly intense rollercoaster ride, the graph of their family caregivers' emotions actually showed higher highs and lower lows.
To understate the obvious, family caregivers take on a lot -- not just the physical care, but the emotional stress. And, as this small survey showed, caregivers may actually experience more hope when things go well and more stress and depression when they don’t.
More and more hospitals have started offering caregiver classes to try to prevent burnout and help prepare people for what lies ahead. Family caregivers often don't realize what they're taking on and how it will affect their social, emotional, and even physical health. At first, it's sometimes hard to see that it can quickly become a challenge just to leave the house for a few hours to run errands or get a good night's sleep, let alone deal with any mood swings or memory or dementia issues.

These types of caregiver classes can also serve as social support and a way for them to meet others to talk with. What is your hospital doing to help prepare family caregivers so they don't end up a casualty of caregiving?

Tags: family caregiver
Posted: Tuesday, March 25, 2014

Inviting People to Share in Decisions

By Geri Lynn Baumblatt, MA, Executive Director of Patient Engagement, Emmi Solutions
Last month’s tip examined The Case of the Unfilled RX and involving people in any decisions to start a new medication. And while research shows most people want to be involved in shared decision making (SDM), they may not feel comfortable entering into this new dynamic with a clinician. After all, they may be embarrassed to voice concerns – like if they’re afraid of needles or injections.

And there are people who say they don’t want to participate in SDM. But we also know there’s no way to predict who is and isn’t interested. So the most important thing to do is ask. Even if they aren't up for SDM, everyone needs to be invited. We need to initiate it. And it may take some coaxing to get people to open up about what matters to them. After all, aren’t they supposed to be a good patient and do whatever the doctor says?

That said, I think there’s a way to invite people and help engage even those who are reticent. Try something like this:

“There’s no one perfect treatment for your condition. And there are pros and cons to all of them. So, I can tell you about the options, but I need your help to figure out which treatment is best for you. After all, whatever we choose needs to meet your goals and fit into your life and schedule, or it’s not the best option for you.”

When put this way, I think most people understand they are the ones who have the other half of the information needed to make “the right” decision.

To learn more about SDM, a free PDF of an introductory article is available here.

Tags: patient engagement, personal healthcare, shared decision making
Posted: Monday, February 24, 2014

The Case of the Unfilled Rx

By Geri Lynn Baumblatt, MA, Executive Director of Patient Engagement, Emmi Solutions
With medical ads on TV some people go to doctor's asking for a medication they’re sure will cure what ails them. But more often, when a new medication is being prescribed, people are dubious. And they’re not likely to express it aloud. Do they really need it? Maybe their uncle took statins and now has leg pain – a valid point informed by real-life experience. Other times people may feel stigmatized if they need to take a second medication for something like diabetes, and if it’s an injectable, fear of needles is enough for many people to silently decide “no.”

So many reasons to avoid taking a drug, and yet we often assume people are simply non-adherent. But maybe we never made sure they agreed to take it in the first place.

People definitely need to understand what the medication is for and why their doctor thinks they should take it. But if we don’t ask patients about their goals and preferences, we can’t know if they do or don’t want it, or if another medication or treatment might be a better option for their lifestyle. But there’s no way to know without asking. We can’t expect people to feel comfortable volunteering this information. And without inviting patients to share their concerns and preferences, they may just nod, politely put the prescription in their bag, and walk right past the pharmacy.

Tags: patient engagement, communication
Posted: Monday, January 27, 2014

Helping Patients Understand the Big Picture

By Geri Lynn Baumblatt, MA, Executive Director of Patient Engagement, Emmi Solutions
When it comes to the big picture of a health condition and how it may affect people’s bodies and lives over time, it’s easy to take what we understand for granted and assume patients and families know, too.

I was recently struck by this while working on a decision aid for End Stage Renal Disease. When we tell people who are newly diagnosed or living with diabetes that over time it can cause kidney problems, do they really understand they may be on a trajectory toward renal disease, dialysis and kidney failure? Or do we simply say it can cause “serious problems” and take for granted they know what lies ahead? I think it takes a lot of people by surprise – and it’s not a nice one. In fact, we often begin our interviews of patients who are starting treatments like dialysis with what they wish they’d known.

A local nephrologist told me that as many as 30% of their first-time appointments never show up, because people with diabetes have no idea why they’ve been referred. We heard this from patients themselves in our Crohn’s Disease focus groups. We were concerned all the information about ulcers and anal fistulas was too scary and overwhelming. But what we heard is: this is the real information I wish I’d understood when I was first diagnosed.

Now, I’m not talking about “scaring people into being good patients,” or getting into all of this when someone is first diagnosed. Overwhelming people is not helpful. But making sure they understand enough about their condition and how it may progress can feed into why they’re being asked to do so much day-to day care. And it can help their family engage in their care, too.  

Tags: patient engagement, communication
Posted: Monday, December 23, 2013

Baby Steppin'

By Geri Lynn Baumblatt, MA, Executive Director of Patient Engagement, Emmi Solutions
Baby steps, goal setting, action planning … you may have heard of one or all of them. So instead of giving people an overwhelming list of all the changes they should make to their diet, lifestyle, and activity, this is a great way to help people make changes by taking baby steps. Give it a try.

Start by letting the patient make the decision about making one small, achievable goal they feel they can do that week. After all, when we are empowered to choose what we want to change and how, we’re a lot more likely to do it versus being told.

Then be prepared for pretty much any answer. If someone says they want to work on getting more exercise, ask exactly what they’d like to do first. Doctors have heard everything from: I need to clean my living room this week so I have a place to exercise, to I’ll walk 3 blocks, to I’ll do 100 push-ups everyday.

But how confident are they that they can almost certainly do it that week? Ask “on a scale of one to 10, how sure are you that you’ll be able to do this?"

Generally if people say anything less than seven, they need to set a more attainable goal or problem solve what they can do to improve their confidence so it’s in the high zone. Then follow up in one week to find out what they did.

Instead of being overwhelmed by everything they could do, people make a small change and gain confidence that they can change. And they’re usually encouraged and build on that success.

Like anything new, even something as simple as helping a patient set their first goal can be awkward. But like any procedure you’ve learned, it gets easier. And clinicians find they can do it in as little as two minutes.

If you want to learn more, people like Dr. Kate Lorig and Dr. Hilary Seligman have done great work on this: http://www.healthliteracy.com/article.asp?PageID=6111 & http://www.jabfm.org/content/19/3/324.long.


Tags: patient engagement, communication, doctor's appointment, shared decision making
Posted: Wednesday, November 20, 2013

Don't Forget "The Why"

By Geri Lynn Baumblatt, MA, Executive Director of Patient Engagement, Emmi Solutions
I don’t know about you, but I don’t tend to blindly do things just because someone tells me to. Yet we expect patients to do this all the time -- and when they don’t we brand them “non-adherent.” We all have that inner 3-year old that just wants to know “why.” But more than curiosity, we need to make sense of the information.

And when we don’t give people “the why,” or assume they already know why, they will fill in the blank on their own. Take this real example: a bariatric patient is told not to eat or drink 8 hours before his surgery. No reason. Just do it. He shows up having had breakfast. When asked why he didn’t follow instructions, he says “Oh, I thought my doctor just wanted me to start dieting.”

This person is not stupid, he was just trying to make sense of seemingly meaningless orders. A story closer to home: a friend of mine didn’t heed instructions not to smoke in the days after oral surgery. Only after a dry socket developed did the oral surgeon explain that smoking both affects healing and that any kind of sucking action, including cigarettes, and not just through straws, can dislodge the blood clot. Once back home and in pain she said, “Well, if I had known that, I wouldn’t have smoked.”

Tags: communication
Posted: Wednesday, October 23, 2013

Talk About Myths

By Geri Lynn Baumblatt, MA, Executive Director of Patient Engagement, Emmi Solutions
Big foot and the Loch Ness Monster aside, there are lots of myths and half-truths floating around healthcare. After all, if you’re breastfeeding there’s no possible way you can get pregnant, right?

Of course, you can wait to see if patients ask you about things like this, but chances are they may not realize something’s a myth, or a partial myth, especially when many things sound like common sense. Why would anyone doubt if bed rest is a good idea for low back pain? It certainly sounds right.

Plus, real experiences can reinforce myths. Many people still think the flu shot will give them the flu because they didn’t feel great the next day. They probably didn’t actually have the flu, but it still might mean they’ll avoid getting vaccinated for the next few years.

With something like breastfeeding it can just mean validating that it may play a role in preventing pregnancy, but it doesn’t guarantee a woman won’t get pregnant. For something like low back pain, it may be more challenging to help people understand that even though walking may hurt, that blood flow is important for their back to heal.

But proactively talking about common myths, and talking about them respectfully, can make all the difference in patient understanding.

Tags: patient engagement, communication
Posted: Friday, September 20, 2013

Be Psychic

By Geri Lynn Baumblatt, MA, Executive Director of Patient Engagement, Emmi Solutions
That’s right, when telling people about a procedure or a new diagnosis, it helps to be a little bit psychic. To be fair, you don’t actually have to be psychic, so much as seem psychic.

You probably already know the questions, fears and worries patients have around certain procedures or diagnoses: When is it okay to have sex again? Will my scar be noticeable? When can I drive again?

These questions weigh on people’s minds. And it may even be hard for them to concentrate on anything else you say until they get an answer. Sometimes they feel embarrassed to ask because they have a question about something like ED or depression medication, other times they’re embarrassed that what they’re worried about is something cosmetic, like a scar. Or it’s the real day-to-day concerns about being able to care for their family.

So, if they don’t bring it up themselves, normalize those questions with a simple "now with this procedure, a lot of people ask…" It’s amazing the relief they feel to know they’re not the only ones with this question and that they didn’t have to be the one to bring it up.

Tags: patient engagement, communication, doctor's appointment