	Blogs
	Patient Info

E-Newsletter

Enter your email address below to receive our monthly e-newsletter!

Patient Engagement Tip of the Month

Geri Lynn Baumblatt MA, For the last 20 years, Geri has worked to help people understand health conditions and procedures, orient them to their diagnoses, make more informed decisions about their care, and partner with their care teams. She oversaw the creation of the Emmi program library, and she regularly speaks and serves on patient engagement, patient experience, health literacy, shared decision making, health design, family caregiving, and heath communication panels for organizations like AHRQ, the Brookings Institute, Stanford Medicine X, and the Center for Plain Language. She serves on the editorial board for the Journal of Patient Experience, is on the board of the Society for Participatory Medicine, and published a chapter in Transformative Healthcare Practice through Patient Engagement (IGI Global). She currently consults on patient engagement, family caregiving, and health communication. Follow her on Twitter @GeriLynn

Showing all Blog Posts with tag: personal healthcare View All Blog Posts

Posted: Monday, June 03, 2019

There’s no place like home

By Dan Ansel and Geri Lynn Baumblatt

There’s no place like home. But going home to recover after a hospital stay can be daunting. And there’s good reason for concern. Even with the strides made in transitions to home, nearly 20% of discharged patients are readmitted within 30 days and over 50% within 1 year.¹

When people don’t thrive and recover well at home, it’s often because of the 3Ms: Medication, Memory, and Mobility.

Medication - Can you read the medication label? Remember how to take your medication? Do you have the hand dexterity to open the container? How about numeracy and health literacy skills to understand the instructions?
Memory - Can you successfully sequence self-care steps? Do you need a list or visual cues?
Mobility - Can you sit or stand safely; get in and out of a tub?

It’s easy to see how a problem with any of the 3Ms can contribute to a fall, medication issue, or infection. And not being able to do things for yourself, even temporarily, is often emotionally draining. I remember coming home after a car accident with my arm in a sling. It was upsetting when I couldn’t figure out how to open and pour a glass of milk for myself. The next few days did not go well in terms of self care.

One way to help people return home successfully is Occupational Therapy (OT). A study in Medical Care Research and Review by Rogers, et al.¹ used Medicare claims and cost data to look at the association between hospital spending for 19 spending areas (including OT) and 30-day admission rates for 3 conditions: Heart Failure, Pneumonia, and Acute MI. . They evaluated 2,791 hospitals for the heart failure analysis; 2,818 hospitals for the pneumonia analysis; and 1,595 hospitals for the acute MI analysis The findings:

“Occupational therapy was the only spending category where additional spending has a statistically significant association with lower readmission rates.”

OTs ask and address a key question:

Can the individual be safely discharged into her or his environment?

OTs assess the individual’s ability to perform activities of daily living (ADLs), environment, and the specific tasks the individual needs to be able to do. They analyze how any problems intersect and then create strategies to improve function, safety and independence. Whether it’s helping the patient gain strength or re-master a task, modifying their environment by installing grab bars or lowering where cabinet items are stored, or training family caregivers -- these are critical factors for success and for quality of life.

The study found these 6 OT interventions can improve transitions to home:²

Train family caregivers. This is definitely underutilized and can start during the hospital stay. Caregivers need a better understanding of their loved one’s health condition, as well as skills training.
Determine if patients can safely live independently, or if they need rehab or nursing care.
Address existing disabilities with assistive devices.
Perform home safety assessments before discharge and suggest modifications.
Assess cognition and the ability to physically manipulate things like medication containers. Provide training when necessary.
Work with physical therapists to increase the intensity of in-patient rehab.

OTs can play a vital role in transforming health care in acute and post-acute settings by looking at the factors that affect health, specificly daily habits and routines, with the goal of improving function, health literacy, independence, and the safety of patients as they return home.

This creates a better patient experience, boosting confidence and self-efficacy, while improving outcomes and ensuring patients can safely return where they most want to be: Home.

Centers for Medicare and Medicaid Services. (2012b). Report to Congress: Post Acute Care Payment Reform Demonstration (PAC–PRD).Washington, DC: U.S. Department of Health and Human Services. Retrieved from http://www.cms.gov/Research-Statistics-Data-and-Systems/Statistics-Trends-and-Reports/Reports/downloads/Flood_PACPRD_RTC_CMS_Report_Jan_2012.pdf
A. T. Rogers, G. Bai, R. A. Lavin, G. F. Anderson. Higher Hospital Spending on Occupational Therapy Is Associated With Lower Readmission Rates. Medical Care Research and Review, 2016; DOI: 10.1177/1077558716666981

Dan Ansel is co-founder and President / CEO of Private Health News and Active Daily Living: content marketing and population health platforms that build ongoing, targeted relationships with health consumers, clinicians, employees, and family caregivers – and help seniors stay active, safe and independent. He frequently speaks at national conferences and publishes articles on: Managed Medicare, Acquisition and Retention, Work / Life programs, Direct Contracting with Employers, and Behavioral Health Care. He has masters degrees in Educational Psychology and Health Care Services Administration, and is a Certified Aging-in-Place Specialist.

Tags: patient engagement, communication, personal healthcare, patient education, experience, patient
0 comments

Posted: Monday, April 01, 2019

When Your Own Health is the Best Medicine for Patients

By Geri Lynn Baumblatt & Shiv Gaglani

Clinicians and professional caregivers aren’t used to being on the receiving end of care -- and typically don’t like the vulnerability that comes with being a patient. Instead they’re often taught to be tough. They work long hours, eat on the go, and balance life and death decisions - in order to deliver care to others. In other words, the culture of medicine is to not care for yourself in as you work to care for others. It’s a zero-sum game. Every minute spent getting rest, eating well, enjoying a hobby, or exercising is a minute that’s not spent doing patient care.

What if it’s not a zero-sum game?
There's ample evidence that how doctors look, feel and behave may affect patient care. Studies show that many doctors and nurses fail to promote healthy behaviors in their patients, particularly if they themselves aren’t eating well, getting exercise and are stressed. And who isn’t stressed?

The converse is also true:
Clinicians who are healthier are more likely to talk with their patients about lifestyle choices and patients in turn may feel more comfortable receiving and following their advice.

So much of health care spending and disease burden is tied to behaviors: smoking, diet, activity, and stress. And if the ones who provide care can't make changes in their own lives, can we expect patients to make those changes?

A Johns Hopkins study found that normal weight doctors are more likely to counsel their patients about obesity and weight loss than physicians who are overweight. Today, roughly 6 in 10 doctors and nurses are overweight or obese, a level approaching that in the general population. That’s not great news, but it’s also an opportunity.

Consider the dramatic decline in smoking rates over the past 50 years. Clinician behavior helped lead the way. In the 1950s about half of physicians smoked. By the 1980s the rate was below 20%. Today its down around 3%. In the culture of healthcare, being a smoker became unacceptable, and the clinicians who quit smoking themselves knew what it took to quit and could help patients get over the hump.
So even though doctors may make lousy patients, embracing that experience might be exactly what they have to do to help their patients get over their own hurdles, vulnerabilities, and fears.
In the words of Nobel Peace Prize-winning physician Albert Schweitzer: "Example is not the main thing in influencing others. It is the only thing."

Make a promise to yourself and those you care for.
If this resonates with you, read more about The Patient Promise. Commit to your own health and creating the best version of yourself, so you can help others do the same.

Here is a youtube video link that nicely complements this article: https://www.youtube.com/watch?v=3fS3CCZwrc0

Shiv Gaglani began his MD degree at Johns Hopkins and paused to earn his MBA from Harvard in 2016. He co-developed the Patient Promise, a movement to improve the clinician-patient relationship through partnership in pursuing healthy lifestyle behaviors, and curated the Smartphone Physical, which debuted at TEDMED. He is also the co-founder and CEO of Osmosis.org, a health education platform that reaches over a million current & future clinicians, as well as their patients. @ShivGaglani @OsmosisMed

Geri Lynn Baumblatt MA, For the last 20 years, Geri has worked to help people understand health conditions and procedures, orient them to their diagnoses, make more informed decisions about their care, and partner with their care teams. She oversaw the creation of the Emmi program library, and she regularly speaks and serves on patient engagement, patient experience, health literacy, shared decision making, health design, family caregiving, and heath communication panels for organizations like AHRQ, the Brookings Institute, Stanford Medicine X, and the Center for Plain Language. She serves on the editorial board for the Journal of Patient Experience, is on the board of the Society for Participatory Medicine, and published a chapter in Transformative Healthcare Practice through Patient Engagement (IGI Global). She currently consults on patient engagement, family caregiving, and health communication. Follow her on Twitter @GeriLynn

Tags: personal healthcare, expectations, experience, patient
0 comments

Posted: Wednesday, January 17, 2018

Time For Your Social Network’s Colonoscopy: Helping people take action and gleaning new insights.

By By Geri Lynn Baumblatt & Shai Levi

Shai Levi

Preventive medicine is a great way to prevent and treat problems early. But there’s a problem: while clinicians recommend flu shots and screening colonoscopies and insurers often pay for them, participation rates are low.

Of course, many people don’t take part because they don’t see themselves as patients. After all, they’re generally healthy -- so why act? Behavioral-science attacks this by trying to understand and influence people’s decision-making processes:

Are people aware of the risk?
Do they understand the guidelines regarding who should get screened?
And do they have any sense of urgency to take action now?

Clinicians are in the role of medical expert. Their recommendations are influential, but it’s only part of an individual’s decision-making process. What about:

Pain or discomfort?
Time lost at work?
And a colonoscopy is an embarrassing ordeal, right?

People don’t usually think of clinicians as experts in these topics and look to their peers. And their peers are only a click away.

A Social Network Story
At age 63, David Ron was diagnosed with colorectal cancer. Sadly, it took his life 3 years later. David created a one minute video that posted to Facebook when he passed away. In it, he talks about why he postponed screening for 13 years. He felt healthy and thought his risk for colon cancer was remote. So he didn’t see the point. Then symptoms appeared, and it was too late. He encourages people to get screened and avoid his fate.

The video (which can be viewed here) went viral. In Israel, it was adopted by organizations fighting cancer; they created Arabic, Russian and French subtitles and boosted it across Facebook. It’s been seen by over 400,000 people in the past year. Many younger people asked their parents if they’d been screened and nudged them to go. It’s hard to assess the impact on actual screenings, but initial measures showed that at least 1% of people who saw the video were motivated to get screened. And it contributed to the larger task of normalizing the conversation.

A personal story is always compelling, but most people don’t talk about their colonoscopy or stool test over drinks or dinner. However, on social networks people are more comfortable posting, commenting, “liking” and sharing about uncomfortable or controversial topics. They vocalize their opinions, get feedback from their peers and friends, and influence other people’s minds.

So, in a world where people don’t get to spend much time with their doctor and where clinician recommendations can be seen as checking a “good patient” box -- or may even be suspect as unsafe (think vaccines), people turn not just to Dr. Google, but less consciously to the their social networks. They learn if others are getting the flu shot this year, or getting colonoscopies or mammograms at age 50. They may not go online looking for this, so much as absorb it in the chatter and conversations.

Turns out, this is a big deal. Because if you come to believe an action is thought of as standard or normal in our culture (a social norm) and you believe your peers and people you respect think you should engage in a behavior (subjective norms) those both play a critical role in your decision to take action. Yep, you’re more likely to do what your friends and peers are doing. And social networks are now a major place where people get those insights.

Insights when AI meets Social Media
A network like Facebook is a good source of data. Every like, share comment, video view, and click is aggregated and segmented. Artificial Intelligence or “AI” can sift through the data and identify patterns and provide insights.

For example, the African American population has a higher risk for colon cancer and should get screened earlier, at age of 45. Yet, screening rates are low. To understand why, 30 different interventions were used to educate people about colon cancer screening and collect data on Facebook. Some were short videos of a local doctor talking about: risk of colon cancer, pros of colonoscopy, the prep, sedation, time off work, costs, etc. These were delivered to people over 45 in a geographical area (250K people fit criteria). The AI picked up a pattern revealing that young African American males in the 45-50 age range responded especially well to messages about sedation during colonoscopy and open access, which reduces time off work.

How can this help you?

Help create the norms
Anyone working in a hospital or clinic can be both a professional and a peer. Want to normalize advanced directives or flu shots? Have anyone on staff who’s gotten the vaccine or done their directives wear a button or badge that says they got or did theirs.
Consider group appointments
Conversations from peers can help normalize, reassure, and encourage others in the group to take action.

Consider how to use social networks as part of your patient engagement strategy.
Do you have a Facebook page, Twitter chats, or other social media presence? The combo of AI and social networks can lead to important insights on what people are saying and what messages resonate with various groups.

Shai Levi is a Co-founder and VP of product at Medorion in Tel-Aviv. Shai is helping to develop an AI-driven platform that enables population-health teams to effectively activate large populations without being experts in behavioral science or expert marketers. Previously he worked at Allscripts leading their population health analytics R&D. @ShaiLevi1980

Geri Lynn Baumblatt For the last 20 years, Geri has worked to help people understand health conditions and procedures, orient them to their diagnoses, make more informed decisions about their care, and partner with their care teams. She oversaw the creation of the Emmi program library, and she regularly speaks and serves on patient engagement, patient experience, health literacy, shared decision making, health design, family caregiving, and heath communication panels for organizations like AHRQ, the Brookings Institute, Stanford Medicine X, and the Center for Plain Language. She serves on the editorial board for the Journal of Patient Experience, is on the board of the Society for Participatory Medicine, and published a chapter in Transformative Healthcare Practice through Patient Engagement (IGI Global). She currently consults on patient engagement, family caregiving, and health communication. Follow her on Twitter @GeriLynn

Tags: patient engagement, communication, personal healthcare, technology, experience, healthcare, listening, patient
0 comments

Posted: Tuesday, August 22, 2017

Helping Patients Voice What Matters to Them: Decisions are About More Than Information

By Geri Lynn Baumblatt and Victoria Baskett

Victoria Baskett

“What do you want your quality of life to be like?”
It was a question Victoria never expected to hear from a surgeon, before engaging in a dialogue about his recommended treatment plan. In that moment, she was in control. In a vulnerable situation, she had the opportunity to be the author of her own story.

Victoria’s Story
Just a month before this conversation, I’d been rapidly intubated while still awake to secure my airway, which was closing due to an infection called Ludwig’s Angina. Maybe it was genetics, maybe it was the intubation, or both, but a tremendous amounts of scar tissue formed on my vocal cords. This left my voice sounding raspy -- like I was a chain smoker or always sick.

The recommended course of treatment was 6 months of speech and vocal therapy, followed by surgery if my voice hadn’t improved. Six months of vocal and speech therapy passed and surgery was still on the table.

My physician laid out both options for me and explained the pros and cons of each. For me, the recent memory of being intubated while awake was still fresh my mind. So, the idea of choosing to go through surgery, was frightening. While he explained that I’d be fully asleep for the surgery, he also took the time to understand my emotions. He saw that information alone wasn’t going to change my mind. And he respected my emotions, which created trust.

It helped to know that it wasn’t a limited or forced suggestion, but simply an option for my own personal quality of life. His opinion wasn't interjected, or I didn’t feel like it was. He shared his knowledge, and I had the opportunity to share my thoughts and emotions and make a choice. I feel like people can never have too much information. Knowledge is power when making a decision about your life. That said, our experiences and emotions are important.

So, I had to answer that quality of life question. What did I want? And How did I feel? I decided it wasn’t right for me.

There’s a lot of research and articles on patient reported outcomes and personalizing care leading to overall improved outcomes. I believe that personalizing care is essential. When we switch to the paradigm of person-centered care, we give individuals the ability to decide their own destiny. When you take the time to truly develop relationships with individuals, you have the opportunity to learn what’s important to them and to personalize care to fit their dreams and aspirations.

What’s in a Voice?
Two of the most common phrases I hear from strangers when they hear my now-raspy voice:

“Are you sick?”
“Oh no, you’re losing your voice!”

So, will I ever have surgery on my vocal cords? Well that’s to be determined! For one thing, I like sounding like Nora Jones -- being able to sing like her would be even better.

For me, my voice is also a reminder that I survived an obstacle I wasn’t expected to see the other side of. But more importantly, my voice is a reminder of a surgeon who put down his pen, looked me in the eyes, considered my thoughts and emotions, and let me determine my future -- a situation and dialogue I did not know or believe I would ever experience.

A Voice Lost and Gained
The experience changed my voice both literally and figuratively. I lose my voice frequently. It used to be a deterrent for me in loud situations because I couldn’t talk to people, so I just wouldn’t go to parties or events. But I talk every day for work, I do public speaking, and I interact with people daily. It causes challenges, but Throat Coat® tea and voice exercises have helped me through those challenges. But I found my patient voice, articulating and advocating for the patient experience.

The Takeaway
Patients need information, but information alone is not enough to make tough decisions. People also need to process their emotions. Luckily, Victoria didn’t have to make a now or never decision about surgery, so her anxiety about surgery didn’t cut her off from any options. But in other situations, patients may have a one-time choice where emotions about a new diagnosis or situation may overwhelm them. Research suggests clinicians can help address patient stress by discussing treatment options only after the address emotions. Otherwise, patients may not be equipped to move from learning about their condition to making a decision or taking behaviors to manage it.¹

Nunes, et al. A diagnosis of chronic kidney disease: Despite fears, patients want to know early. Clin Nephrol. 2016 Aug; 86(2): 78–86. Published online 2016 Jun 27. doi: 10.5414/CN108831

Victoria Baskett - Victoria Baskett is the Director of Patient Experience at Wayne UNC Health Care in Goldsboro, North Carolina. She is also the Founder and President of the Victoria Baskett Patient Safety Foundation that works to “Improve patient safety by educating patients and families on the importance of finding their voices.” Misdiagnosis, delayed diagnosis, and emergency surgery all led Victoria towards her mission to transform healthcare through patient and family advocacy and safety. Along with her career and non-profit, she currently serves on the North Carolina Quality Center Patient and Family Advisory Council and Board of Trustees, the Patient Safety Movement Handoff Communications Workgroup, and The Beryl Institute’s Global Patient and Family Advisory Council. @vbpatientsafety
Victoria Baskett Patient Safety Foundation (facebook)

Tags: communication, personal healthcare, shared decision making, empathy, engagement, experience, listening, patient
0 comments

Posted: Wednesday, June 14, 2017

When Side Effects Get in the Way

By By Geri Lynn Baumblatt & Mia DeFino

Mia DeFino

Patients, clinicians, and healthcare organizations all want people to feel better so they can live their lives to the fullest. Unfortunately, the side effects of treatment can get in the way.

Mia’s Story: 5 meds, lots of side Effects
When first diagnosed with complex regional pain syndrome (CRPS) Mia’s physiatrist prescribed five medications. Not surprisingly, it was confusing which medication was supposed to help with what symptoms. By the time Mia came back the following week she was more miserable: agitated and unable to sleep, she had a rash on her face, and was sick to her stomach.

Turns out, she was sensitive to a lot of medications. Although she wanted to be a “good” patient, she couldn’t keep taking the meds. But her doctor was hesitant to make any changes and didn’t offer alternatives. Mia left feeling scared, frustrated and like the side effects she experienced weren’t being taken seriously.

Fast forward 3 years:
Mia was diagnosed with chronic migraines. She got relief from medication, yet it also made her dizzy, nauseous, and tired. This time the side effects conversation was different. Her neurologist worked with her through many rounds of medications and figured out if she took them as needed just on really bad days it helped her avoid the side effects, while still providing pain relief.

Geri’s story: More than a nuisance
As a family caregiver, Geri had a similar experience when medications her dad was on in the last years of his life caused his skin to thin and itch.The itching drove him crazy and kept him and those taking care of him from getting decent sleep. As a family caregiver, it was frightening to scratch his back, hoping to give him relief but not tear his fragile skin. When the family brought up the itching with his team, it was discussed as more of a nuisance -- the cost of treating his conditions.

Side effects are challenging, especially when patients take more than one medication. But even with a single medication one study that looked at statin side effects, found that 87% of patients reported telling their physician about side effects, and unfortunately physicians often rejected a possible connection to the medication. What would you do? Keep taking the medication ...or become “non-adherent”?

Changing the Conversation
It doesn’t take much to change the tone of the conversation and affirm a symptom may be due to a medication and that it’s a real issue. Even when complaints don’t fit into documented side effects, if we want people to engage in their plan of care, working this out can make all the difference to their peace of mind, quality of life (QOL), and participation. Letting people know you’ll work with them to find the right treatment where their QOL is improved builds trust.

Patients can also report side effects to the FDA on MedWatch. This can also help people know they’re contributing to a better understanding of side effects for everyone.

People want to feel better and it’s hard when treatment makes them feel worse or causes a new problem. People don’t like to challenge their care team or seem like complainers, so by the time they tell you about a side effect, it’s probably really bothering them.

Mia’s story: another 3 years later
Mia found that changes to her diet and lifestyle could help minimize the number of medications she needs to take. At Mia’s first appointment with her new primary care physician, one of the first things they talked about very directly is: Side effects. As Mia explains: I shouldn’t have to experience more symptoms to feel “better.”

Mia DeFino, M.S. Mia has personal experience with chronic diseases and managing her health with multiple healthcare providers, recognizing the need for translating complex ideas in medicine and healthcare for multiple audiences. She supports people dealing with complex chronic diseases through finding physicians and resources in their area. She’s an independent medical and science writer in Chicago www.miadefino.com. @mia_defino
Tags: communication, personal healthcare, family caregiver, empathy, pain management, patient education, experience, healthcare
0 comments

Posted: Monday, March 20, 2017

Empowering Patients with a Common Language

By By Geri Lynn Baumblatt & Liz Salmi

Just one week after her 29th birthday Liz Salmi suffered a grand mal seizure and was

rushed to the ER. A CT scan of her brain showed a large mass, and after a nine-hour brain surgery she was diagnosed with a gemistocytic astrocytoma -- a slow growing, but malignant brain tumor with a high rate of recurrence.

And recur it did.

Six months after Salmi’s first surgery her tumor grew back sending her into a whirlwind of treatments over the next two years, including a second brain surgery, struggles with seizures, a rigorous schedule of physical and occupational therapy, and 24 months of chemotherapy.

Fortunately, Salmi received excellent care through her neuro-oncology nurse practitioner.

“I used to refer to her as ‘Super Awesome Nurse’ because she handled my nausea, headaches, and constipation -- all the side effects of treatment,” remembered Salmi. “She would field my daily calls and emails, tweaking and adjusting medications or suggesting simple life hacks to help me through what I was feeling.”

But Salmi never knew the kind of care she was receiving had a name until five years after she completed treatment and started working for a healthcare nonprofit advocating for access to palliative care for all people facing serious illness.

“After I took the job it took a few months for me to realize I am a person who received palliative care,” said Salmi. “At the time, I assumed the care was the result of me being lucky enough to have been paired with an amazing NP (which could still be true); but now I know the name for it is palliative care.”

Why did Super Awesome Nurse never tell Liz she was receiving palliative care? We asked her!

“While I, as the healthcare provider, may have viewed much of the care that was being rendered as palliative in nature, not all patients are ready or willing to consider that most types of brain tumor care is palliative,” said Mady Stovall, NP, former neuro-oncology nurse practitioner and current PhD student at Oregon Health and Science University.
Avoiding the term “palliative” initially is understandable. After all, there’s a lot of confusion between palliative care and hospice. And no one wants to cause panic that a condition is more serious or has suddenly become more serious.

“The perception in cancer care is that palliative care is often (and inappropriately) equated with hospice care,” explained Stovall. “Sadly, this misconception prevents many patients, families, and even healthcare providers from being able to capitalize on the expertise and resources of palliative care providers and programs. “

However, if Salmi had changed health systems or had to find a new provider, she would not have had the words to translate the care provided by this “super awesome” nurse to make sure it continued or was re-initiated as needed. She didn’t have the language to ask for that care and advocate for herself.

“Having coordinated palliative care was crucial to my quality of life because my brain tumor was causing a lot of seizure activity,” explained Salmi. “I tried seven different anti-epileptic drugs (AEDs) over five years to finally land at the right combination of medication that worked for me. Seizures are scary and make you feel as if you don’t have control over your own body. That’s why palliative care is essential; these providers listen to your concerns and fears and make sure your medical as well as emotional needs are addressed.”

Giving People Language for Self-Advocacy
While we shouldn’t overwhelm patients with clinical language, helping them understand what things like palliative care ARE and ARE NOT improves their ability to advocate for themselves.
In fact, it was only after her recurrence that Salmi learned about oncology social workers. Had she known about this role, she would have asked for it when going through surgery and treatment for her initial tumor.
Not everyone is going to become an expert patient in health communications, but educating patients and families as they get and make decisions about care can help them tell us what is most important to them.

*As an additional note we are proud to announce that Liz and Geri will be part of a panel at Stanford Medicine X on advance care planning. Joining them will be palliative physician Dr. Michael Fratkin, researcher Rebecca Sudore, and MD/JD: Dr. Aretha Delight Davis.

Liz Salmi is a curious person-turned citizen scientist who turned her brain cancer diagnosis into an open source chronicle of the patient experience. Today, her blog TheLizArmy.com receives over than 30,000 visits each year. Her interests include patient-driven research, the quantified self, open source health data, and neuroscience. When she's not blogging, Liz is a patient advocate for OpenNotes on national movement that encourages health care professionals to share the notes they write with the patients they care for, with the goal of improving the quality and safety of care. @TheLizArmy

Tags: patient engagement, personal healthcare, empathy, health literacy, patient education, engagement, experience, healthcare, listening
0 comments

Posted: Thursday, August 27, 2015

Helping People Find Their Language of Recovery

Co-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
0 comments

Posted: Friday, January 30, 2015

When Patients Befriend Dr. Google

Co-author: Kerry O’Connell, a construction executive from Denver, CO

For m

any 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
0 comments

Welcome

Login