Posts

Ending Isolation: Tips for Connecting & Resources for Support Empowered #patientchat Highlights

Last week, we hosted an Empowered #patientchat on Twitter titled Ending Isolation: Tips for Connecting & Resources for Support Empowered alongside NORD. The #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets

Increased Engagement Across Social Economic Boundaries


Ways to Improve Patient Access


Health Literacy Matters


Full Chat

Patient Access: Let’s Talk Health Care Technology #patientchat Highlights

Last week, we hosted an Empowered #patientchat on Twitter titled Patient Access: Let’s Talk Health Care Technology. The #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets

Increased Engagement Across Social Economic Boundaries


Ways to Improve Patient Access


Health Literacy Matters


Full Chat

Virtual #patientchat Highlights

Community Matters: MD and Patient Authored Tips to Help You Stay Involved

Last week, we hosted our first ever Virtual Empowered #patientchat. The Virtual Empowered #patientchat was a moderated 45-minute conversation conducted online via Zoom and Facebook Live along with a lively discussion on Twitter. Below you will find the highlights from the online events and highlights from the conversation on Twitter.

Virtual #patientchat Highlights

Is Telemedicine a Useful Tool?

“I was experiencing some symptoms of COVID and I made an appointment with my PCP. We went over the symptoms and I tested negative for the antibodies, but I didn’t have to go in at the time when it was crowded.” – Mel

“I have always felt that we have under-utilized telemedicine. There is so much that can be done via a telemedicine visit.” – Dr. Rochester

“One of the best things I’ve seen from telemedicine is for a lot of people with physical ability issues or anything like that, or a really bad migraine or if you have a chronic illness that fluctuates every day. What if you make an appointment in December and it comes up a couple months later and you don’t feel good that day. You can still have the access to your provider and talk through any concerns or even potentially get help for a flare or things like that.” – Alexa

At Wits’ End?

“Be kind to yourself. Extend compassion to others. Find an emotional accountability partner. Write down a list of loved ones whenever you think of them so you remind yourself to check in later.” – Honora

Coping Tools

  • Don’t just zoom. Try online games with your loved ones!
  • Schedule virtual coffee or tea
  • Join a wellness challenge!
  • Take care of yourself

Community Empathy

It is normal to feel anxiety right now. Mel recommends finding the techniques that manage it best for you like doing some daily exercise to get your vitamin D. Stay focused: it’s a marathon not a sprint.

A Timeless Call to Action

“Reach out to others. You can physically distance without sociallydistancing. Pick up the phone, call someone, do a zoom call or facetime or skype, but don’t let these trying times prevent you from staying connected with your community and even from creating a brand new community.” – Dr. Rochester


Top Tweets

Sometimes You Need to Unplug


Enhancing Digital Health Literacy


Stories Are Still Important


Full Chat

Community Check-In #patientchat Highlights

Last week, we hosted a “Community Check-In” #patientchat with Amanda Greene (@LALupusLady). The #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets

Telehealth to save the day?


Online communities won’t be canceled 


Use social media to find patients like you


Full Chat

Best Practices for Participating in a Patient Community #patientchat Highlights

Last week, we hosted an #patientchat on “Best Practices for Participating in a Patient Community” with Carly Flumer (@carlyflumer). The #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets

Dos and Don’ts


A Good Online Community


Always Somebody There


Full Chat

Cutting Through the Panic in a Pandemic

It’s been an interesting year so far, 2020. We – as a nation, as a global tribe, as a species – find ourselves on the front lines of what feels like the zombie apocalypse, or at least a documentary version of the Steven Soderbergh movie Contagion. It seems like every day brings worse news, and you could be forgiven if you thought that many national governments got caught flat-footed by the virus that’s led to a global pandemic.

Since my chosen role here on the PEN blog, and pretty much everywhere else, is as a reporter-analyst who works to break complex, sometimes scary, topics into digestible nuggets, this month I’ll highlight some of the sources and experts I rely on to keep me from Panic City in our current pandemic.

As a journalist, I learned the two-source confirmation rule, where a fact isn’t verified until two sources confirm it. I still use that rule today, but it can be challenging with the tsunami of “facts” being presented – often contradicting each other – in a fluid situation full of uncertainty. Like, say, a global pandemic.

Uncertainty is something the human brain is wired to avoid, with our most basic cognitive functions, the ones that have been in human brains since early Cro Magnon times, set to make quick decisions on threats. Slowly assessing information is most certainly not a basic human function, since that saber-toothed tiger – or microscopic virus – is coming our way. Which makes processing a flood of information about inbound threats challenging, and fact-checking both difficult, and deeply necessary.

With all that said, here’s my list of trusted sources:

  • Eric Perakslis – Eric is a former FDA Chief Scientist, now a Rubenstein Fellow at Duke University. He’s fought ebola on the ground in Africa, working with MSF. His input on cybersecurity, case surveillance, epidemic management, and common sense in all of the above is an anchor point for my understanding of what’s going on, and what might be on deck next.
  • Helen Branswell – Helen works the infectious diseases beat for STAT News. She fact checks like a pro, since she is one. STAT and Helen are reliable sources for news about COVID19.
  • Eric Topol (I guess I like guys named Eric?) – This Eric is a cardiologist, scientist, and writer who’s speed-reading the latest emerging science on COVID19, and sharing it with his take on what it means for fighting the pandemic. He shares PDFs and images of paywalled articles, which is a big bonus.
  • Marc Lipsitch – Marc is a Harvard epidemiologist who models infectious diseases for a living as director of Harvard Chan Center for Communicable Disease Dynamics (CCDD) – I use his Twitter feed as a reality check on any breaking news about coronavirus models.
  • Zeynep Tufekci – Zeynep has been on or near the front lines of social change around the world in her role as a sociologist focused on the interaction of humans and tech, and how that impacts human behavior, particularly in groups. Her book Twitter and Tear Gas: the Power and Fragility of Networked Protest is a great read, too, for while you’re cooped up in our physically-distancing times. Her take on group-think and group-behave is illuminating.
  • Charlie Warzel – a longtime information war correspondent, Charlie ran the Infowarzel channel at Buzzfeed before moving to the New York Times opinion pages, still covering the information/disinformation/misinformation pandemic that was drowning us … until an actual pandemic showed up, making that disinformation and misinformation even more deadly to human life.
  • Farzad Mostashari – an MD and health data interoperability evangelist, Farzad led national efforts at creating interoperable health data infrastructure at HHS under the Obama administration, then founded a tech company that helps primary care practices leverage their data for better patient care. Public health emergencies require ALL the data be shared – Farzad points out the gaps.
  • Snopes’ Coronavirus Collection – Snopes has been a great resource for figuring out if the latest OMG headline(s) about anything were true, false, or somewhere in between. They’ve set up a collection of resources on their site that’s a living project, with new information added as it happens.

As a bonus-round addition, here’s something just for patient communities:

This list is not exhaustive, or comprehensive. It’s my sanity clause in this challenging time – I encourage you to use it, share it, and add to it (hit me up on Twitter, my handle is @MightyCasey). The key is to find sources of scientific, factual truth, not noise.

And for those times when you just-can’t-even with inbound news, you can check out the PEN Activity Guide for a mental break.

Stay safe. Stay well. Wash your hands. And wear a mask if you go out.

Cyber Hygiene: What Is It and Why Does It Matter? #patientchat Highlights

Last week, we hosted an #patientchat on “Cyber Hygiene: What Is It and Why Does It Matter?” with Casey Quinlan (@MightyCasey). The #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets

Keep Your Online Info Safe


Physical Distancing 


Everything is Connected


Full Chat

Removing Barriers to a Successful Patient-Provider Relationship #patientchat Highlights

Last week, we hosted an #patientchat on “Removing Barriers to a Successful Patient-Provider Relationship”. The #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets

Holistic Medicine


“Equified Partnership”


Keys to a Good Patient-Provider Relationship


Full Chat

Driving Change: How Rare Disease Patients Can Get Involved #patientchat Highlights

Last week, we hosted an #patientchat on “Driving Change: How Rare Disease Patients Can Get Involved” with RDMD (@rdmd). The #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets

Equality vs. Equity


Continued Discussion


Culture Change


Full Chat

Disparities in Care: Equality vs. Equity #patientchat Highlights

Last week, we hosted an #patientchat on “Disparities in Care: Equality vs. Equity” with Diverse Health Hub (@DHealthHub). The #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets

Equality vs. Equity


Continued Discussion


Culture Change


Full Chat

What Does Patient-Centric Care Look Like For You? #patientchat Highlights

Last week, we hosted an #patientchat on “What Does Patient-Centric Care Look Like For You?” and the #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets

Focus on Patient Activism


Patient-Centric = Viewing Patients as a Whole Person


All Patients Have Different Needs


Full Chat

10 Body Signals Warning Health Problems

Most often, we don’t worry about our health until we start to experience severe symptoms. Things like headaches, stomach aches, and fatigue have become too common that many people think they’re just normal. Well, most of the time they are. And even the healthiest individuals can suffer from occasional discomfort and pain.

However, we should always be aware of what our body is trying to tell us.

Below are 10 ways our body signals that we should be more concerned with our health:

Unexplained Weight Loss

Drastic weight loss is something to be worried about, especially if you haven’t changed anything in your diet. Most often, it indicates an underlying condition.

Health problems associated with unintentional weight loss are overactive thyroid, rheumatoid arthritis, diabetes, inflammatory bowel disease, chronic obstructive pulmonary disease (COPD), depression, endocarditis, tuberculosis, and cancer. As you can see, all these are chronic illnesses that require immediate and proper treatment. If you’ve lost more than 10 pounds without exercise or diet changes, it’s time to check in with your doctor.

Stomach Pain

You can have stomach pain for many reasons. Indigestion, allergies, or some bacterial infection are among the most common causes of abdominal pain. These symptoms can be addressed by taking either prescription or over-the-counter medications. And more importantly, by practicing proper hygiene like washing hands regularly or sanitizing surfaces with disinfecting wipes before use.

However, in some cases, stomach pain signals something more serious, such as a heart attack. Other symptoms to watch out for are nausea and heartburn. Meanwhile, “crampy” abdominal pain that is accompanied by bloating and diarrhea may signal irritable bowel syndrome (IBS).

Chest Discomfort

Chest pain is a major red flag that requires immediate medical attention. It’s a common symptom of a heart attack but it could also be caused by pancreatitis, pneumonia, panic attack, and many more health problems.

If you or someone you know suffers from chest pain along with nausea, shortness of breath, pain or numbness, lightheadedness or dizziness, sudden weakness, flushing or a cold sweat, call 911 immediately.

Skin Problems

You can have a quick assessment of your overall health just by looking at your skin.

Being the largest organ in the human body, the skin can tell a lot of things about our health. For instance, a skin rash that is accompanied by fever, joint pain, or muscle pain could indicate an internal problem or an infection. Yellowing of the skin could suggest liver failure while darkening of the skin, particularly on skin folds, could be a sign of hormonal disease.

Other skin problems that signal a need to check in with your doctor are:

Wrinkles

It’s common for older adults to have these. But deep forehead wrinkles could point to atherosclerosis which is the hardening of arteries – a risk factor for heart disease.

Breakouts

Acne is a common skin problem that can happen even in healthy individuals. But how do you know that it’s more than acne? If you haven’t had acne for a long time and you suddenly experience breakouts, it’s best to consult your doctor. Sometimes, it could indicate Polycystic Ovarian Syndrome (PCOS) or hormonal disorders.

Dryness

Dry and itchy skin could be a sign of a hormonal problem, such as an overactive thyroid. Meanwhile, people with autoimmune disease may suffer from swelling and hardening of the skin.

Weakness in the Arms and Legs

This symptom is due to loss of muscle strength, which can be caused by different health problems. Weakness, which also comes in the form of weariness, tiredness, lack of energy, or fatigue could be a sign of underlying illnesses like congenital myopathies, electrolyte imbalances, malnutrition, malignant tumors, nerve impingement.

Fluctuation in Body Temperature

The normal body temperature is 98.6°F (37°C) ± 1°. It’s common to go past this reading when you have a fever. Also, minor fluctuations are normal and can be attributed to environmental factors. However, excessive fluctuations in body temperature could signal more serious conditions, such as hypothyroidism, adrenal fatigue, septicemia (a type of bacterial infection), and altered insulin activity.

Sleep Issues

Common conditions associated with sleep problems are heart failure, musculoskeletal disorders, kidney disease, and thyroid disease. Insomnia is also a common symptom of mental health disorders like general anxiety, phobias and panic attacks, bipolar disorder, depression, and schizophrenia.

Moreover, certain brain and nerve disorders like dementia and Parkinson’s disease can all cause sleeplessness.

Bathroom Problems

People with type 2 diabetes have bodies that are less efficient at breaking down food into sugar. As a defense mechanism, the body will try to eliminate the sugar by flushing it out into the urine. If you experience more frequent trips to the bathroom (and feel thirsty more often), consider undergoing a blood test to know your average blood glucose level. The sooner diabetes is diagnosed, the easier it is to reverse through proper lifestyle changes.

Chapped Lips

If you can’t live without applying lip balm, it’s your body’s way of telling you that something is wrong. Dry, chapped lips are a common cause of vitamin deficiency. Consult your doctor for some lab tests and switch to a more balanced diet to make sure you’re getting the nutrients your body needs.

Cloudy Mind

Do you feel ‘lost’ lately? Are you unable to solve simple problems or formulate a potent thought? Cognitive and physical health are intertwined. Just as cognitive problems can result in some physical symptoms, physical illness can also affect our cognitive abilities. Obesity, for example, can significantly impact one’s ability to think and reason.

Chronic health problems usually start with minor symptoms. It’s best to consult your physician for any of your health concerns.

How to Read and Understand Scientific Research #patientchat Highlights

Last week, we hosted an Empowered #patientchat on how to read and understand scientific research. The #patientchat community came together for an engaging discussion and shared their best advice and tips.

Top Tweets and Advice


Understanding Scientific Research Is Critical


Science should be accessible to all


“The whole of science is nothing more than a refinement of everyday thinking”


Full Chat

Managing the Emotions of a Chronic Illness #patientchat Highlights

Last week, we hosted an Empowered #patientchat on managing the emotions of a chronic illness. The #patientchat community came together for an engaging discussion and shared their best advice and tips.

Top Tweets and Advice


Step One: Acknowledgement


Emotions Aren’t “Negative” or “Positive”


“We all deserve the freedom to express feelings all the time”


Full Chat

Four-Legged Physicians: How Dogs Can Aid Patient Therapy

Dogs and humans have shared a special bond for over 12,000 years.  Clinical research has shown that dogs increase quality of life, finding that those living alone with a dog have a 33% decreased risk of death.  A study published by the Complementary Health Practice Review also found that pet owners are likely to have lower blood pressure, better cognitive function, and decreased anxiety than their non-pet owning counterparts. For those fighting along term or chronic illness, spending time with a dog can have broad health benefits for both the body and the mind.

Mental Health

A long term hospital stay is difficult for patients, particularly those in critical care units.  Even physicians with exceptional bedside manner can only do so much to mitigate the clinical nature of a hospital room. A study published in Critical Care shows that animal therapy can help ICU patients overcome the mental health issues associated with an extended hospital stay.  Bringing in a dog to engage with patients breaks up the monotony of the hospital, and improves mood. 74% of pet owners report improvements in mental health, showing that dogs lessen feelings of loneliness and isolation.

Dementia And Alzheimer’s

Patients in nursing homes go through many of the same problems as those battling in an ICU.  Nursing homes pose a particularly great challenge for those with dementia and Alzheimers, as unfamiliar settings and faces can cause distress.  A promising study published in the American Journal of Alzheimer’s Disease and Other Dementias shows that dementia patients enrolled in animal-assisted therapy had decreased levels of agitation and greater social interaction than a control group.  Notably, many of the patients involved in the study had owned dogs in the past.  A key part of treating dementia-type disorders is involving patients in activities that they have enjoyed over the course of their life.  For animal lovers in nursing homes, playing with a dog for even a few hours a week can have a massive impact on their quality of life.

Exercise And Physical Fitness

Most dogs are seemingly boundless, furry balls of energy – particularly high energy, social breeds such as Black German Shepherds. Walking and playing with a high energy dog is necessary for their happiness, and comes with the obvious benefit of weight loss and a decreased chance of diabetes for people as well.  The benefits of playing with a dog can be much broader than weight loss. Exercise is a vital part of physical rehabilitation, and has shown to cause remission of major depressive disorder on par with antidepressants in clinical trials.  Coupled with the effort required to keep them healthy, a dog can give a person recovering from an illness a greater sense of purpose, which helps patients mentally as well as physically.

Registering a therapy dog requires a bit of work, but is a worthwhile vocation for both dog and owner.  While medications and in-patient care are necessary for many illnesses, a visit from a dog can help make the arduous process of getting healthy a little less taxing and far more rewarding.

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