PEN Blog Archives

Patient Access: Let’s Talk Health Data #patientchat Highlights

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

Top Tweets

Health Literacy is Key


“Data can help others learn!”


First, De-Indentify and Anonymize Data


Full Chat

Is Treatment Adherence & Socioeconomic Disparities in Myeloma Creating Roadblocks to Best Care?

A Diverse Health Hub #NewsyNugget

How Can Myeloma Patients Facing Disparities Be More Proactive in Their Care?

Dr. Victoria Vardell of Huntsman Cancer Institute discusses her study where key findings reveal underserved myeloma patient populations are less likely to receive a stem cell transplant (SCT). Vardell encourages patients to ask questions of their providers until they have a complete understanding so they can make the most informed decisions in their myeloma care. Watch the complete interview below.

Myeloma Treatment: Black patients less likely to receive SCT

ASH 2019 Study: Here

Speak Up: Patients should ask questions until they understand in order to make more informed treatment decisions

Does Treatment Adherence in Myeloma Impact Outcomes?

Myeloma expert Dr. Sikander Ailawadhi of Mayo Clinic breaks down the importance of treatment adherence and disease management in multiple myeloma in order to get the maximum benefit. In Dr. Ailawadhi’s own words: “In myeloma it has been shown again and again, if you use the right treatment for the right duration and you get a deep response, you are more likely to do better.” Watch the complete interview below.

Myeloma Treatment: staying on regimen long enough for deepest response is important

Treatment Adherence: a known issue in multiple myeloma and many cancers

Treatment Duration: staying on the right treatment for full duration coupled with deep response is key


Diverse Health Hub and the Patient Empowerment Network will partner to produce ongoing educational programs in 2020. 

Let’s Start Healthy Habits to Reduce Your Cancer Risk

Living a healthy lifestyle can be very helpful in reducing your risk of contracting various diseases, including heart diseases, osteoporosis, stroke, and diabetes.  You might not believe it, but just by eating healthy, exercising regularly, and incorporating healthy eating habits, you can reduce the risk of one of the most dreadful diseases, cancer.

Nowadays, cancer has become quite common. Studies have shown that our lifestyle choices play a vital role in reducing your risk for this dreadful disease. Here are some simple tips that can be very helpful in cancer risk reduction.

Cancer Risk Reduction:

1. Maintain a Healthy Weight

We all understand the importance of maintaining a healthy weight. Still, many of us fail to maintain our body weight. If you are overweight, the first and foremost thing that you need to do is avoid adding any more extra kilos. Once you start keeping a check on your weight, it would automatically help in improving your health. Once you achieve this goal, put some extra effort and try to reduce your weight by a few pounds.

Tips for weight loss:

  • Do regular exercise or indulge yourself in physical activity.
  • Focus more on eating fresh fruits and vegetables.
  • Avoid taking fried food, canned food, and sweetened aerated drinks

For faster results, you can even take phentermine. Phentermine is found to be very useful in weight loss when accompanied by regular physical activity and a healthy diet. The best part of this supplement is the availability of “online phentermine prescription

2. Don’t use tobacco

We all are well aware of the ill-effects of smoking. Smoking may result in various kinds of cancer like lung cancer, bladder cancer, cervix cancer, mouth cancer, pancreas cancer, larynx cancer, kidney, and bladder cancer. It’s not only active smokers that have higher chances of getting cancer. Passive smokers, too, have higher chances of getting cancer of lungs.

Hence, avoiding tobacco products or quitting smoking completely is very important if you want to reduce your risk of cancer. Quitting such addictions is not easy. But with determination, strong will power, and support of your family and loved ones, you will be able to quit it. If you want, you can seek help from professionals.

3. Protect yourself from the sun

We all know the importance of sunlight for sustaining life on earth. But, too much exposure to the sunlight may cause skin cancer. Tips to protect yourself from skin cancer caused due to sunlight:

Sun rays are strongest between morning 10 to evening 4. So avoid going out at this time of the day. Try to keep yourself in the shade when you are outside. Wearing hats, glares, and applying sunscreen lotion can be very helpful. Avoid using sun lamps and tanning beds.

4. Cancers that should be tested for regularly:

Going for regular check-ups is very important if you want to reduce your risk of cancer. Numerous tests help in detecting cancer at an early stage. Early the stage of detection higher is the chances of survival. In the case of breast and cervical cancer, women are recommended to go for cancer screening tests at an interval of six months. These simple screening could save thousands of women’s lives every year.

Cancers for which screening test should be taken frequently:

  1. Breast cancer
  2. Cervical cancer
  3. Lung cancer

5. Avoid alcohol and if you take it, take it in moderation

Drinking alcohol increases the chances of getting cancer. Taking a drink or two occasionally might not be that harmful, but people who drink regularly that too in quite large quantities should try to overcome this addiction. If you want to quit drinking, you can start by avoiding parties and gatherings which are centered around alcohol. Try taking non-alcoholic drinks at parties. If needed, consult a health-care professional. Avoiding alcohol would not only save your liver but would also reduce the chances of getting liver cancer.

6. Avoid risky behaviors

Another essential health tip that would help you in reducing your risk of cancer is to avoid getting indulge in dangerous habits.

Practice safe sex:

Sexually transmitted diseases are found to be a major cause for various types of cancer, including cancer of lung, anus, and liver. Always follow healthy sexual habits. Try to have a monogamous relationship. Whenever possible, talk to your kids about the importance of safe sex. If possible, get your kids vaccinated against HPV at the right age.

Avoid sharing needles:

Sharing needles is another reason for the transmission of HIV. Besides this, sharing needles with a person having Hepatitis C and Hepatitis B would result in the transfer of these diseases, which may further increase the chances of having liver cancer. If you are looking forward to getting rid of drug addiction, taking help from a professional could be very beneficial.

Cancer is a very dangerous disease. It not only affects the patient, but it hampers the life of the people surrounding who are connected with the patient. If, by following some healthy habits, we can reduce the risk of these diseases, believe me, it is worth every effort. Eat healthily and live a healthy lifestyle and reduce your risk of the health monster named Cancer from entering into your life.

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.

Patient Profile: Perseverance and Positive Thinking Helped This Young Mother

Cancer is a stealthy assailant. Symptoms can be nonexistent or masquerade as some other ailment. When a medical professional utters the “C” word, the shock can be intense.

“I had no idea,” said Lindsay Hutchings of the softball-sized tumor that had been growing in her chest behind her breastbone. “I just knew I didn’t feel right.”

Lindsay was 34 at the time of her diagnosis. A mother of two young children, she never suspected cancer when she started feeling unwell. It was October. Time for picking Halloween costumes and the season when colds spread like wildfire through schools.  A mom with young kids feeling fatigued and achy was nothing to be alarmed about.

Lindsay went to a walk-in clinic. When she didn’t improve, she went to her primary care doctor. She was given antibiotics. She was tested for the flu and then mono. Allergies were blamed and antihistamines suggested. Every week she was back in either the walk-in clinic or her primary care doctor’s office.  Until one morning she woke up with a swollen neck and jaw.  She knew this was not just a stubborn cold. She knew it wasn’t allergies.

“This time I was diagnosed with a sinus infection and referred to an Ear, Nose & Throat (ENT) physician. It was frustrating because I knew it wasn’t a sinus infection. I just didn’t have any idea what it could be.”

By this point, Lindsay’s husband, Jake, was going to appointments with her in hopes he might think of some question or detail she had missed. The ENT doctor examined Lindsay and listened to the path that had brought her and her husband to see him. He scoped Lindsay’s sinuses and found nothing.

Then he ordered a CAT scan and posed the possibility that Lindsay’s symptoms might not be related to a virus, allergy, or superbug. It might be cancer.

She was told to expect to wait three weeks for the results of her CAT scan because of the Christmas and New Year’s holidays, but the ENT called her after a few days with the results.  He suspected lymphoma and referred her to an oncologist.

Lindsay started the New Year off by having two biopsies and a PET scan to confirm what the ENT had suspected.  Four months after she first began feeling off, Lindsay had an answer. It was Stage IIB Hodgkin Lymphoma.

About Hodgkin Lymphoma

Cancers that start in white blood cells—also called lymphocytes–are categorized as lymphomas. The two main types of lymphomas are Non-Hodgkin Lymphoma and Hodgkin Lymphoma. Hodgkin Lymphoma (HL) can start in any lymphoid tissue in the body, such as the spleen, bone marrow, thymus, adenoids or tonsils. However, it most often starts in lymph nodes in the upper part of the body. Lymph nodes are bean-sized collections of lymphocytes and other immune system cells and are located throughout the body.

The causes and triggers for HL are unknown. Children and adults can develop Hodgkin Lymphoma. The average age at the time of diagnosis is 39. Although there is a higher rate of lymphomas in people with immune disorders, there is usually no known risk factor or cause for people diagnosed with HL.

There are four subtypes of classic HL and a rarer form of HL called nodular lymphocyte-predominant Hodgkin lymphoma (NLPHL). Treatment for the disease varies depending on what type the patient has, what stage the disease is in (I, II, III, or IV), and whether certain other symptoms are present (called B symptoms).

Cancer’s Emotional Side Effects: Shock, Optimism & Guilt

From the first mention of lymphoma by the ENT physician Lindsay began researching the disease online. She went to her first post-diagnosis oncology appointment armed with questions. Her oncologist patiently answered her questions and laid out a treatment plan he felt confident was the right one. He explained the survival rates were high and the rates of recurrence of HL were low. He assured Lindsay and Jake her prognosis was good.

“I was in shock. I had no idea what I was doing but he was responsive and reassuring. I would call or email my oncologist between appointments with questions and he always responded. It really helped me be positive and more confident,” Lindsay explained.

She needed that positive confidence to help with the first challenge that followed on the heels or her diagnosis. She and Jake had to sit down with their daughters—who were just four and seven—to explain their mommy had cancer and what that meant for their family.

Lindsay’s mother had passed away from lung cancer just two years prior.  It was hard for seven-year-old Delaney to understand that this cancer was different from her grandmother’s.  She became anxious after the effects of treatment began taking their toll that Lindsay might die just as her grandmother had.

Her younger daughter had a hard time distinguishing the kind of sick her mommy was from the everyday illnesses she and her friends might have.

And of course, once treatment began, there was a lot Lindsay couldn’t do for her children anymore. Some days she couldn’t get out of bed. Often Lindsay was unable to take them to school or help with homework. She stopped volunteering at their schools. A low point for their family came early in Lindsey’s treatment when Delaney came home from school sick Lindsay had to avoid being near her. Meanwhile, her husband worked from home as much as he could or took time off to care for Lindsay and their daughters.

Lindsay admits, “I still feel guilt for the burden I put on my family.”

The Cancer Journey Continues

Lindsay’s cancer was treated with chemotherapy and radiation. There were side effects, of course:  exhaustion, chemobrain, nausea, constipation, blood clots.  She had to get daily shots of blood thinners in the doctor’s office, which brought other risks and complications. There were moments of panic when it seemed the tumor had stopped responding and additional biopsies followed.  But in the end, nearly a year after Lindsay first began experiencing symptoms, she was declared cancer-free.

There is a sense of victory from beating cancer. But like many other cancer survivors, Lindsay can’t say her cancer journey has truly concluded.

“At this point I am cancer-free, but I’m paranoid. It [the tumor] got so big without me knowing! I feel like some part of me will always worry.”

Ten to 30 percent of HL patients experience recurrence of the disease, with recurrence being lowest for those who are treated in the early stages of the disease. However, rates of developing a second cancer are higher for HL survivors than the general public regardless of whether the lymphoma returns.

Lindsay will have quarterly follow-up visits and two scans this year to screen for recurrence. As long as her results remain normal, she can scale back to annual screenings the following year. However, because she’s now at higher risks for other medical issues, she needs annual screenings by a cardiologist and pulmonologist. She will have annual mammograms now, instead of waiting until age 40 or 45. She has a roster of doctors at a time of life when many of her peers are in peak health.

The upside, Lindsay says, is that if any of her friends or family ever need a recommendation for a specialist in town, she has her list ready!

In addition to the health concerns she will carry, Lindsay also continues to deal with fatigue. Fortunately, while undergoing treatment Lindsay was able to connect with, Brittany, a two-time survivor of Hodgkin Lymphoma.  Brittany used to teach at Delaney’s school and when she heard about Lindsay’s diagnosis, she tracked down her phone number from a friend because she knew from experience how helpful it is to hear perspective and encouragement from someone who has been there before.

“When I went to my appointments, I was usually the youngest person in the office by decades,” Lindsay explained. Talking to someone closer to her own age has helped.

In addition to finding a connection with a fellow survivor, Lindsay is also grateful for the support she and her family received from friends and family in their community. During her treatment, Jake and Lindsay’s family helped as they could.  But there was also an outpouring of support from friends and acquaintances who helped with meals, gift cards, and donating to a GoFundMe account for the family.

“If I could give one piece of advice,” Lindsay says, “it would be to build your community. If we didn’t have friends and family to help get us through, I don’t know what we would’ve done. You can’t be involved in your community or volunteer or even go to church when you are sick. But I am so grateful that we were involved and active before the diagnosis.”

At a time when she saw few people and did very little outside of her home, she felt buoyed by the care and concern of from relationships she’d established before her illness. So, along with the guilt and worry she may carry forward from her cancer journey, she will also carry an abiding appreciation for the value of a supportive community.

Life for the Hutchings family is gradually settling back into normalcy, with family vacations and school schedules supplanting doctors’ appointments and treatments. Lindsay can begin to enjoy her new mantle of ‘cancer survivor’ with increasing confidence. But rather than consign the experience to something that “happened” to her, she is sharing what’s she learned from the experience. She would not claim to be an expert in cancer and its treatment options. But she does advocate for the power of building relationships and positive thinking. These are lessons that can help others whether they are confronting cancer or any other life-altering ordeal.

Artificial Intelligence in Healthcare

Ready for its closeup, or not ready for primetime?

Headlines about the advent of artificial intelligence, AI, in pretty much every sector of human life or enterprise seem to be a daily occurrence. Other phrases that get thrown around in stories about AI are machine learning, deep learning, neural networks, and natural language processing.

Here’s a handy list, from the transcription company Sonix, which uses some of these AI tools to drive their service:

  • Artificial Intelligence (AI) –the broad discipline of creating intelligent machines
  • Machine Learning (ML) –refers to systems that can learn from experience
  • Deep Learning (DL) –refers to systems that learn from experience on large data sets
  • Artificial Neural Networks (ANN) –refers to models of human neural networks that are designed to help computers learn
  • Natural Language Processing (NLP) –refers to systems that can understand language
  • Automated Speech Recognition (ASR) –refers to the use of computer hardware and software-based techniques to identify and process human voice

A lot of the stories I see about AI are focused on how it might impact, improve, or otherwise influence healthcare. Depending on who you listen to, it sounds like AI is already diagnosing cancer successfully – here are two pieces, from science savvy sources, on how that’s working, “AI is already changing how cancer is diagnosed” from The Next Web, and “AI matches humans at diagnosing brain cancer from tumour biopsy images” from New Scientist, for your reading pleasure.

As aspirational as the idea of AI in healthcare is, and despite the fact that it’s showing some promise in cancer diagnosis, I’m not thinking that it’s time for the champagne, balloons, and glitter … yet.

One of the biggest barriers to AI is the same barrier everyone – on both sides of the stethoscope, and all the way up to the c-suite – in healthcare confronts daily: data access and liquidity. Data fragmentation is rife across the entire healthcare landscape, with EHR systems that don’t talk to each other well (if at all), and insurers unwilling to open their datasets to anyone under cover of “trade secrets.” In “The ‘inconvenient truth’ about AI in healthcare” in the journal Nature, the authors (British, so this is not just an American problem) point out that, “Simply adding AI applications to a fragmented system will not create sustainable change.” Healthcare systems may be drowning in data (they are), but tools to parse all those data lakes into actionable insights aren’t able to bust the dams holding in that data.

Access is one barrier. Another is the ethics of using AI in healthcare. The American Medical Association’s Journal of Ethics devoted an entire edition to that issue in February 2019, with AMA J Ethics editor Michael J. Rigby calling for deeper discussions about preserving patient preferences, privacy, and safety before implementing AI technology widely in healthcare settings. He particularly notes the impact AI could have in medical education, with medical education being shifted from a focus on absorbing and recalling medical knowledge to a focus on training students to interact with and manage AI-driven machines; this shifting would also require attention to the ethical and clinical complexities that arise when humans interact with machines in medical settings.

AI, across all uses, but particularly in healthcare, has to take a long, hard look at how bias can spread algorithmically, once it’s baked into the code that’s running the machines. There are data scientists doing bias detective work, but will the detectives be able to prevent bias, or just bust perpetrators once the biased outcomes appear?  Stay tuned on that one.

Is there an upside to AI in healthcare? Absolutely, *if* the ethical issues on privacy and error prevention, and the practical issues on data access, are addressed. AI could pave the way to fully democratizing information, both for patients and front-line clinicians. It could liberate all clinicians from data-input drudgery, or “death by a thousand clicks.” The Brookings Institution has a solid report, “Risks and remedies for artificial intelligence in health care,” as part of its AI Governance series, that breaks down the pros and cons.

Circling back to the question in the headline, is AI in healthcare ready for primetime? This person’s answer: it depends. I think that rigorous study, in the development of AI in medicine and its use in the healthcare system, is required as an ongoing feature of AI tech used in human health. Upside there? A whole new job classification: AI oversight and management.

A Year in Review: Looking Back on 2019 and Ahead to 2020 #patientchat Highlights

Last week, we hosted an #patientchat on A Year in Review: Looking Back on 2019 and Ahead to 2020. The #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets

Patients Own Their Data


Collaboration Means Everyone


Find Something You Enjoy


Full Chat

Health Care and Social Media: Importance of Facing Their Challenges

Social media has greatly influenced many aspects of our society, particularly healthcare. Through social networking sites, blogs, forums, and similar platforms, it has become easier for people to find health information and get the care they need.

But the use of social media in healthcare is not without challenges. Concerns over breaches of patient privacy, the abundance of unreliable health resources, violation of personal–professional boundaries, and many others have surfaced over the past years, which makes both the public and health professionals question the impact of social media on health care.

The Role of Social Media in Health Care

Social media is one of the most popular channels used by healthcare providers (HCPs) to communicate with their patients and promote health. In fact, 99% of hospitals in the U.S. have an active Facebook page. The use of other social networking platforms like Twitter and Instagram in healthcare is also on the rise.

Health education.

Perhaps the biggest benefit of social media in healthcare is information dissemination. It allows health institutions and organizations to share discoveries, research, health tips and recommendations, and relevant news to the people.

Patient care.

Another benefit of social media in healthcare is it helps providers build positive relationships with patients. Gone are the days when people will have to wait in line for hours to have a consultation with their doctors. Today, they can send queries or book an appointment online and get updates from their HCP. This, in turn, strengthens the trust between them and improve the patient experience.

Healthcare promotion.

83% of internet users or 93 million Americans have searched for health-related information online, ranging from mental health, disease management, immunizations, etc. Moreover, 60% of social media users trust the information shared by doctors and other health professionals. Because of this, care providers now utilize social media to promote their services.

Challenges

The online world is an open space. Everyone can upload information without verifying it, view someone else’s data, and in worst cases – steal someone else’s data. Managing social media can also be burdensome for healthcare providers who – as we know it – are some of the busiest professionals there are.

Patient data privacy.

HCPs take extreme caution in sharing information online, afraid that it patient’s privacy. To avoid this, all healthcare providers should adhere to the HIPAA Compliance which is a set of regulatory rules concerning the privacy, security, and integrity of confidential health information.

Social media management.

Healthcare professionals use social media to promote their services and provide better care to their patients. But managing social media is not easy. To reap its benefits, healthcare providers should keep their followers engaged, provide useful information, and respond to the queries of patients. All these take time, strategy, and commitment. For these reasons, many healthcare providers make use of all-in-one marketing platforms like Adrack that can automate social media campaigns, saving them time and resources.

Poor-quality information.

Information on social media circulates easily. While social media is a great channel for promoting health education, a lot of health information shared on various sites lack quality and credibility. Medical information may also be unreferenced or incomplete. It can also be changed by anyone.

Healthcare providers need to remind their patients that not all health information they see on social media is true. They should also guide them to peer-reviewed websites where all information is subject to quality control.

Concerns over professionalism.

A major risk in the use of social media in healthcare is the possibility of posting content that can damage the reputation of providers, students, and the healthcare institution as a whole. Physicians are very concerned that people might lose respect for them if they share inaccurate information or judge them if they share their personal opinion over certain topics. Many healthcare providers also fear that people might perceive them negatively through photos, comments, likes, and other social media activities. Ensuring that they are providing only relevant and appropriate information is the best way to avoid such issues and controversies.

Patient–HCP boundary.

Boundary violations can occur without the physician and the patient even knowing it. A lot of times, it’s the patients who initiate online communication by sending ‘friend requests’ to their physicians. Unknowingly, this violates boundary policies between healthcare professionals and patients. Rather than communicating on social media channels, HCPs should consider setting up a website to be used for sharing posts regarding medical events or services. This way, patients can follow updates in a more professional manner. Also, HCPs should refrain from using investigating the personal behaviors of their patients in making a clinical judgment, such as knowing whether or not they have quit smoking or are observing a healthy diet.

When used responsibly, social media can be a powerful tool to promote health education, build positive HCP-patient relationships, and improve healthcare quality.

ASH 2019: Timely Myeloma Care Makes a World of Difference; Experts Prioritize Addressing Race-Associated Risks

Diverse Health Hub and the Patient Empowerment Network will partner to produce ongoing educational programs beginning in 2020. These programs identify demographic disparities found in existing diagnostic and treatment practices for multiple myeloma. Program content and educational resources will supply actionable and meaningful material tailored to healthcare providers, patients, and patient care teams. When patients feel heard and understood by their healthcare providers, they are more likely to participate in clinical trials and advocate confidently for treatment options. Our joint goal is to empower a targeted and unique population of myeloma patients to spark life-saving conversations with their providers. Be sure to sign up for PEN’s newsletters to learn more.


Onsite at ASH 2019, Diverse Health Hub interviewed prominent myeloma researchers, including questions from our members.

Is earlier effective treatment for a deeper response keeping myeloma at bay? Yes. According to new evidence around timing of treating myeloma presented at ASH 2019, immunotherapy drug daratumumab (DARZALEX) demonstrated it could repeatedly attack marker CD38 – a game changer. Dr. Sikander Ailawadhi sheds light on these new findings: “In the past the thought was that once the patient was treated by a drug that targets one particular marker that whole pathway or that mechanism of action is gone, but there was data presented at ASH, which we are all very encouraged about. Patients who have let’s say been treated with daratumumab (DARZALEX)—so one drug affecting that pathway – when they had disease progression at some point, they were treated with a brand-new drug going in for that pathway and the patients got very good deep responses.Watch the complete interview below.

  • Myeloma Treatment: Earlier effective treatment for a deeper response to keep disease quiet
  • New Drugs: 2020 to be a big year for myeloma, drug approval buzz
  • Encouraging Data: News at ASH 2019 reveals CD38 marker can be targeted repeatedly

Are disparities shortening the lifespan of a subset of myeloma patients? Yes. Several published papers indicate that the burden of disease was higher for a subset of myeloma patients as a result of socioeconomic status, age, race, lack of resources, access, and insurance type. Dr. Ailawadhi identifies the need for programs that educate both patients and providers to mitigate underlying disparities. Watch the complete interview below.

  • Access to Care: Significant number of minority patients unaware of medical record access
  • Burden of Disease: African Americans and Hispanics get treatment later than whites; costs tend to be higher for minority patients
  • Observation: More frequently diagnosed with myeloma later stage, at a younger age
  • Need: Educate patients, educate providers. Patients need to be their own advocates and direct the conversation with their providers in order to get to the right expert care

What role does education and awareness play in the diagnosis of ethnic myeloma patient populations? Despite advances in the treatment of multiple myeloma, Dr. Ajay Kumar Nooka identifies a gap between patient education and awareness of current therapeutic options. Dr. Nooka discusses how myeloma presents in various ethnic groups, and identifies disparities in access to initial treatment for African Americans and Hispanic populations. Nooka says, “education and awareness is the biggest gap we tend to see.” Watch the complete interview below.

  • Good news: “Really good time in myeloma, more therapeutic options”
  • Need Improvement: Education and awareness gaps still need to be filled; disparities among people of color, long road to diagnosis, delays and access to drugs
  • Clinical Trials: Lack of minority awareness and participation in clinical trials contributes to treatment disparity

About Diverse Health Hub:

Diverse Health Hub is a health equity education and awareness channel producing educational content for both patients and providers in order to bridge the gaps between healthcare practices and the needs of multicultural communities.  Diverse Health Hub works directly with a diverse patient and respected provider population in multiple therapeutic areas to promote cultural competence in healthcare. The organization believes access to these diverse perspectives cultivates culturally competent communities.

Three Night Time Activities To Help Cancer Patients Fall Asleep Quickly

Battling cancer is, undoubtedly, tough. On any given day, you might find yourself feeling so sick that you can’t even get out of bed. Being relegated to bed and struggling to even fall asleep can feel utterly disheartening. Adopting some healthy habits in your sleep routine can help to ease your body and mind into sleep more quickly and easily, letting you get some much needed rest and recharge.

Why Does Cancer Alter Your Sleep?

There are a lot of side-effects that you might experience as a result of your cancer treatment. Though one of the most common side-effects is fatigue, many patients also find that they have difficulty sleeping, which only exacerbates their feeling of  fatigue and sleep-deprivation. These sleeping problems can be the result of many factors such as newly developed sleep disorders, physical triggers, and psychological triggers.

Sleep Disorders

It is incredibly common for cancer patients to experience insomnia, which refers to any number of factors that make it difficult for someone to fall asleep and/or stay asleep. People with a serious illness are at an increased risk for insomnia. In fact, while about 20% to 30% of the healthy population suffers insomnia, over half of all cancer patients have reported facing periods of insomnia.

To be clear, insomnia is not caused by cancer, but it is a precipitating issue that results from the physical and emotional stress that often accompanies a cancer diagnosis.

Other sleep disorders may also manifest, such as sleep apnea, hypersomnia, circadian rhythm disorders, parasomnia, and restless leg syndrome. All of these make it difficult for sufferers to fall asleep and sleep soundly through the night, therefore deteriorating sleep quality and causing daytime fatigue and exhaustion.

Physical Triggers

Cancer can cause a great deal of pain and discomfort, which makes it understandably difficult to fall asleep as well. Tumors and treatments alike may result in troublesome pressure in isolated spots on the body or all throughout, as well as gastrointestinal issues, breathing problems, fevers and itching, to name just a few physical symptoms. When your body is uncomfortable, it is incredibly difficult to relax and lull yourself into restful sleep.

Psychological Triggers

Additionally, cancer comes with its fair share of life changes and psychological stressors. Fear and anxiety related to your diagnosis and prognosis alone can be enough to keep you up at night.

Following your diagnosis, you might also experience career, relationship, and body image changes which cause additional stress. We understand that cancer can be a distressing experience, and many patients are at an increased risk for anxiety and depression.

If you are experiencing any troublesome side-effects, whether they are related to your sleep pattern, your physical well-being, or your mental health, it is important to consult your oncologist and other medical professionals for their advice and assistance in easing your symptoms.

How Having A Routine Makes It Easier To Fall Asleep And Sleep Well

For the sake of your health and quality of life, sleep is perhaps the most important thing you can do for yourself. A good night’s sleep can increase productivity, improve mood, and expedite the body’s natural healing processes. This is a vital part of everyone’s life, not just those who are battling illness—still, up to half of all Americans report not getting enough high-quality sleep each night.

If you are kept up by physical pain or emotional stress, implementing a bedtime routine that works to calm your mind and body in preparation for sleep might be the change that you need. Your routine does not have to be overly complicated, especially if you don’t have a whole lot of time or energy in the evening, but a few moments of intentionality before bed can work wonders for your sleep quality and relieve daytime fatigue and sleepiness.

1) Take A Bath

We all like to be warm and cozy in bed at night (hello, fuzzy blankets!) but it is actually really important for your core body temperature to be fairly cool in order to induce sleep effectively. Our bodies follow circadian rhythms which dictate when to sleep and when to wake up. At night, your body naturally cools down and begins to release melatonin and other sleep hormones. Taking a bath or warm shower before bed can have several positive benefits to your sleep, not the least of which being a reduction in your core body temperature.

It may seem counterintuitive that soaking in hot water helps to cool you down, but when you get out of the tub the water begins to evaporate from your skin, cooling your core and cuing your circadian rhythm to do its thing. Baths also improve circulation, ease aches and pains, and help you relax and disconnect before bed.

If you decide to implement a bath or shower into your bedtime routine, go ahead and make it a real treat for yourself. Even just fifteen minutes of uninterrupted relaxation time can have major benefits. Light a calming candle or turn on soothing music, allow yourself to let go of any stressful thoughts or to dos and just breathe. We recommend bathing about one to two hours before bed so that your body has enough time to fully cool down and reap all the cleansing rewards of your pre-slumber soak.

2) Stretch

Practicing some simple yoga stretches before bed can also help sooth your mind and body before bed. In fact, exercising regularly has been seen to have major benefits on sleep quality. Even if you are someone who abhors spending time in the gym or for whom running is a form of torture, you can get in touch with your body and improve your sleep with just a few gentle stretches or a basic yoga practice before bed.

Getting your body moving releases endorphins and enhances mental clarity. If you plan on participating in a workout where you break a bit more of a sweat, we recommend scheduling that earlier in the day so your body isn’t too warm or wired before bed. Stretching and breathing exercises, however, have the same positive benefits and can be done right before bed as they help to relax your mind and body.

Not only does yoga loosen up your muscles and help to relieve pain, it also encourages mindfulness and developing a trust in one’s own body. After a cancer diagnosis, it can be difficult to have faith in your body’s ability to keep you healthy. When you practice yoga, however, the process allows you to see your strength and flexibility improve over time. You will be amazed by what your body is able to do!

Getting in touch with your mind and body through a yoga practice or stretching routine has also been seen to have positive spiritual benefits for practitioners. No matter what your spiritual discipline is, taking time out of your day to clear your mind and ground your body can be enlightening and spiritually encouraging. Use the time that you are stretching to engage in prayer, meditation, or simply focus on controlling your breathing.

3) Keep A Journal 

Do you find that as soon as your head hits your pillow it begins swirling with all of your unfinished tasks and worries? You are not alone! Writing in a journal each night before bed can help to ease your mind and stave off stress and anxiety that commonly keeps you up at night.

What you decide to write is up to you. You can jot down a recount of what you did throughout the day, or make a plan for what you intend on doing the following day. Perhaps you have a mantra of aspiration phrase that encourages you? Try writing this down each night or compose a list of things that you are grateful for or proud of from each day. If you are struggling with day time fatigue, using your journal as a place to record your daily fatigue level (on a scale of 1-10) and the activities that you participated in throughout the day can be useful for figuring out your fatigue triggers and working to manage your energy efficiently.

Ultimately, having a place to clear your head and process your thoughts is a great addition to any bedtime routine. It does not have to take a whole lot of time, nor does it have to follow any sort of structure. This journal should be for you and you alone, so don’t overthink it, just get to jotting (and then get to snoozing!)

Wrapping Up 

Ultimately, changing your routine can create a sense of regularity and control, helping to ease your mind and body into sleep. Routine changes, however, are no substitute for medical care and a strong support system. So, if you are having trouble sleeping, do not hesitate to mention it to your doctor as this might be a symptom of a larger problem.

Notable News: December 2019

While 2019 is nearing its end, there are all kinds of new beginnings in cancer research. Scientists are finding new and exciting discoveries that could lead to fine-tuned cancer treatments specific to each person, each type of cancer, and each response the body has to treatment. Using tropical flowers, mitochondria, and an off switch for cells, researchers keep finding new paths to treatment for even the most difficult and deadly cancers. Of course, that doesn’t mean we need to forget about prevention; there continues to be new information about how our lifestyles could affect our cancer risk, right down to our hair color.

A trip to the hair salon might mean an increased cancer risk, reports ecowatch.com. A study by the National Institutes of Health shows that permanent hair dyes and chemical hair straighteners might put women at an increased risk for cancer. The study found that women who used permanent hair color were nine percent more likely to get breast cancer. Black women, though less likely to use hair dye, had the most notable risk. They showed a 45 percent higher risk of developing breast cancer. Women who used hair straighteners had an 18 percent higher risk of breast cancer. Frequency of use posed a problem, too. Hair products can contain more than 5,000 chemicals, including formaldehyde, which is a known carcinogen. This study’s findings aren’t enough to draw a definitive link between the hair products and breast cancer, and no warnings have been issued about using hair products, but the findings do indicate that more research needs to be done to determine whether or not there is a connection. Read more about this study here.

Wouldn’t it be great if you could just switch off a cell to prevent tumors from growing and spreading? It might be possible, reports medicalxpress.com. Researchers have discovered what could be a new cancer immunotherapy treatment for patients who haven’t responded to other types of immunotherapy. The study, done on mice, shows that many tumors display the molecule MR1, which keeps the body from fighting the cancer cells. Researchers found that when they gave the mice an antibody that blocked the MR1 cell, cancer fighting cells could come in to slow cancer growth and prevent it from spreading. With this new information, doctors would be able to screen patients to see if they have the MR1 cell, and determine if they would respond to the potential new immunotherapy. Researchers now want to apply what they’ve learned to human tumors. You can learn more about the findings here.

Another treatment-related discovery is that there might be an alarm at the molecular level that serves as an alert when cancers have become resistant to treatment, reports sciencedaily.com. Mitochondria, which are present in most cells, can sense DNA stress which can indicate when cancer cells have developed resistance to chemotherapy, researchers found. The findings could lead to new cancer treatments that would prevent chemotherapy resistance, making it more effective. See the details about this discovery here.

Also from sciencedaily.com, we’ve learned that a tropical flower might hold the answer to treating pancreatic cancer. The plant, Uvaria Grandiflora, grows in Malaysia, Indonesia, Thailand, and the Philippines, and its flower contains a chemical that researchers have used as a model to create three new molecules which they hope could treat pancreatic cancer. All three of the molecules have shown that they kill pancreatic cancer cells in a Petri dish, and while the potential drug trials are more than five years away, these molecules could become new drugs for treating pancreatic cancer that would be more effective and less toxic than current treatments. You can find more information here.

As you say goodbye to 2019, we hope you will continue to say hello to Patient Empowerment Network. We will continue to provide you the latest in cancer research news as we continue in our mission to empower patients, family members, and caregivers in innovative ways. We’re particularly proud of our Digital Sherpa program, which you can learn more about at voice.ons.org. Learn how the Sherpas are used to enhance the experience of patients and nurses as told by Regina White, RN, MS, OCN at Moffitt Cancer Center in Tampa, Florida. Check it out here.

Happy, Healthy, New Year to all!

All I Want for Christmas … Is a Better Scientific Publishing Model

Scientific publishing is broken.

That may sound like hyperbole, but it’s not – there’s a rising tide of voices, in academic and policy circles, as well as from the general public, calling for change in how science is reported professionally.

The traditional scientific publishing model – the one that’s rooted in “publish or perish” – requires that research scientists cycle through developing a scientific question, running experiments to prove or disprove that question, rigorously gathering data to support the conclusions reached in those experiments, then assembling all of it into a paper for peer review, and publication if the paper makes it through that peer review process.

None of what I just outlined is problematic. In fact, it’s how science works. Ask a question, work on getting the answer, tell the story of that answer to the scientific community and the general public. Every scientific experiment that gets all the way to publication – which is a lot of experiments, with around 2.5 million papers published annually – adds to scientific knowledge, and gives other science geeks ideas to build on in their own work.

But the scientific publishing model is broken.

In the 21st century, the idea of paying over $1,500 for an annual subscription to the American Journal of Emergency Medicine (note that if you hit that link, you’ll have to download an eye-straining Excel spreadsheet to see subscription pricing – consider yourself warned) is a little sticker-shocky for a thirty-something emergency medicine MD who grew up with the “content wants to be free” internet. But that MD’s professional society membership(s) may include journal access, with the cost of that subscription baked into the not-insignificant annual membership fees.

Content cannot be actually free – I’m a writer, so I’m a “content creator” myself. Getting paid to do the work I’m professionally trained and experienced in is a requirement for my personal sustainability. I’m not suggesting that scientific publishing companies stop charging for the services they provide. I’m asking for a more reasonable approach than the current model.

The two main contributors to the content of scientific journals – the paper authors, and the peer reviewers – provide their work virtually free of charge. That free labor, in combination with the close to 40% profit margins in scientific publishing, have created dissention in the science ranks, particularly since career advancement in scientific fields, including medicine, relies on publication credits on your CV. Add to that the fact that government money, in the form of support for universities where most of the scientific experiments that wind up as published papers is done, and it seems like publishers are minting coin off of work provided by others.

As the author of that linked Guardian story says, “It is as if the New Yorker or the Economist demanded that journalists write and edit each other’s work for free, and asked the government to foot the bill.”

Enter open access journals, which started to appear as the web emerged in the 1990s. Open access journals charge paper authors to publish their work, then make the access to the paper “open,” so anyone can read it – no paywall, sometimes a site registration is required, but no charge per article, “paywall,” to read or download. All journals – traditional and open access – have production costs, which include everything from managing the peer review process to graphic design to printing physical copies of the journal. There is no “free” in scientific publishing, someone will always be paying for it.

Open access journals opened up publication options and ability to see the science being reported. However, that pay-to-publish thing also opened up the publishing marketplace to what are called “predatory journals,” which in turn opened a seemingly bottomless can of worms, where publishers of journals identified as problematic threaten to sue those who maintain lists of suspect journals

Like I said, scientific publishing is broken. Fixing it will require some heavy lifting, and I don’t mean lifting heavy journal issues – I mean the hard work of busting open the walls, the paywalls, that prevent wide dissemination of new scientific knowledge.

Cracks in the paywalls are widening, with large universities like the University of California system telling Elsevier they weren’t paying $10 million a year to subscribe to their journals anymore. Six years ago, in 2013, Richard Van Noorden, the features editor of the journal Nature, wrote “Open access: The true cost of science publishing,” which is a comprehensive assessment of the issue that’s still relevant in 2019, and likely to remain relevant well into the next decade.

As science denialism rises across the globe, it’s critical that scientific discovery be accessible to those interested in furthering that discovery. Which means being able to read scientific papers. Science is fun. It’s also essential to our survival, and that of our small blue planet.

So, let’s fix the broken scientific publishing model. We have to figure out how to fairly compensate publishers, while also keeping the scientific method firmly embedded in the publishing process. Somehow, I don’t think 40% margins (which beat Apple’s, by the way) are necessary here. What do you think?

Questions Answered About Digital Sherpa™

After participating in a Digital Sherpa™ workshop with Cancer Support Community in Ann Arbor, MI, we sat down with a student volunteer (“Sherpa”) and a cancer patient (“Climber”) and asked about their experience.

Climber

1. What do you think are the benefits of social media and technology to people with cancer and care partners?

Personally, I think that technology is very helpful. To be able to communicate with a doctor’s office outside of work hours helps when I have a non-urgent question.  
I’m still figuring out how social media is helpful. Doctor’s are so busy that to ask for interaction in real-time would be unfair, to them and to patients. However, it is helpful to be able to communicate in real-time with other patients and caregivers who are going through the same type of issues.  

2. What do you think are the main barriers to people using technology to assist them on their cancer journey?

A main barrier from my perspective is that when someone get diagnosed with cancer, there is a sudden jump from very few doctors to too many doctors and offices. Suddenly, everyone wants to give me information, get information from me and know how I am. This is not all attainable from one place, so many of web addresses suddenly need to be found, remembered, passwords added and remembered, etc. With treatment brain fog, fatigue or age related issues, this is very difficult. 

3. What are your thoughts on working with the students today? Do you think each generation has something to learn/teach other generations? If so, what?

Working with the students was great! Their familiarity with the web and the pages was very helpful.  
We do have things to teach each other and points of contact and building communication with common ground start the process.

4. Was there anything that surprised you about today’s workshop?

How easy it was and how much information is available.

5. What is one thing (or more!) that you learned at today’s workshop?

I learned about the Registry, Healthtunes, and , although I don’t need it now, ridesharing.


Sherpa

1. Why did you volunteer with the Digital Sherpa Program?

I volunteered with the Digital Sherpa Program because I resonated with the mission of the program – to empower patients. Although patients go to health care facilities to address concerns about their own bodies, the complexities of treatment, especially cancer treatment, can pose barriers to playing an active role in their care. I think the Digital Sherpa Program is a great way to help patients access resources in their journey and connect with other people with similar experiences. I also thought the Sherpa Program was an easy way to help others, especially since I’ve grown up with technology all around me.

2. What surprised you the most about your experience today?

What surprised me the most was how the man I was paired with held onto every word I spoke and looked at me expectantly. When I talked about the resources provided by the cancer support community and how to fill out the demographic information, he listened whole-heartedly and I felt the weight of my words. It was a unique experience taking the lead and being able to give advice.

3. What are your thoughts on working with the participants today? Do you think each generation has something to learn from/teach other generations? If so, what?

I enjoyed working with the participants because I was paired with a man who was his wife’s caregiver. When he was unsure about whether to join an online support group, he turned to her. I think our generation can learn from the older generation that sometimes less is more, and it is important to keep your information secure. When I asked my participant if he wanted the website to save his password he said no because a person shouldn’t stay logged in.

4. Based on what you experienced today, what do you think are the main barriers to older people using technology to assist them on their cancer journey?

One barrier is not having a person to turn to for help or the ability to search for solutions on the internet. Typically if I have trouble with a device, I google to try to find a solution. Another barrier is it’s constantly changing – apps, software updates, etc, so they may get used to one piece of technology, and then it changes.

5. Based on what you experienced today, what do you think are the benefits of social media and technology to people with cancer and their care partners?

During my experience, I saw a more clear benefit of technology rather than social media. One woman was able to save pdfs of articles from WebMD to the home screen of her iPad, and another man was able to join the cancer support community facebook page. Also, knowing how to access online resources such as chats, and support from licensed counselors through the phone is very beneficial as well.

6. Is there anything that you learned or saw today that changed any opinions or assumptions you may have had about people living with cancer?

Working with the participants exposed an assumption I had related to people with cancer: people with cancer as very sick and having to deal with numerous medications. Although I didn’t know what medications the participants I was paired with were on, I did notice that they were all in different stages of health. Also, I learned that cancer patients express a lot of agency when deciding with resources to take advantage of. From the list from the Digital Sherpa “cheat sheet,” only a few were of interest to my participant’s wife (patient) because she already has been receiving a lot of emails.

5 Yoga Poses That Reduce Daily Stress

We all deal with stress in our own way. 

Personally, I’ve been set on a downward spiral from something as simple as a negative thought. And although I still have hard days, I can say yoga has made these stressful times far easier to manage and few and far between. 

While yoga isn’t a cure-all, it can make a tremendous impact on how you deal with stress, where you store it in your body, and how happy you are throughout the day. If you haven’t given it a serious try, I strongly suggest committing to this simple, 5 pose routine and doing it every day for the next week. It only takes about 10-15 minutes and requires no prior yoga knowledge. 

Let’s have a look…

Why does yoga help with stress? 

Most of us store stress in our neck, upper back and shoulders. Many of us also sit at desks for the majority of our days. This leads to bad posture which further exacerbates the tension in our back, neck, and shoulders. 

Yoga helps you release tension and stress in those areas, strengthen your muscles and take a moment to focus on your breath. This is doubly important if you’re already experiencing burnout and overwhelm. 

When you perform a pose like forward bend or plank, you take deep breaths that trigger a relaxation response in your body. You also strengthen your core which leads to improved posture and physiology. 

If you had to picture a depressed or stressed person, you’d probably imagine them looking down, bad posture, and breathing shallow, etc. Something as simple as better posture actually improves your body’s response to stress

These are just a few ways yoga helps to reduce stress but, I encourage you to try it yourself and report back to us.

Do you need any special equipment?

The short answer is no. If you have a carpet or a soft surface, then you really don’t need anything. 

However, there are things that can assist in your practice. 

For example, a yoga mat may help you by improving cushioning on your joints as well as giving you a stable surface to practice on. Yoga blocks and straps can help you build form and give you something to hold onto. An anti-gravity yoga swing can help you maintain balance and stability in a number of poses. And a yoga wheel can help you with more advanced positions. 

However, none of these items are required, especially when you’re starting out. We encourage you to just focus on committing to this routine, every day, for the next week and see how you feel. 

5 yoga poses to perform each day

1. Forward bend

The forward bend is one of those classic, super simple poses that make a big difference in how you feel. This is an especially great pose if you work at a desk for most of the day. When you sit at a desk, your hamstrings are always contracted, your back rounds and your posture can start slipping. 

As a result, you breathe more shallow, your shoulders get tight, and the downward spiral begins. 

The forward bend relieves the pressure that’s been exerted on your spine, lengthens your hamstrings, and gives you a minute to just breathe. 

To perform the pose, stand with your feet shoulder-width apart. Then hinge at the hips and bend forward placing your hands on the ground if you can. Draw in your belly button toward your spine to activate the stretch and feel the tension releasing down your back. 

You may notice your back cracks as the pressure releases. Hold the pose for as long as you like making sure that, if you still feel the tension in any specific areas (like your hamstrings), hold it longer until that tension begins to relax. 

It’s also okay to have your knees slightly bent if needed but work on straightening them out over time. 

2. Cat cow

This is actually two poses that work hand in hand. They’re an ideal combination for releasing tension along your entire back as well as building strength and flexibility in your spine. 

To perform the first part (cat pose), get on all fours on your yoga mat or carpet. Make sure your hands are shoulder-width apart and your legs are hip-width apart. 

From there, take a breath and then exhale as you round your back and lower your head, pointing your crown toward the ground. 

Now, as you inhale you’re going to move into the cow pose. From the cat pose, take a deep breath and move in the exact opposite way. You’re going to raise your head and point your gaze toward the ceiling as you round your belly toward the floor. 

As you’ll notice, you’re both breathing deeply throughout the pose as well as improving lower and mid-back mobility. 

You may feel a little tension in your upper back while in the cat pose. If so, focus on pushing your shoulder blades out and holding that stretch until it relaxes a bit. This can be 5 seconds or 5 minutes. 

3. Corpse pose 

At first glance, corpse pose seems intuitive. You simply lay on the floor and relax – just like you do when you’re taking a nap or going to sleep. And while it is somewhat natural, there are important distinctions. 

When performing corpse pose, it’s imperative to focus on breath and thought patterns. This is the key to relieving stress and putting in the intentional “me time” our busy lives crave. 

To perform the corpse pose, get a yoga mat or go to an area with soft carpet. 

Lay on your back with your feet shoulder-width apart and hands straight down at your sides. Lie there for a moment just letting your self breathe naturally and relax into the position. 

After a few breaths, become aware of the feeling of the ground beneath you, become aware of the sensations happening in your body, and notice the sounds and smells around you. Release all judgment and just observe. 

Now work your way from the bottom of your feet to the top of your head, releasing the tension in each area. Pay special attention to releasing tension in your back, shoulders, neck, and face muscles. Breathe deep, take your time, and relax in this pose for as long as you like. 

4. Plank pose 

Now that you’re nice and relaxed from the corpse pose, we’re going to perform a more active movement. The plank pose is incredible for building core strength and stability because it hits all of your abdominal muscles and your glutes. In fact, it works the abdominal muscles that crunches are unable to strengthen. 

Our posture affects how we feel. When you’re slumped over with a rounded back, it sends chemical messages throughout your body. 

These messages can trigger stress, lower self-esteem, and even cause issuue with sleep. By performing a few planks every day, you can fight these problems and more. The plank also gets your blood flowing which promotes stress-busting happy hormones. 

To perform the plank, get into a pushup pose on the ground. Now drop to your elbows while keeping the rest of your body elevated from the mat. Draw in your belly button to tighten your abdominal muscles and hold the pose for 30-60 seconds. Repeat this 3 times in a row giving yourself about 1 minute in between to rest. 

5. Childs pose 

This is the perfect pose to end your anti-stress yoga routine. It’s very relaxing, excellent for spinal flexibility and one where you can really focus on your breath.

To perform the child’s pose, simply kneel on your yoga mat or carpet with your legs together and sitting back on your heels. Now bend forward pulling your chest close to your thighs. Reach your hands above your head like you’re trying to grab the far wall. Feel the stretch along your spine and throughout your shoulders. 

You can hold this pose for as long as you like. It’s an excellent way to spend some time breathing, relaxing, and preparing your mind for a great day. 

Closing

When it comes to stress, yoga is the perfect way to beat the feeling and tension caused by it. By adopting yoga as part of your daily routine (it only takes a few minutes after all), you can build flexibility, improve posture, trigger happy hormones, and just feel happier more capable during the day. Give it a try today and let us know how you feel after. 

Understanding Clinical Trials: A Jargon Buster Guide

When it comes to cancer treatment you or a loved one may be considering participating in a clinical trial as a treatment option.  Clinical trials are designed to evaluate the safety and effectiveness of a treatment. They may involve researchers administering drugs, taking blood or tissue samples, or checking the progress of patients as they take a treatment according to a study’s protocol.

Learning about clinical trials can be a steep learning curve – not least because the process comes with a lot of new terms, acronyms and jargon.  To help you, I’ve put together this list of the most common terms you will find when you are researching clinical trial information. This is not an exhaustive list but it is a helpful starting point. At the end of this article you will see links to find more information.

Adverse Effects (AE)   

Also called Adverse Events, or Adverse Drug Reaction, AEs are any harmful event experienced by a person while they are having a drug or any other treatment or intervention. In clinical trials, researchers must always report adverse events, regardless of whether or not the event is suspected to be related to or caused by the drug, treatment or intervention.

Arm 

Subsection of people within a study who have a particular intervention.

Bias

Bias is an error that distorts the objectivity of a study. It can arise if a researcher doesn’t adhere to rigorous standards in designing the study, selecting the subjects, administering the treatments, analysing the data, or reporting and interpreting the study results. It can also result from circumstances beyond a researcher’s control, as when there is an uneven distribution of some characteristic between groups as a result of randomization.

Blinding

Blinding is a method of controlling for bias in a study by ensuring that those involved are unable to tell if they are in an intervention or control group so they cannot influence the results. In a single-blind study, patients do not know whether they are receiving the active drug or a placebo. In a double-blind study, neither the patients nor the persons administering the treatments know which patients are receiving the active drug. In a triple-blind study, the patients, clinicians/researchers and the persons evaluating the results do not know which treatment patients had. Whenever blinding is used, there will always be a method in which the treatment can be unblinded in the event that information is required for safety.

Comparator

When a treatment for a specific medical condition already exists, it would be unethical to do a randomized controlled trial that would require some participants to be given an ineffective substitute. In this case, new treatments are tested against the best existing treatment, (i.e. a comparator). The comparator can also be no intervention (for example, best supportive care).

Completed

A trial is considered completed when trial participants are no longer being examined or treated (i.e. no longer in follow-up); the database has been ‘locked’ and records have been archived.

Control

A group of people in a study who do not have the intervention or test being studied. Instead, they may have the standard intervention (sometimes called ‘usual care’) or a dummy intervention (placebo). The results for the control group are compared with those for a group having the intervention being tested. The aim is to check for any differences. The people in the control group should be as similar as possible to those in the intervention group, to make it as easy as possible to detect any effects due to the intervention.

Efficacy

How beneficial a treatment is under ideal conditions (for example, in a laboratory), compared with doing nothing or opting for another type of care. A drug passes efficacy trials if it is effective at the dose tested and against the illness for which it is prescribed.

Eligibility Criteria/ Inclusion and Exclusion Criteria

Eligibility criteria ensures patients enrolling in a clinical trial share similar characteristics (e.g. gender, age, medications, disease type and status) so that the results of the study are more likely due to the treatment received rather than other factors.

Follow-up

Observation over a period of time of participants enrolled in a trial to observe changes in health status.

Informed Consent

A process (by means of a written informed consent form) by which a participant voluntarily agrees to take part in a trial, having been informed of the possible benefits, risks and side effects associated with participating in the study.

Intervention

The treatment (e.g., a drug, surgical procedure, or diagnostic test) being researched. The intervention group consists of the study participants that have been randomly assigned to receive the treatment.

Investigator

A person responsible for the conduct of the clinical trial at a trial site. If a trial is conducted by a team of individuals at a trial site, the investigator is the responsible leader of the team and may be called the principal investigator (PI).

Multicentre Trial

A clinical trial conducted according to a single protocol but at more than one site, and therefore, carried out by more than one investigator.

Number needed to treat (NNT)

The average number of patients who need to receive the treatment or other intervention for one of them to get the positive outcome in the time specified.

Outcome Measures

The impact that a test, treatment, or other intervention has on a person, group or population.

Phase I, II, III and IV Studies

Once the safety of a new drug has been demonstrated in tests on animals, it goes through a multi-phase testing process to determine its safety and efficacy in treating human patients. If a drug shows success in one phase, the evaluation moves to the next phase

  • Phase 1 tests a drug on a very small number of healthy volunteers to establish overall safety, identify side effects, and determine the dose levels that are safe and tolerable for humans.
  • Phase II trials test a drug on a small number of people who have the condition the drug is designed to treat. These trials are done to establish what dose range is most effective, and to observe any safety concerns that might arise.
  • Phase III trials test a drug on a large number of people who have the condition the drug is designed to treat. Successful completion of Phase III is the point where the drug is considered ready to be marketed.
  • Phase IV trials can investigate uses of the drug for other conditions, on a broader patient base or for longer term use.

Placebo

A fake (or dummy) treatment given to patients in the control group of a clinical trial.  Placebos are indistinguishable from the actual treatment and used so that the subjects in the control group are unable to tell who is receiving the active drug or treatment. Using placebos prevents bias in judging the effects of the medical intervention being tested.

Population

A group of people with a common link, such as the same medical condition or living in the same area or sharing the same characteristics. The population for a clinical trial is all the people the test or treatment is designed to help.

Protocol

A plan or set of steps that defines how something will be done. Before carrying out a research study, for example, the research protocol sets out what question is to be answered and how information will be collected and analysed.

Randomized Controlled Trial (RCT)

A study in which a number of similar people are randomly assigned to 2 (or more) groups to test a specific drug, treatment or other intervention. One group has the intervention being tested; the other (the comparison or control group) has an alternative intervention, a placebo, or no intervention at all. Participants are assigned to different groups without taking any similarities or differences between them into account. For example, it could involve using a computer-generated random sequence. RCTs are considered the most unbiased way of assessing the outcome of an intervention because each individual has the same chance of having the intervention.

Reliability

The ability to get the same or similar result each time a study is repeated with a different population or group.

Sample

People in a study recruited from part of the study’s target population. If they are recruited in an unbiased way, the results from the sample can be generalised to the target population as a whole.

Subjects

In clinical trials, the people selected to take part are called subjects. The term applies to both those participants receiving the treatment being investigated and to those receiving a placebo or alternate treatment.

Trial Site

The location where trial-related activities are conducted.


References

The Canadian Institutes of Health Research (CIHR)

TROG Cancer Research

ICH.org

NICE

Further Resources

American Society of Clinical Oncology’s Cancer.Net trials site

National Cancer Institute (NCI) Clinical Trials lists open and closed cancer clinical trials sponsored or supported by NCI. 

ClinicalTrials.gov database of privately and publicly funded clinical studies

CenterWatch Clinical Trials Listing