AML Whole Patient Support Archives

Cancer can unleash a whirlwind of unexpected emotions and experiences for AML patients and care partners. You are more than just a patient; more than just a treatment plan.

More resources for Acute Myeloid Leukemia (AML) from Patient Empowerment Network.

MedHelp

MedHelp is an online health community that uses technology, data science, and expertise in consumer health behavior to deliver outcomes at mass scale. They help guide people through every step of their health journey and helps them achieve the results they seek.

With MedHelp, you are able to achieve the following:

  • Connect with others just like you to get advice and share your experiences
  • Track your health condition and easily share data with doctors and caregivers
  • Learn from people who have your condition by reading articles and blogs.
  • Ask questions from doctors via a Q&A forum

HealthTunes and MusicMedicine

Imagine a world where music is prescribed as medicine – HealthTunes calls this MusicMedicine – and your music prescription is just a click away.

HealthTunes is the only publicly available online streaming audio service created to improve your physical and mental health by pairing credible medical research with active music links.

Walter Werzowa (a musician, composer, sound inventor, and music producer) founded HealthTunes after learning his son was diagnosed with a rare medical condition. After visiting numerous physicians who recommended surgical treatment, Walter and his wife, Evelyne, decided to have their son listen to music inlaid with binaural beats and isochronic tones. Physicians saw a drastic improvement in his condition and began requesting more information from Walter and Evelyne on how they accomplished such a feat.

Subsequently, Walter decided to share his knowledge of the healing power of music and created the API for HealthTunes in the hopes of assisting others who suffer from complex medical conditions.

HealthTunes’ MusicMedicine regulates the autonomic nervous system and accelerates endogenous processes. Binaural beats, which are the result of two slightly different frequencies, create a third signal in the brain. Coupled with music, binaural beats restore and balance a patient’s physiology.

The goal is to allow everyone access to credible medical research explaining the benefits of the music they listen to. Thus, HealthTunes provides all users access to medical research from knowledgeable institutions as well as music therapy all in one place.

To use HealthTunes, simply go to the website, sign up, and music therapy is at your fingertips. Therapies can be listened to anytime, anywhere internet access is available and no credit card information is necessary. All therapies were created by music composers with medical research in mind to treat specific ailments.

Chemotherapy is very important in fighting cancer but can have unpleasant side effects. HealthTunes music has been shown to relieve chemotherapy symptoms in patients both during and after undergoing treatment.

Therapy for anxiety, depression, stress, as well as numerous other ailments is offered on the HealthTunes site. Chronic pain patients recorded 30 percent less pain perception after undergoing music therapy.

Walter strives to lessen the cost of medical care; therefore, the service is free to all patients. Donations, however, are accepted and greatly appreciated.

UCLA Medical Center Nephrology Department and UCLA Center for East-West Medicine endorse HealthTunes.

HealthTunes’ wish is to help you conquer obstacles you’re faced with while providing you with music therapy you can truly benefit from.

Take the Plunge: How Swimming is Empowering Cancer Patients

People with cancer can stand to benefit from the many positive effects of indulging in swimming. It is one of the top 10 favorite physical activities according to the 2013 Recreation Survey. Swimming for fitness also grew in popularity, jumping to 2nd place behind walking according to PHIT America. It not only keeps you in a good shape but also offers many advantages empowering patients with cancer. From acquiring survival skills to enjoying the soothing effects of the water, swimming is a form of physical and recreational activity that provides immense advantages to everyone.

Swimming is An Empowering Exercise

There’s probably nothing better than swimming. Often dubbed as the perfect workout, it is a less weight-bearing form of exercise supporting your body in the water. It enhances muscle strength, improves endurance and keeps you in a good shape. In addition, research studies show that swimming has positive effects on the mental health. It improves moods, relaxes and calms the body.

For patients affected by cancer, swimming is a physical activity that offers benefits during and after treatment. Studies also show that even those with advanced stage cancer can take advantage of the gains offered by the activity. It helps combat the side effects of the disease by decreasing the intensity of symptoms such as pain, fatigue, and peripheral neuropathy. Through physical activity, people with cancer can relax relieving stress and reducing depression caused by the illness. Quality of life is, therefore, improved through physical activity such as swimming.

A Skill with A Lifetime Value

Swimming not only provides physical and mental advantages to cancer patients, it is also a skill that you can use throughout your lifetime. It equips you with the ability to judge situations in the water, find the best solutions and cope with challenges. Although over half of Americans or 56% know how to swim according to the Red Cross Society, the ability to swim is not merely judged by being able to tread or putting your head above the water. It is also the skill to find a way out of dangerous situations and preserve your life. Swimming teaches you how to stay safe in the water. Moreover, the physical activity enables you to know how to rescue others who are in trouble safely. It also trains you how to overcome any fear that you may have such as being in or near to water and even drowning.

For patients who are going through the cancer disease, swimming is a great form of exercise that offers physical and mental benefits. It helps in decreasing the uncomfortable symptoms of cancer and assists in improving overall wellbeing. Above all, it is a life skill that can save your life and that of others.

How To Cope With Cancer-Related Fatigue

We all know what it’s like to feel tired – physically, mentally and emotionally, but usually after some relaxation and a good night’s sleep, we are ready to take on the world again. When you have cancer, though, rest often isn’t enough. Fatigue caused by cancer and its treatments takes a toll on your stamina along with the emotional effects of cancer. Being diagnosed with cancer is highly stressful and we know that stress affects your state of mind, your sleep, and your energy levels too. Even after adequate sleep or rest, you still feel tired and unable to do the normal, everyday activities you did before with ease. You experience a persistent, whole-body exhaustion. You may find it hard to concentrate or to engage in your usual activities.

What is cancer-related fatigue?

Cancer-related fatigue (CRF) is increasingly recognised as one of the most common and distressing side effects of cancer and its treatments. It has a negative impact on work, social relationships, mood, and daily activities and causes significant impairment in overall quality of life.  It has been estimated that from one quarter to nearly all cancer patients experience fatigue during and after treatment. Although CRF generally improves after therapy is completed, some level of fatigue may persist for months or even years following treatment.  Studies of long-term breast cancer survivors suggest that approximately one-quarter to one-third experience persistent fatigue for up to 10 years after cancer diagnosis.

Some symptoms of cancer-related fatigue, according to the American Cancer Society are:

  • A constant feeling of tiredness that doesn’t ever go away or get better
  • Being more tired than usual before, during, or after activities
  • Feeling too tired to perform normal routine tasks
  • Feeling general weakness or lethargy
  • Lacking energy
  • Being tired even after a good night’s sleep
  • Inability to concentrate or focus
  • Inability to remember
  • Being sad, irritable or depressed
  • Easily frustrated or angered
  • Trouble sleeping/insomnia
  • Difficulty moving arms or legs

What medical help is available for cancer-related fatigue?

A lot of cancer patients do not report fatigue to their doctors because they think that nothing can be done for it. In fact, there are things that can be done to alleviate the debilitating effects of CRF.  If left untreated, fatigue may lead to depression and profoundly diminish your quality of life, so it’s important that you speak to your doctor if fatigue is an issue for you.

Before you can address CRF specifically, your doctor needs to determine if there are any underlying medical issues which may be contributing to your fatigue.  For example, if you are anaemic, you may need to take nutritional supplements like iron. Sometimes fatigue is confused with depression. It’s important, therefore, to be evaluated to distinguish between the two. You may experience one or the other, or both at once. But they are not the same. You may need treatment for depression before you can adequately deal with your fatigue.

6 Everyday Strategies To Cope With CRF

 

Making some adjustments to your everyday routines can also help you cope with CRF. Here are 6 ways to do this.

1. Make deposits in your ‘energy bank’

Don’t expect to be able to do what you could do before cancer. Know your limits and don’t expect too much of yourself. You may find it helpful to think of your energy reserves as your ‘energy bank’. Whenever you do an activity you make a withdrawal. And when you rest you make a deposit. It’s important to balance withdrawals with deposits. If you keep doing too much whenever you feel like you have energy, you’ll run out completely and not have any reserves left for the things that are important.

2. Plan your day

Planning is key when you have fatigue.  Write a ‘To Do’ list each evening so you can prioritize the things you need to do the next day.  By prioritizing in this way, you can use your energy on the activities most important to you. Spread your activities throughout the day during times when you feel best and take rest breaks in between activities.

3. Keep a fatigue diary

Keeping a fatigue diary – where you score your fatigue each day on a scale from 1 to 10, and record your activities – can help you think about patterns in your energy levels throughout the day.    This can make it easier to plan your activities for the times when you have more energy.

4. Do some regular light exercise

Although exercising may be the last thing you feel like doing, if you don’t exercise, you’re more likely to experience fatigue. In fact, a new study found that exercise and psychological interventions may be powerful tools in combatting cancer-related fatigue. Research has shown that there are many benefits to exercise. Not only does it help reduce the symptoms of fatigue, exercise encourages your body to release endorphins – often called ‘feel good hormones’. When released, endorphins can lift your mood and sense of well-being.

5. Eat healthily

When we are exhausted, we tend to gravitate towards processed, junk food which depletes our energy reserves further.  Follow a well-balanced diet (high in protein and carbohydrates, low in sugar) and drink plenty of fluids to avoid dehydration.

6. Adjust your work schedule

Talk to your employer about making adjustments to your work schedule. Discuss the possibility of flexible working hours, reduced working hours or working from home.  Ask colleagues to help you with some of your work.  Talk to your occupational health adviser if you have one. They have a duty to support you doing your job and help you with any health problems that may affect your work.

Though fatigue is a common symptom when you have cancer, there are steps you can take to reduce or cope with it. There’s no one way to diagnose or treat cancer-related fatigue. Try some or all of these coping tips until you find what works for you.

How Your Lifestyle Can Affect Genes That Cause Cancer

There are two schools of thinking about cancer.  School one says that cancer is a hereditary disease, passed from generation to generation.  A good example of this are women who possess the BRCA1 and BRCA2 gene mutation.  Women with this mutation have a 70% lifetime risk of developing breast and/or ovarian cancer.  Angelina Jolie, for example, lost her mother and aunt to cancer and was subsequently found to have the same mutation.

The second school says that cancer can occur due to lifestyle choices.  A good example of this is cigarette smoking. It is the number cause of lung cancer, linked to 80 – 90% of lung cancer cases.

Recently, researchers at the Boston University School of Medicine have introduced another theory about the development of cancer.  They proposed that there are processes within our cells that activate certain sequences of DNA.  Those processes act as on/off switches for the development of cancer.

This idea is based on the evolving science of epigenetics. Epigenetics looks at the way genes express or don’t express themselves as we age.  Those gene changes are thought to be influenced directly as a result of our nutrition and behavior, as well as exposure to toxins in our environment.  In a sense, it’s a hybrid of hereditary disease and lifestyle choices.

Epigenetics is a normal process in our bodies.  For example, all of our DNA is the same, yet cells develop into liver cells, brain cells, muscle cells, etc. because of the way epigenetics turns on and off different cell processes.  But our lifestyle choices can impact the way genes express themselves as well.

Perhaps you’ve heard the expression “Sitting is the new smoking.”  The reason for this is due to research on lifestyle and cancer.  The results of dozens of surveys found that a sedentary lifestyle increases the risks of cancer, specifically colon cancer.  Subjects who spent most of their day sitting were 24% more likely to get colon cancer.  People who watched the most television had a 54% greater risk than those who watched fewer hours.  Uterine cancer was also affected by sitting; women who were the most inactive experienced a 32% great risk.  The female T.V. watchers fared worse; those who watched the most television has a 66% risk of developing uterine cancer.

In all these cases, it’s not the inactivity per se that causes cancer to develop.  It’s the processes of epigenetics that are affected by inactivity that can cause cancer.

It’s a complicated and exciting time.  Next month, more on how unhealthy habits are incorporated into our DNA and passed onto our children.


Sources:

https://blogs.scientificamerican.com/guest-blog/lifestyle-choices-could-affect-gene-sequences-that-code-for-cancer/

http://www.nature.com/scitable/topicpage/epigenetic-influences-and-disease-895

http://www.whatisepigenetics.com/fundamentals/2/

Reducing Your Risk of Cancer

The American Institute for Cancer Research (AICR) estimates that approximately one-third of cases of the most common cancers in the U.S. could be prevented, which accounts for about 374,000 cases of cancer per year. Cancer prevention is action taken to lower the chance of getting cancer therefore reducing the burden and deaths from cancer each year. Since February is Cancer Prevention Month, we wanted to highlight some ways to reduce your risk and protect yourself from cancer.

1. Eat a healthy diet & Stay active

Eating a balanced plant-based diet filled with a variety of vegetables, fruits, soy, nuts, whole grains, and beans can help lower your risk for many types of cancer and will help you maintain a healthy weight.

Adults should get et at least 150 minutes of moderate intensity or 75 minutes of vigorous intensity activity each day (or a combination of these), preferably spread throughout the week. While children and teens are recommended to get at least 1 hour of moderate or vigorous intensity activity each day, with at least 2.5 hours of moderate intensity aerobic activity each week.

2. Protect yourself from the sun

Sun exposure at any age can cause skin cancer. Be especially careful in the sun if you burn easily, spend a lot of time outdoors, or have any of the following physical features:

  • Numerous, irregular, or large moles
  • Freckles
  • Fair skin
  • Blond, red, or light brown hair

To block UV rays try covering-up, wearing sunscreen, wearing a hat, using UV-absorbent shades, and limiting you exposure time.

3. Get immunized

The human papillomavirus (HPV) vaccine helps prevent most cervical cancers and several other kinds of cancer, and the hepatitis B vaccine can help lower liver cancer risk.

4. Avoid risky behavior

Another effective cancer prevention tactic is to avoid risky behaviors that can lead to infections that, in turn, might increase the risk of cancer. Some behaviors to avoid:

  • Excessive alcohol consumption
  • Tanning beds
  • Tobacco use
  • Unsafe sex
  • Sharing needles

5. Get regular medical care and screenings

Along with regular check-ups with your physician to maintain an open health dialogue, cancer screenings should also be scheduled. These include the following:

  • Pap smear – Most women ages 21 to 65 should get Pap tests as part of routine health care. Even if you are not currently sexually active, you should still have a Pap test
  • Colonoscopy – Colon cancer screening should begin at age 50 for most people. If a colonoscopy doesn’t find adenomas or cancer and you don’t have risk factors, the next test should be in ten years.
  • Mammogram – Women should should get mammograms every year starting at age 40, for as long as a woman is in good health
  • Checking skin for irregular moles, etc.

Sources:

https://www.cdc.gov/cancer/dcpc/prevention/

http://www.mcancer.org/cancer-prevention

http://www.mayoclinic.org/healthy-lifestyle/adult-health/in-depth/cancer-prevention/art-20044816

https://www.osha.gov/Publications/OSHA3166/osha3166.html

The digital sherpa™ Program

The digital sherpa™ Program helps cancer patients and care partners become more tech-savvy in order to be empowered in their health and healthcare decisions. The program is currently carried out in two different versions, either a in-person, hands-on digital sherpa™ Workshop or through the creation of a digital sherpa™ Help Desk at well known cancer centers.

Cancer patients or care partners who express a desire to become more competent in Internet and social media skills will meet with college students who have been specially trained as Internet “sherpas”. The students will offer help to find support and informational resources online and may include the following:

  • Information about their disease and other health resources
  • How to get help to become a self-advocate
  • Where to connect with other patients
  • How to become more tech-savvy

Please check out the video below that was produced from our pilot program.

digital sherpa™ Program from Patient Empowerment Network on Vimeo.

2018 Outcomes

In 2018, we carried out this program in partnership with Moffitt Cancer Center and Cancer Support Community, and the infographic below highlights some of the achievements of the Digital Sherpa™ Program.

17 Tips For Patient Engagement

To kick off 2017 and new year of patient engagement and empowerment, we are showcasing 17 tips from patients, caregivers, and leaders throughout the industry. A special thanks to our partner, The Conference Forum and their Patients as Partners US program, for helping to obtain a few of these excellent testimonials. Their tips and advice are as follows.

 

1. Jack Aiello

“Patients and their care partners need to get educated about their disease and become their own best patient advocates.  The internet can be a great resource where disease specialists create videos on topics from disease overview to treatments and side effects.  And by getting 2nd and 3rd opinions from disease specialists, you put yourself in the best possible position to make good decisions with your doctor.”


2. Randy Broad

One very important aspect of treatment, especially at the time of diagnosis, is to understand what treatment options your oncology team is recommending and why.  Many providers have ‘pathways’ which determine how a specific cancer (and stage) be treated.  Be sure to fully understand what’s behind and underneath this directive.  Many times it can be determined based upon cost, not best options currently available.”


3. Matthew Zachary

“Patients have the right to survive with dignity and quality and we deserve to be treated age-appropriately. More so, they also have the right to be made aware of the relevant support resources they are entitled to so they can get busy living. This is what it means to face cancer.”


4. Cindy Chmielewski

“Knowledge is power. Educated patients are empowered. Educate yourself. Join a support community either in-person or online; follow the #mmsm hashtag on Twitter; subscribe to disease appropriate YouTube channels, listen to webcasts/podcasts presented by patient advocacy organizations and engage in meaningful discussions with your healthcare team.

Be a partner in your care. “


5. Jennifer Ahlstrom

“Don’t be afraid to speak up. Patients who ask their doctor questions, ask for explanations and treatment rationales get better outcomes. Myeloma is a very complicated disease and there are now an incredible number of treatment options available for patients. If you don’t feel comfortable asking your doctor questions, it’s time to find another doctor, preferably a myeloma specialist who treats hundreds of myeloma patients.”


6. Marie Ennis-O’Connor

“Becoming an empowered patient means taking personal responsibility for your health. You engage with health care providers and systems in ways that are proactive, rather than reactive. You take positive steps in the direction of the care that is right for you.”


7. Scott Riccio

“Remember that YOU get to define value for your own care.  Nobody can read your mind, though, so you have to share what you value, how it impacts you, and what tradeoffs you are willing to make to get the outcomes YOU want.”


8. Andrew Schorr

“Ask your doctor questions! How can we be sure my diagnosis is 100% accurate? How much experience do you have treating this illness? Are there other tests that can help me get the most on-target treatment for my case? What are all the approved medicines for my situation? Why would you recommend one over another? What clinical trials could be right for me, whether or not you have them at this clinic/hospital?”


9. Esther Schorr

“As a care partner, it really is a time to be hopeful as the advances in cancer treatment are moving very, very fast. As it is for the patient you love, it is key to stay educated about advances in treatment options that might be right, and be actively involved in discussions about genetic testing and clinical trials.  It’s also critical to lean on your personal community…friends, family, counselors…in order to “keep it in the road” and retain realistic optimism. As more and more survivors and care partners reach out to each other and share stories, we all gain insights and perspective – and you will hopefully feel supported along the cancer journey. We are all in it together, and we are here for each other.”


10. Amy Ohm

“Caregivers need self-care to effectively care for a loved one – always make sure to put on your oxygen mask first! It can be incredibly challenging to focus on ones health with the daily demands of care-giving. Make 2017 the year you assess your own health and strive to reduce daily stress. Connecting privately with those who relate and to share experience to learn from others can help. We want you to be health in the New Year!”


11. David Wallace

“It is imperative that you gain a solid understanding of your disease so you can become your own advocate.  Connecting with other knowledgeable patients via social media or online forums to learn what has worked or failed to work for them is a good start.  Understand the treatment options that are available to you.  See an MPN specialist who will work with your local hematologist.  If you are not being treated with care and respect, don’t hesitate to seek a 2nd opinion and change doctors until you receive the level of care you deserve.”


12. Carol Preston

“NEVER hesitate to ask questions.  In fact, write down your questions in advance, take them with you to your appointment and go through them one by one.  Be sure to write down the answers (or get your care partner to take notes) as a short pencil is far better than a long memory.  Better yet, record the QA on your smart phone so that you can listen later to the answers as you’ll retain only about 10% of what the doc tells you during your appointment.”


 13. T.J. Sharpe

“Patients and caregivers can be better engaged in 2017 by reaching out to their patient community and actively becoming involved in the support of fellow patients through person to person and group interaction.  Patients and their caregivers can raise the bar for everyone involved in healthcare so that the expectations of patients as a partner in their care is not just accepted, but standard and demanded by patients.”


14. Marilyn Metcalf

“Set our goals together in the New Year, and then work together on our plans and make them happen.”


15. Durhane Wong-Rieger

“Patients are basically a heterogeneous lot, coming with all types of experiences and talents, as well as desires and needs.  Some patients want to have a voice in high-level  policy and system decision-making; some want to extend a personal hand of support.  The more diverse the channels and opportunities for involvement, the more patients can take active and meaningful roles. Every person naturally wants to feel respected and empowered so it doesn’t take much to engage patients: provide a portal, support, information, acknowledgement and most important action.”


16. Deb Maskens

“Patients and caregivers get information from a wide variety of sources, from personal anecdote to television advertising to medical journals. Empowerment and engagement for patients and caregivers in 2017 needs to start by providing them with more information that is trusted, balanced, and objective. Information is power. Let’s give patients and caregivers the information they need as the first step for them to be empowered and engaged in treatment decisions that are right for them as individuals.”


17. Jeff Folloder

“Resource management.  I’m not talking about managing the funds to pay for treatment or care.  I’m talking about managing you.  I got great advice from a lady in a waiting room at MD Anderson.  She told me that every day we wake up with a bucket of energy that we can spend on anything we want and it’s gone at the end of the day.  We can spend that energy on quality things and be tired and fulfilled.  Or we can spend it on silly things like worry and regret and go to sleep tired and empty.  She’s right.  And I remember her words every day.”

Cancer Support Community Helpline

The Cancer Support Community is an international non-profit organization dedicated to providing support, education and hope to cancer patients. CSC’s website has a wealth of information and resources available, including links to advocacy organizations, online support groups and discussion boards and a Cancer Experience Registry where you can obtain information about your specific cancer and help with research in that area. CSC offers a wonderful service to cancer patients:

Cancer Support Helpline®

Whether you are newly diagnosed with cancer or a long-time cancer survivor or caring for someone with cancer, or a health care professional looking for resources, CSC’s TOLL-FREE Cancer Support Helpline is open Mon-Fri 9 am- 9 pm ET.

You are welcome to call anytime.  If you receive a recording, please leave your name and contact number and one of our counselors will call you as soon as possible.

Please call 1-888-793-9355 and a CSC Call Counselor will be happy to assist you with any of the following concerns:

  • Information about local, regional, or national resources
  • Finding a Cancer Support Community program near you
  • General information about the Cancer Support Community and its services (in-person, online and by phone)
  • Help in talking about some of the emotional and social worries that cancer sometimes brings into our lives
  • Information about, and assistance in, ordering Frankly Speaking educational materials
  • Help finding a nearby support group, online support group or discussion group to connect with others
  • Short-term cancer counseling and emotional support
  • Open to Options™ treatment decision support counseling
  • Make a donation to the Cancer Support Community
  • Access to CancerSupportSource™ online distress screening program
  • Live web chat available during call center hours – CLICK HERE TO CHAT NOW!

 

Disclaimer

The Cancer Support Community provides this information as a service. Publication of this information is not intended to take the place of medical care or the advice of your doctor. The Cancer Support Community strongly suggests consulting your doctor or other health professional about the information presented.

 

 

The Benefits and Pitfalls of Blogging About Your Illness

In his book, The Wounded Storyteller, Arthur Frank, Professor Emeritus of Sociology at the University of Calgary, writes that when we are ill we are wounded not just in body, but in voice. He describes how illness can radically alter how a person relates to the world and how we need to find a way to restore our fractured identity. When I was diagnosed with breast cancer over a decade ago, writing a blog, Journeying Beyond Breast Cancer, helped me express myself, reconnect to a new sense of self, and find my voice again.

Throughout her life, the writer Virginia Woolf maintained that her work was incomplete until it was shared with readers. And I think this is also true of being part of a blogging community. When we share our writing, someone else has heard our voice. Someone else cares and understands. So often, illness causes us to feel isolated and cut off from others. Blogging is a way for us to find a shared sense of connection and community.

the-benefits-and-pitfalls-of-blogging-about-your-illnessYet sharing our story online is not without its pitfalls; the most obvious of which is a loss of privacy. You should consider how revealing your medical history online might have an impact on your family and professional circumstances. How will your employer, co-workers, or other family members view you? Do you risk being over-identified with your illness? For me, disclosure of my own story has evolved from initial anonymity to a point where I now choose to share more openly. However, the degree to which I share information still depends on the space where I share it and the degree of trust I have with the people I share with (for instance I consider my blog a safe space to tell my story, but I am more cautious on Twitter). But what happens if that safe space is violated and our expectations of trust are shattered? When our words are taken out of context or used for a purpose we didn’t intend? Is information shared publicly implicitly available to everyone just because it is in the public domain? What are the ethics of research that includes collecting and analyzing patient stories or observing online behaviour without individuals knowing they are being included in research? In an age when technology has outpaced the ethical underpinnings of research and the culture surrounding privacy has changed profoundly, these are questions we need to find answers to.

Although we understand that what we share online is in the public domain, we nevertheless trust each other to maintain a collective sense of privacy, which includes not having our words reproduced without our knowledge or taken out of context. The issue of maintaining privacy in the public domain was brought into sharp focus two years ago when blogger Lisa Adams became the subject of an online debate. Adams, who blogged and tweeted about her experience of living with end-stage cancer, came to the attention of two journalists who strongly criticised what they called “Adams dying out loud.” Their opinions ignited a firestorm of debate about the public disclosure of illness, and the sharing of personal choices surrounding treatment and death and dying.

Illness makes us vulnerable and learning to navigate the digital landscape while also managing our vulnerability is a skill that we need to master if we are to protect ourselves online. Think carefully about what the process of online disclosure entails. Weigh up what you expect to gain from it and what implications sharing this information might have on your career or family life. If you are a parent or carer who writes about a patient, do you have their permission to share this information? In the case of writing about a child, what future effect might this have on one who cannot give consent or understand the significance of their story being shared so widely?

People have always gathered together to share what they know about health and illness, hoping to help and learn from others. What’s new is that we now have the ability to expand the reach of our conversations at internet speed and at internet scale. What happens in real life happens on line, but faster. This has many benefits, but it also means there is a higher potential for unintended consequences when we have less control over who sees our stories. It’s a good idea to periodically review the privacy settings on your social media accounts to decide if you are comfortable with the level of control you have over the information you share. Ask yourself, if your intended audience were sitting in front of you now, how comfortable would you feel sharing this information? How do you think you’ll feel after sharing it? Are you ready for feedback (positive or negative)? Remember sharing your story online doesn’t have to be all or nothing. Go slowly at the beginning, allow trust to build over time, and share only when you feel ready to do so.

Above all, be courageous in sharing your story. I am filled with gratitude for those who bravely blazed the trail in opening the discussion and decreasing the isolation connected with serious illness. I continue to be in awe of the connections and communities forged in the digital space and I look forward to seeing how this will evolve over time.

 

 

Mental Health & Cancer

Anxiety, fear and depression are commonly associated with life-changing events – especially cancer. People with cancer may find the physical, emotional and social side effects of the disease to be stressful. This stress may result from changes in body image, changes in family or work roles and physical symptoms due to treatment. Family members and caregivers often feel these same stressors, as they fear the loss of a loved one. They may feel angry because someone they love has cancer, frustrated that they “can’t do enough,” or stressed because they have to take on more at home. So many of these feelings are completely normal, but what is typical and when may outside help be needed?

According to The American Cancer Society, signs that the patient or a loved one may need help are the following:

  • Suicidal thoughts (or thoughts of hurting himself or herself)
  • Unable to eat or sleep
  • Lacks interest in usual activities for many days
  • Is unable to find pleasure in things they’ve enjoyed in the past
  • Has emotions that interfere with daily activities and last more than a few days
  • Is confused
  • Has trouble breathing
  • Is sweating more than usual
  • Is very restless
  • Has new or unusual symptoms that cause concern

If you or a loved one have experienced one or more of the above symptoms, there are many options for help.

Speak with your cancer team

If you find any of the above symptoms to be true, one of the first steps may be talking with your cancer team. Your team should be able to answer any questions, talk about your concerns, and, if needed, refer you to a mental health professional. Anxiety occasionally stems from the fear of uncertainty from treatment or medication side effects, so knowing what to expect may be the first step in coping.

Seek support

Once you have spoken with your cancer team and support system to determine a treatment plan, put it into action! Any of the below activities may supplement the treatment prescribed by your doctor in making both you and your loved ones feel less alone and anxious during this difficult time:

  • Training in relaxation, meditation, or stress management
  • Counseling or talk therapy
  • Cancer education sessions
  • Social support in a group setting
  • Online support groups
  • Medications for depression or anxiety

Get moving

Exercise has been proven to improve individuals’ quality of life and physical functionality. Though rest and relaxation are crucial to maintaining a healthy mind and body, regular exercise may help maintain and even improve your health. Exercise may help during treatment by improving balance and physical abilities, lowering the risk of osteoporosis and heart disease, and lessen nausea. Even more importantly than physical health, exercise may improve patients’ self-esteem, mental health and quality of life.

Every individuals’ physical needs and potential are different, so it is important to speak with your doctor about what exercises are best for you. Because the stage and treatment plan for cancer patients differ, so may each patients’ stamina and strength. Staying as active and fit as possible is essential to maintaining physical well-being during treatment, so tailoring an exercise program that fits your ability and preference is essential.


Resources:

cancer.org

cancer.gov

Seven Steps to a Successful Digital Advocacy Strategy

MEO SeptDigital advocacy concerns the ways in which you engage your audience online and inspire them to take action around your cause. Using digital tools and applications can amplify your issue, while giving you new opportunities to listen and engage with supporters, and monitor your progress.

Creating a digital strategy will help you focus on your goals more clearly, choose the right digital tools, promote key messages, and measure outcomes more effectively. Ultimately, the right strategy gives you the best chance of using digital channels (like Facebook, Twitter, Instagram, etc.) to reach the right audiences with the right messages at the right times to advance your advocacy.

Step One: Set Your Communication Goals

The first step to any advocacy strategy is to establish clear objectives and goals that you hope to achieve. What are you trying to accomplish? For example, you might want to increase public understanding of the issues you advocate for, mobilize supporters to take action, or raise funds to support your cause. You will need to set SMART goals, which are:

  • Specific
  • Measurable
  • Attainable
  • Realistic
  • Timebound

Specific – define your goals as clearly as possible.

Measurable – put figures on what you want to achieve e.g. increase visits to the website by 40%; gain 100 new Twitter followers or Facebook Likes.

Attainable – make your goal attainable in terms of the resources and capabilities you have.

Realistic – to be realistic, a goal must represent an objective toward which you are both willing and able to work.

Timebound – your goal should be grounded within a time frame.

Step Two: Define Your Target Audience

Who does your message need to reach? Obviously, you want to reach as many people as possible, but by choosing which audience to prioritize in your digital communications you will improve your reach, enhance relevance and put your resources to the best possible use. Find answers to basic demographic questions about your audience, what issues they are concerned with, alongside which online communities inform, inspire, or influence them. You can then tailor your content more specifically to match your audience.

Step Three: Choose the Right Social Channels

Once you’ve identified your target audience, map this information to social media behavior to help determine which social channels to concentrate on. Publically available reports, like Pew Research Center The Demographics of Social Media Users, can help you with this step. Social media are dynamic and constantly changing. When you develop your digital advocacy strategy, be prepared to be flexible. As new networks emerge you might want to add them to your strategy, but it’s important to always relate this back to your goals and your audience to ensure it fits your plan.

Step Four: Create Compelling Content

What is the key message(s) you need to convey to your target audience? How will you communicate it? Sharing the stories of
real people affected by your cause will be the most powerful and compelling content you can create. Share this content via blogs, videos, podcasts, email, etc. Bear in mind the content that works best on the platforms you have chosen. The continuing growth of visual platforms, such as Pinterest, Snapchat and Instagram mean that incorporating visual content into your digital strategy is important. Whichever type of content you create include a clear call-to-action. Make it clear and unambiguous what the next step is after reading or viewing your content; for instance, sign a petition, share on Twitter and Facebook, or donate to your cause.

Step Five: Implementation

Time is probably the biggest challenge in implementing your strategy. To achieve results and credibility you have to be prepared to commit time regularly to producing and promoting content and engaging with your audience. Decide on how much time you can realistically devote to implementation. Do you have time to write regularly for a blog? Would it be better to make short videos instead? Create an editorial calendar and list the dates and times you intend to post blogs, Facebook posts, Twitter updates, etc. Use a scheduling tool, like HootSuite or Buffer, to schedule you social media updates in advance. There are numerous tools and applications, many of them free, which can help you spend your time more efficiently and productively on social media.

Step Six: Monitor Social Media

It’s important to monitor social media on a regular basis to keep on top of what people are saying about you, your organisation, campaign, or issue. It also gives you an opportunity to find relevant online discussions related to your cause, allows you to adjust your strategy in real time and guides you to key online influencers and opinion leaders who can help amplify your message. Setting up a simple Google Alert (email updates of the latest relevant Google results based on your queries) with relevant keywords is a good place to start. Use a tool like Hashtracking to monitor a particular hashtag, related hashtags, and the top influencers of that hashtag.

Step Seven: Measure and Evaluate

The final step is to measure and evaluate your progress, adjusting your strategy if necessary. Some key metrics to track are the number of followers you attract and retain, which social media channels drive the most traffic to your website, the number of comments you get, and how many times your updates have been shared. Google Analytics will provide you with detailed analytics to measure your website performance. Each of the main social platforms also has their own analytics built in. Other useful tools include:

  • TweetReach measures the reach and exposure data for your tweets
  • SumAll measures your Twitter follower growth, mentions, and engagement
  • Klout measures your online social influence via a “Klout Score”, which is a numerical value between 1 and 100.
  • Spredfast measures data gathered from Facebook, Twitter, YouTube, and Flickr, to show how many people you’ve reached and whether or not your target audience is engaging with you.

Final Thoughts

Digital advocacy helps amplify advocacy efforts by potentially reaching more people, in more places, faster than ever before. It works best when it is aligned with your existing offline tactics. Think about how you can integrate your everyday advocacy activities with your digital strategy to maximize impact. Don’t expect digital advocacy to work right away. It is a strategy that will succeed long-term, rather than be a quick success. If you want to see real results, you must be prepared to commit to it long-term. Finally, keep in mind that social media are constantly changing and evolving, and you will need to keep evaluating your strategy to ensure you are maximizing your opportunities to engage meaningfully with your supporters.

Engagement For Seniors

As the healthcare industry moves towards a more patient-centered model, they cannot forget about the fastest growing segment of our population, the older adults. According to the US Census Bureau, 72 million Americans will be 65 or older by 2030. With this growing and aging population, how can offices, hospitals, and healthcare professionals engage seniors? It’s no secret that engaging people in their own health care, especially through shared medical decision making, results in improved health outcomes, improved patient satisfaction, and cost savings. Below are several examples for how senior engagement can be achieved.

Clarify medical communication

With age comes the natural decline of hearing and seeing, so keeping educational tools more visual and basic is crucial. That coupled with avoiding medical jargon will help older patients become more engaged. According to Solution Reach, keeping it simple is best:

“Although the senior community desires to be more technologically savvy, they are often still learning; they require guidance to catch up to the knowledge and experience of the younger generation. It may seem obvious, but sticking to the basics will ensure that landing pages, advertisements, emails, and other promotional materials are easy to read and understand.”

Engage beyond the office

Going beyond the doctor’s office and utilizing digital technology has been proven to improve the patient experience, such as follow-up prescriptions/appointments, treatment discussions, access to EHRs, and medical reminders. Capstrat highlights adherence problems (i.e. taking medications, exercising, following a specific diet, attending therapy, etc) as a main problem that gets worse with age. Reminders, tips, or motivation via email, snail mail, or social media can help to combat these issues. Understanding and honoring their preferred means of communication is one of the first steps. However, healthcare professionals should still realize they have the same ethical responsibility with these methods as they do in the office.

Don’t forget the caregiver

The need to include the patient’s caregiver is essential for older adults. The caregivers are often times the children of the patient and are the ones handling the finances, medications, transportation to appointments, etc. The caregivers spend a substantial time with the patient, while the doctors and other HCPs time is limited, demonstrating this need to include them. Capstrat suggests incorporating them by adding caregiver contact information onto new-patient forms online and offline, and sending treatment information directly to the caregiver.

Utilize technology

According to Welltok’s Senior Health and Technology Survey, more than 50% of seniors use tech to improve health. This survey also pointed out that most seniors do not use wearable, but would be willing to use a health program accessible on a computer or mobile if recommended by a doctor. What does this mean? Older patients are relatively tech-savvy and are looking for resources that are both useful and useable.

Organize resources

Keeping track, organized, and up to date on all your medical records is a big undertaking. According to MedCity News:

“… there are a lot of resources available from AARP, Medicare, retail pharmacy programs, but it is a lot to manage and navigate. Seniors need help organizing everything they need to accomplish their goals in one place. This population requires a consumer-designed platform offering a single channel for presenting benefit, health-related and other resources to support them.”

The senior population is an expanding group with their own specific needs for engaging in their healthcare. Healthcare entities would be wise to understand, honor, and cater to those needs.


For those older adults that don’t quite have it all figured out yet, Patient Empowerment Network is excited to launch its first digital sherpa™ Workshop this fall in Florida with the hopes of expansion in the future. This workshop is designed to parter the tech-savvy, college students with the not so tech-savvy, older patients with each other for tips and tricks on how to navigate the internet and social media to better their healthcare. Sherpa Logo

References:

www.healthwise.org/insights/healthwiseblog/mmettler/september-2014/2264.aspx

www.solutionreach.com/COMPANY/blog_viewer/are-senior-citizens-engaging-in-healthcare-technology

http://medcitynews.com

Running From Cancer – And Towards Lower Risks

As you head out for your run, walk, or swim of the day, it’s good to know that in addition to the widely known cardiac benefits, exercise also brings documented results in lowering cancer risks. A recent study from researchers at the National Cancer Institute and the American Cancer Society found evidence that the current recommendation of moderate-intensity activity, now a little more than 20 minutes a day, is also a key component of cancer prevention. Steven C. Moore, Ph.D. noted, “Leisure-time physical activity is known to reduce risks of heart disease and risk of death from all causes, and our study demonstrates that it also associated with lower risks of many types of cancer.”

This may not be news to many because there have been literally hundreds of studies linking physical activity and cancer risk. This new study took a much larger look at the data, pooling information on 1.44 million Americans and Europeans ages 19 – 98 and followed the data for a median of 11 years. What stood out particularly was the reduced risks for breast, colon, and endometrial cancers.

Most studies targeting breast cancer show that physically active women have a lower risk of developing this kind of cancer. Depending upon the study, the risk reduction varies widely, between 20 to 80 percent. Activity starting in adolescence is found to be the most beneficial; however, that doesn’t let older ladies off the hook. No matter when an exercise program is started, active women enjoy reduced breast cancer risks when compared to sedentary women.

It is also estimated that daily sessions of moderate physical activity has a protective effect against both colon and endometrial cancers, from 30 to 40 percent reduced risk. One overarching question on all these studies is how does exercise reduce cancer risk? There seem to be a number of mechanisms in place including the lowering of hormone levels and insulin growth factors, improving the immune response, and reducing the time certain organs are exposed to potential cancer-causing substances. Exercise also seems to lower inflammation, which could play a role in cancer development. So, tie up those walking/running/cross training shoes and have a go at it! No matter how you look at it, exercise provides significant benefits on many levels in cancer prevention.

 

Sources:

http://www.cancer.gov/about-cancer/causes- prevention/risk/obesity/physical-activity- fact-sheet#q4

https://www.nih.gov/news-events/news- releases/increased-physical- activity-associated- lower-risk-13- types-cancer

Why Your Patient Story Matters

“Tell me a fact and I’ll learn. Tell me a truth and I’ll believe. But tell me a story and it will live in my heart forever.” North American Indian proverb

As a patient or caregiver you may be asked to share your personal story with others. Your story serves as a powerful tool for raising awareness and offering valuable insight into the patient experience. Stories can be a bridge between the technical, rational world of scientific practice and the experiential world of patients. Stories also create a shared sense of meaning and community in our lives, lessening the isolation many of us feel when faced with a chronic illness.

The Power of Story

Stories have existed in our culture from the beginning of time. We use stories to derive meaning from experience and to pass along knowledge and wisdom. Recent breakthroughs in neuroscience reveal that your brain is in fact hardwired to respond to story. Your brain on story is different from your brain when it is receiving any other form of information, including straight facts and data. While facts and figures engage a small area of the brain, stories engage multiple brain regions that work together to build rich emotional responses.

In 2010, a group of neuroscientists at Princeton University used an fMRI machine to monitor what was going on inside the brains of both story-tellers and listeners simultaneously. They discovered that whilst the speaker was communicating to the listener, both their brains showed very similar activity across widespread areas. Their brains were effectively ‘in sync’ with one another suggesting a deep connection between storyteller and listener.” [1]

Tapping the Power of Patient Stories

Humans have an innate desire to feel connected with others who live life through similar lenses. When I first started telling my own story on my blog Journeying Beyond Breast Cancer, I did so in the hope that others on the same path might find some resonance and the knowledge that they are not alone. Chronic illness can be an isolating experience but the very act of sharing our stories with others counteracts the isolation we so often feel. It carries within it the seeds of community and connection which makes us feel less alone in our journey. Diabetes patient advocate and blogger Renza Scibilia captures this feeling when she writes: “There are billions of stories in the world and when we find people we connect with, we reach out and want to hold on. I know that’s how I feel about the Diabetes Online Community – I hear familiar stories and want to grab onto them and the people who wrote them because they help make sense of my diabetes life.”

Patient advocate and author, Jackie Barreau, believes the importance of sharing her personal story lies in “the ability to connect, empower and help others. It is also uplifting and inspiring to hear of people’s hardships whether through illness or unfortunate life events and the positivity & optimism they convey”.   Not only can sharing your story lessen feelings of isolation and open up new avenues of support, it can also offer vital diagnostic clues when others are searching for answers. Jackie explains, “through my volunteer work with for example, the Unicorn Foundation, as an admin for an online patient support group I see first-hand patients joining our group due to lack of knowledge and misinformation provided by their general practitioners and also physicians.”

The National Gaucher Foundation of Canada has coproduced an excellent storytelling toolkit with rare disease patient advocacy organization, Global Genes. It states that “medical terminology and data, though undeniably important, can obscure what it means to live with a disease and make it difficult for most people to relate. Personal stories, though, frame our individual experiences in a way that lets others connect and find diagnostic clues that may have been missing.” Isabel Jordan, the mother of a son with a rare disease, credits reading a patient’s blog to help her finally see the pattern in symptoms in her own son’s life, which set them on a new diagnostic path. “As a parent of a child with a rare disease I’m constantly looking for patterns, for clues, for ideas of what could be next in our diagnostic journey,” she writes, “I look for researchers, doctors, other connected parents to see what they are posting. It was through reading someone else’s blog that I could finally see the pattern in symptoms in my own son’s life. Connecting the dots by seeing them in someone else let me provide valuable clues to our own clinician researchers and now we’re heading down a new diagnostic path.”

How To Tell Your Story

Whether you tell your story through public speaking, print or online social media, take some time to plan ahead for what you will share and how you will share it. Speak from the heart; be accurate, honest and persuasive. The following questions will help you to develop your story in order for it to have maximum impact.

  • How much of my personal story am I willing to share? Be prepared that telling your story might make you feel emotional and vulnerable so enlist some support if you think you might need it.
  • What is too private to share? Let the audience know your boundaries.
  • How comfortable is my family with me talking about my story (or theirs)?
  • What supporting material will make my story stronger? Can you use pictures, research data, and statistics to support your story? Create an experience in images that evokes an emotional response.
  • What is the main take-home message you wish to leave your audience with? Focus on two or three main points for clarity.
  • What do I want my listener to do when I am done? Do you want your listeners to take action after hearing your story? Outline clearly the next steps they can take to do so.

Taking the decision to share your story is a personal one. Emma Rooney, a rare disease patient advocate has this to say:

“I’ve been telling stories since I was a child but my health story always seemed like something to keep private. Despite living with a rare disease my entire life, it wasn’t until becoming a young adult that I decide to share my journey with Gaucher disease. Openness to sharing has led me to other patients who have similar health experiences, and also connected me with stories that are very different from my own. This diversity helps me to better understand my condition and to connect the dots with new information. Storytelling has provided a type of healing that drugs alone can’t offer. My health is an evolving story, and continuing to be a storyteller is part of my wellness strategy and my way to contribute to the global community of patient advocates.”
Each of us has a compelling story to tell; a story with the power to build connection, increase understanding, and move others to take action. Developing our skills as storytellers is a powerful tool in our patient advocacy toolkit. Your story is a precious resource; use it wisely and well.

[1] PNAS.org: Speaker–listener neural coupling underlies successful communication by Greg J. Stephens, Lauren J. Silbert and Uri Hasson.