App Spotlight: Medisafe

Think. Did you take your medications today?

You’ve probably heard the statistics: 50% of patients don’t take their medications as prescribed. That might mean they take the med at the wrong time, forget proper technique for an injection, eat food before taking the med when they aren’t supposed to, or just forget to take it altogether!

Unfortunately, medications can’t work if they’re not taken.

Taking medications incorrectly can be dangerous, and for 700,000 people this mistake results in a trip to the hospital and thousands more dollars spent. Folks over the age of 65 are often taking upwards of 14 meds a year which can be very difficult to manage alone.

What can you do to make sure you’re staying on track? Here are a few quick tips:

  1. Set up reminders for all your medications, including meds you take as needed and directions for taking the meds
  2. Connect with your friends and loved ones! Those we love help keep us honest. If they know we’ve missed a dose, they can help get you back on track. Talking about your health with
  3. Ask questions! Your doctor and care team are there to help you through this journey, but it helps to be your own best advocate. Let them know if you’re having trouble taking certain medications so they can figure out a more fitting option!

If you’re struggling to keep track of your medications, or have a loved one with a new prescription, try Medisafe and join the other 4M Medisafers who are setting themselves up for success.

MEDISAFE APP FEATURES

Virtual Pillbox

Medisafe’s familiar pillbox design makes it easy to start right away. With four quadrants, it’s easy to keep track during the day and know which pills you’ve already taken.

Digital Reminder 

No matter what phone you use, Medisafe is your digital reminder companion – we’ll never let you forget your next does. 

Forgot to take your meds? Add a Medfriend who will be alerted in case you do slip and they too can help keep you on track.

Health Education

Medisafe gets you started by educating you about your meds and condition, then keeps you going with motivational progress reports, helpful daily tips, and discount prescription offers tailored to you.

Learn More

Download Medisafe

Patient Advocacy: Understanding Your Illness

The news that you, or a loved one, has a serious illness can be a terrible blow.  You may be faced with an array of emotions ranging from shock to fear to anxiety. You will likely have many questions and concerns about what the coming days and months will bring, and the impact living with this illness will have on your life and the lives of your family. Although you may be reeling from the news, it’s important that you learn as much as you can about your diagnosis, its symptoms, how it may progress and what treatment options are available. In this article, you will learn which questions you should ask your healthcare team and where to find reliable and trustworthy information to become better informed about your health condition.

1. Obtaining Information From Your Doctors And Healthcare Team

Having answers to your questions can help you understand your illness better and feel more in control about your treatment decisions.  How much information you want is up to you. Some patients feel overwhelmed by too much information at this stage.  Others say they didn’t receive enough information.  While information upon first diagnosis is vitally important, you may be in shock and in a heightened emotional state which makes it difficult to fully comprehend all the information you are given. If possible, bring a trusted friend or family member to appointments with you to take notes. If this is not possible, ask your doctor if you can record the consultation so you can focus on listening, and go back and review what was said later.

Medical care is a conversation and to have influence in that conversation you have to speak up. Never be embarrassed to tell your healthcare team if you don’t understand something they’ve said. Sometimes doctors use medical jargon without realizing they are not explaining things in terms we understand. Repeat what the doctor has told you to be sure you understand and ask for clarification if needed.

Some questions to ask your doctor about your diagnosis:

  • What are the symptoms of this illness?
  • What should you do if you notice new symptoms or if existing symptoms worsen?
  • Do you need any further diagnostic tests?
  • What are your treatment options?
  • What are the side-effects of the recommended treatment?
  • What are the benefits vs the risks?
  • What happens if you do nothing?
  • Are there other treatment options available?

Finally, ask your healthcare team if they can recommend further reading, support groups and other resources to help you learn more about your illness.

2. Finding Reliable Information Online

As you move along the patient journey and better understand your illness, you may want higher levels of information. However, you may find the information healthcare professionals provide has not keep pace with your increased needs. This is the point where many patients turn online to seek more information. While the Internet can be a useful source of health information, it’s important to know how to critically evaluate the information you find online. Always discuss what you find with your healthcare team and ask them to put the information into context for your particular situation.

Here are some questions to help you determine the trustworthiness of online sources of information.

  • Who has produced the information?
  • Does the organization have commercial interests or another reason they are promoting this information?
  • Is the name of the organization and their aims in setting up the website clearly shown?
  • Does the site provide contact details if you have any questions?
  • Is the information on the website up to date?
  • Does it cite the source of the information that is being presented?
  • Does the site link with other reputable sites that give similar information?

3. Evaluating Medical News Reports

Whether it’s published in hard copy or online, medical news reports can mislead people into thinking a certain drug or treatment is the next breakthrough in a disease.  As patient advocates we must learn to read beyond the headlines to filter out the good, the bad, and the questionable.

The following questions will help you evaluate the reliability of medical news reporting.

  • Does the article support its claims with scientific research?
  • What is the original source of the article?
  • Who paid for and conducted the study?
  • How many people did the research study include?
  • Did the study include a control group?
  • What are the study’s limitations?
  • If it’s a clinical trial that is being reported on, what stage is the trial at?

Always try to read an original study (if cited) to critically evaluate the information presented. Understanding research literature is an important skill for patient advocates. For tips on how to read a research paper click on this link.

4. Learning From Peers

From helping us to uncover a diagnosis and finding the right doctors and treatments, to learning about everyday coping tips, turning to our peers can make all the difference in how we live with our illnesses.  Much of this peer-to-peer learning takes place through social media discussions on patient blogs and in Facebook groups and Twitter chats. On Facebook you can connect with other patient advocates and join Facebook groups related to your disease or health condition. On Twitter you have a greater mix of patients, physicians, healthcare professionals and medical researchers coming together to discuss healthcare matters. It is becoming increasingly popular for attendees at key medical conferences, such as ASCO, to “live-tweet” sessions. You can follow along on Twitter using the conference hashtag which you should find published on the conference website. Another way to learn on Twitter is to join a Twitter chat related to your health condition. Twitter chats can be one-off events, but more usually are recurring weekly chats to regularly connect people. There are chats for most disease topics and a full list can be found by searching the database of the Healthcare Hashtag Project.

Final Thoughts

Understanding your illness is the first step on the path to advocating for yourself and others.

Being an advocate involves asking lots of questions, conducting your own research, and making your preferences known to your healthcare team. By doing this, you will be better informed and in a stronger position to get the treatment that is right for you. If this feels overwhelming to you right now, go at your own pace, and reach out to others who have walked this path before you. There is an army of patients who are standing by, ready to share their healthcare wisdom and practical coping tips with you. Seeking their advice will help lessen the fear and isolation you may be feeling, give you a sense of shared experience and connection, and help you feel more in charge of your healthcare decisions.

Caregiver Health #CareforaCarer

Often, in my observations as a registered nurse, I have seen how resilient people can be. Through the most challenging health circumstances, patients of all ages can rally and respond to support and care. But when I refer to resilience and strength, I’m applying it to the silent army known as caregivers.

In homes, in chemo suites, hospice care, and everywhere else, on a daily basis, you can find caregivers who step up in the moments when it is needed most. These carers (used interchangeably with caregivers) provide unpaid assistance to someone in need. Often family and friends, caregiving can be one of the most rewarding experiences, but also one of the most difficult. I can say that with absolute certainty, not just as a nurse, but as a caregiver for my family.

I cared for my father through his cancer battle, his stem-cell transplant, and ultimately through hospice until his passing. It was a privilege to care for him, and I would do it all over again, but I don’t say that lightly. Caregiving can involve the hardest days and can take emotional, physical, and financial tolls with no outlet to share those feelings. This is why we need to spotlight and discuss the need to #CareforaCarer.

Here are some facts.

More than half (54%) of unpaid carers don’t have time to book or attend their own medical appointments.

42 % of unpaid carers put health of the person they are caring for above their own health.

Almost 3 in 10 unpaid carers feel their role as a carer is not recognized by the healthcare system.

While many understand that carers play a crucial role in lives of patients, what’s less understood is the need for resources and support. A carer’s own health often suffers as a result of the stress and demands of caring for someone else.

There is help.

Through working with carer organizations, and the multi-year Embracing Carers initiative, Merck KGaA Darmstadt, Germany operating as EMD Serono in the US and Canada hopes to improve lives for carers and patients.

The Embracing Carers initiative plays a key role in raising awareness of caregiving as a global public health priority as it should be. Healthier carers lead to happier, more productive workers and better carers of patients.Here’s some more information.

Embracing Carers is supported by leading international carer organizations including: the Caregiver Action Network, Carers Australia, Carers UK, Carers Worldwide, Eurocarers, the National Alliance for Caregiving, International Alliance of Carer Organizations and Shanghai Roots & Shoots, China. It has support of many patient and physician groups around the world.

Embracing Carers Initiative addresses caregiver stresses by highlighting the unmet needs of caregivers on a global and local level, empowering caregivers to advocate for their own health and well being.

As a nurse, I often preach to colleagues that you can’t take proper care of patients if you’re not taking care of yourself, and the same goes for caregivers. It’s easier said than done, but through action and discussion, we can help support each other.

What can you do to help?

  • Share this blog post.
  • Post messages of Hope intended for caregivers globally with #CareforaCarer.
  • And if you see #CareforaCarer on Twitter take a moment to hit Retweet.
  • If you belong to an organization or a business that supports carers or caregivers please share your positive programs or examples as well.

 


This blog was written by Linda Scruggs and originally published on Unboxed Mom here.

Notable News: January 2018

The Food and Drug Administration has approved yet another new cancer treatment, reports npr.org. Known as Luxturna it is the first gene therapy to treat an inherited disease in adults and children. Luxturna, made by Spark Therapeutics, treats a rare condition that causes blindness called retinal dystrophy by using a modified virus to carry a healthy gene into the eyes of patients. The approval of Luxturna, along with Kymriah and Yescarta, which we told you about here and here, are hopeful milestones for the advancement of gene therapies. However, it’s not all good news. There are concerns regarding the safety of some of the treatments due to some life-threatening side effects, and concerns regarding the cost of these therapies. Kymriah and Yescarta both cost hundreds of thousands of dollars and according to nbcnews.com Spark Therapeutics announced earlier this month that Luxturna will cost each patient $850,000, or $425,000 per eye. While the drug companies are saying the pricing is fair because of the risks and costs that go into developing such therapies, many patient advocates disagree. Spark Therapeutics does say they are working within the health care industry to come up with ways to make the drug accessible to those who need it. Undoubtedly, the cost debate will heat up as more progress is made and more of these types of therapies are approved. In the meantime learn more about Luxturna’s approval here and more about Luxturna’s pricing and how Spark Therapeutics plans to offset the cost here.

Developments are also being made in the early detection of cancer says cnn.com. Scientists are progressing with the development of an experimental, non-invasive blood test that could detect as many as eight types of cancer including ovarian, liver, stomach, pancreas, esophageal, colorectal, lung, and breast. The blood test is called CancerSEEK and could cost less than $500 which is about the same or less than other screenings. While promising, the blood test is in the very early or conceptual phase and is not quite ready for widespread use, but the initial findings were positive enough to justify more research and testing. CancerSeek, which combines blood protein markers and DNA markers that are then analyzed with various cancer controls, is being called groundbreaking, but there are still many factors to be considered before the test can be relied on for accurate cancer screening. The hope is that, after further testing and development, CancerSeek will be used in the future to detect cancers before symptoms appear. You can find out more here.

A more effective way to kill cancer is being developed as reported by medicalnewstoday.com. The new method would block cancer cells from accessing glutamine, which is the main nutrient tumors need to grow and spread. Glutamine is an amino acid that sustains the synthesis of protein in healthy cells, but it also helps cancer cells to divide faster. In order to keep the cancer cells from accessing glutamine, researchers have used an experimental compound called V-9302 that acts as an inhibitor to a protein called ASCT2 which carries glutamine to cancer cells. The presence of V-9302 was able to diminish the growth of cancer cells, prevent them from spreading, and eventually kill them. The process, though complex and quite technical, is innovative and very promising. You can learn more about it here.

Then there is this from theguardian.com. Author Elizabeth Wurtzel shares her perspective about having cancer in her piece titled I have Cancer. Don’t Tell Me You’re Sorry. It is a well-done, whirlwind of a read and it is full of patient power. Enjoy it here.

Cervical Cancer Awareness Month Feature

January is National Cervical Health Awareness Month, so we wanted to shine a light on this disease. Nearly 13,000 women in the United States are diagnosed with cervical cancer each year, but the disease can be preventable with vaccination and appropriate screening (Pap and HPV tests). It also can be cured when found early and treated. Women should start getting screened regularly, starting at age 21.

Two tests help prevent cervical cancer or find it early:

  • The Pap test (or Pap smear) looks for precancers, which are cell changes on the cervix that might become cervical cancer if they are not treated appropriately.
  • The HPV test looks for the virus that can cause these cell changes.

Pap Test

The Pap test is recommended for women between ages 21 and 65, and can be done in a doctor’s office or clinic. Women should start getting Pap tests regularly at age 21. If your Pap test results are normal, your doctor may say you can wait three years until your next Pap test. If you are 30 years old or older, you may choose to have an HPV test along with the Pap test. Your doctor can perform both the Pap and HPV tests at the same time. If your test results are normal, your chance of getting cervical cancer in the next few years is very low. Your doctor may then say you can wait as long as five years for your next screening.

If you have a low income or do not have health insurance, you may be able to get a free or low-cost Pap test through CDC’s National Breast and Cervical Cancer Early Detection Program. Find out if you qualify.

HPV Vaccine

Get the HPV vaccine if you are in the age group for which it’s recommended. The HPV vaccine protects against the types of HPV that most often cause cervical, vaginal, and vulvar cancers. HPV can also cause cancers of the penis in men, and anal and head and neck cancers in both men and women.

The HPV vaccine is recommended for preteens (both boys and girls) aged 11 to 12 years, but can be given as early as age 9 and until age 26.

Make an appointment today for your or your child’s vaccination. If you don’t have insurance, or your insurance does not cover vaccines, CDC’s Vaccines for Children program may be able to help.

For a full list of awareness months please visit our Cancer Awareness Calendar 2018.

What Can You Do?

The U.S. Department of Health and Human Services suggests using this month to spread the word about important steps women can take to stay healthy.

Here are just a few ideas:

  • Encourage women to get their well-woman visit this year.
  • Let women know that most insurance plans must cover well-woman visits and cervical cancer screening. This means that, depending on their insurance, women can get these services at no cost to them.
  • Talk to parents about how important it is for their pre-teens to get the HPV vaccine. Both boys and girls need the vaccine.

How can I help spread the word?

We’ve made it easier for you to make a difference. This toolkit is full of ideas to help you take action today. For example:


Resources:

https://www.cdc.gov/cancer/dcpc/resources/features/cervicalcancer/index.htm

http://www.nccc-online.org/

https://www.cancer.org/latest-news/special-coverage/cervical-health-awareness-month.html

https://healthfinder.gov/NHO/JanuaryToolkit.aspx

6 Nutrition Tips to Protect Your Brain and Balance Your Mood

With 25 percent of adults and 10 percent of children experiencing mental illness each year and major depression burgeoning into a leading cause of disability around the world, it’s easy to feel stressed about the state of stress. However, recent research is revealing a new line of defense against mood disorders that’s a little bit different from the traditional approach of medication and therapy: the diet.

A growing body of data suggests our gut health directly influences brain development and mental health. It’s believed that the microorganisms residing in human guts, known as the microbiome, impact the generation and metabolization of neurotransmitters like mood-boosting serotonin and dopamine, along with other neuroactive chemicals.

Unfortunately, when people are experiencing mental illness or otherwise feeling down, they’re far more likely to reach for comfort foods that are high in fat, sugar, and refined carbohydrates than health food. But it turns out that comfort foods aren’t so comforting after all: Simple carbohydrates and processed foods have been shown to increase the risk of depression, while a diet rich in fruits, vegetables, and other whole foods seem to protect the brain.

So if you’re experiencing depression, anxiety, or other mood problems, and want to stop them before larger problems occur (or, if you just want to help prevent these issues from starting in the first place), how can you tailor your diet for a healthy brain?

  • Limit alcohol consumption. While it’s tempting to reach for a glass of wine after a tough day, heavy alcohol consumption can lead to addiction and actually exacerbate mood disorders by interfering with the body’s metabolization of tryptophan, an amino acid that’s critical in the production of serotonin.
  • Stick to complex carbohydrates. Simple carbohydrates like sugar, corn syrup, and refined grains cause blood sugar fluctuations that can lead to mood swings and brain fog. And while simple carbohydrates can provide a short-term serotonin boost, complex carbs like legumes, whole grains, and fibrous vegetables are much more effective at providing your brain lasting, stable serotonin.
  • Eat tryptophan. In order for carbohydrates to effectively boost serotonin, they need to be consumed alongside tryptophan. Tryptophan is an amino acid that gets converted into serotonin, and you’ll find it in proteins like turkey, duck, eggs, and beef.
  • Get your vitamins. Deficiencies of B12, folate, selenium, and vitamin D have all been linked to higher rates of mood disorders like depression. To make sure you’re getting enough of these important nutrients, consume plenty of seafood, lean meats, dairy, and eggs (B12, selenium, and vitamin D), and legumes, nuts, and dark leafy greens (folate). And spend plenty of time outdoors, even in the winter months, because sunlight is one of the best sources of vitamin D. Supplements can be a great tool, especially for vegetarians and vegans, but too much selenium and vitamin D can be toxic, so consult with your doctor before adding supplements to your diet.
  • Look for antioxidant-rich foods. Antioxidants have been connected to reduced cognitive decline and cancer risk, and evidence suggests that they can even help with moods. Deeply pigmented fruits and vegetables like berries, dark leafy greens, sweet potatoes, and carrots are all great sources of antioxidants, as are nuts, whole grains, legumes, and fish rich in omega-3 fatty acids.
  • Consume probiotics. Lactobacillus and bifidobacterium have been shown to reduce anxiety-like behavior in mice, and scientists believe the mood-enhancing benefits of these probiotic bacteria extend to humans. And while these beneficial bacteria may be difficult to pronounce, they’re easy to find. Look for fermented foods like yogurt, kefir, miso, tempeh, kimchi, sauerkraut, and kombucha that contain active cultures.

Eating well can go a long way toward promoting good mental health, whether you’re currently experiencing a mood disorder or just want to protect your cognition as you age. And while diet alone may not be enough to manage a mental illness, it’s an invaluable tool in the fight for a healthy, happy brain.


Image via Pixabay by Foundry

Patient Profile: Kirk Beck

Patient Profile

Kirk Beck

Prostate and Head and Neck Cancer

What is significant to Kirk Beck is not that he’s had cancer. He delivers his story with minimal detail about his diagnosis, his treatment, and the subsequent life-threatening complications he endured as casually as he might tell you what he had for breakfast. It’s not until his wife Kelly joins the conversation that the full impact of Kirk’s medical history becomes clear.

“He wouldn’t have lived to be 50,” says Kelly of the first time Kirk was diagnosed with cancer. They weren’t married then, but it’s not lost on Kelly that their marriage never would have happened if he hadn’t survived. “It was caught very early and he was lucky,” she says. What’s lucky is that Kirk’s prostate cancer was detected at all. It was the mid-90s and he was 44, much too young to have a prostate screening in those days, but Kirk had a friend with the disease so during a routine physical he insisted, despite his doctor’s protest, that he get tested.

That test ultimately resulted in his diagnosis and a radical prostatectomy. Through the help of his brother, a physician, he sought treatment at Johns Hopkins Hospital where the surgery was done using the “nerve-sparing” technique — which helped prevent side effects such as urinary incontinence and sexual dysfunction. The surgery was a success, the cancer hadn’t metastasized, and Kirk didn’t require chemotherapy or radiation. “I got operated on and came home,” he says and in the 20 plus years since he’s had no recurrence or side effects.

He did, however, get another cancer diagnosis. This time he had tonsil cancer in October 2005. Within days his tonsil became extremely swollen. He had surgery the next month, followed by chemotherapy and radiation which was accompanied by a drug designed to protect his salivary glands from the radiation. This time there were complications. By New Year’s Eve he was back in the hospital and then again, after his second round of chemo, at the end of January 2006. He had what he calls episodes of extreme pain. “It was excruciating. Unbearable,” he says.

What he had was a blood clot, portal vein thrombosis, which is a rare condition to which he had a very rare reaction, and his small intestine had begun to die. He was unable to digest food and was vomiting a lot. His body had created what is known as collateral veins which were enough to keep him alive, but not enough to prevent damage to his small intestine. The hospital told Kelly that there was nothing more they could do. He was too high risk for surgery, they said. She was advised to contact hospice care.

“If I had listened to them, he would be dead. I just knew deep down this wasn’t supposed to be happening this way,” says Kelly, who instead of calling hospice called Kirk’s brother, the doctor, and got Kirk back to Johns Hopkins where they were able to save his life.

Of course, it wasn’t that simple. Kirk required intensive and careful treatment of his clot, continued radiation for his cancer treatment, and surgery to remove the damaged area of his small intestine. The process was scary and daunting and full of unpleasant details, but that is not what Kirk chooses to focus on. “If you look at it properly, it’s a gift. Not a penalty. Not a punishment. It’s an opportunity to reconsider your perspective on life,” says Kirk.

“It was a great experience. It might be strange to say, but its what I believe. It’s not something I want to go through again, but it was priceless. It changed my entire life and made me a lot more appreciative.” That is what is significant to Kirk. Not having cancer twice. Not having a life-threatening blood clot, but the living that he has done and the opportunity that these experiences have given him to help others. “I’ve been able to share my story and offer help to others that I couldn’t have offered without the experience. People knew I was speaking the truth. There’s no fiction in it. I try to give people a real and truthful perspective and that is invaluable.”

Kelly has a similar take away. She says the experience afforded her a new perspective, but also made her a strong advocate for patient empowerment. “Don’t always accept what they say. Be an advocate,” she says. “If you have a bad feeling and you are not getting answers, go elsewhere. There are so many places you can go for information. Take advantage of every opportunity. Having a good, strong advocate will save your life.”

In addition to his two bouts with cancer, Kirk has had a number of pretty considerable medical issues over the course of his 67 years, but he’s never let any of it slow him down. “Everyone has their own journey and also their own destination,” says Kirk who believes that a positive attitude is crucial to recovery. “You just can’t allow yourself to be destroyed by these situations.”

How to Stay Safe When Taking Black Box Drugs

If you’re a citizen of the U.S, and especially an elderly citizen, you’ve likely been prescribed a “black box” drug sometime in your life. 75% of adults 50+ take at least one prescription medication on a daily basis, based on an online survey conducted by the AARP. But black box drugs are more serious than your average prescription medication — these are drugs with serious and often deadly adverse side effects. This is the harshest warning issued by the Food and Drug Administration (FDA), but it doesn’t stop doctors from prescribing these drugs to millions of Americans every year.

You’ve likely heard of Xanax, but most people don’t know that this is a black box drug. The official FDA warning that accompanies this drug states the increased risk of respiratory problems along with sedation. It can also be highly addictive. And with over 48 million Xanax prescriptions in the U.S. alone, this is a major risk to the health of our peers.

Some black box warnings are even more dire than Xanax. The blood thinner Pradaxa (dabigatran) has been linked to severe bleeding incidents. This drug is less commonly used than Xanax, but it carries the same level of black box warning. It’s caused so much damage to the health of its consumers that a $650 million settlement fund was created by the drug manufacturer to compensate all of its victims.

So what does this all mean for you? It’s imperative to read over the warnings that accompany your prescription drugs, and discuss the side effects with your doctor. Tell them all of the other medications you’re taking, along with any supplements. Doing so may be tedious, but it’s worth it to avoid painful and severe side effects like internal bleeding.


Author bio: Cal Cook works at ConsumerSafety.org, an online resource dedicated to informing and empowering consumers.

(Self)Knowledge = (Em)Power(ment)

“Promise me you’ll always remember: You’re braver than you believe, and stronger than you seem, and smarter than you think.” – A. A. Milne

Finding yourself sitting on an exam table, or lying in a hospital bed, can be scary. Annual well-check visits to your primary care doc are one thing, but if one of those visits starts you on a journey through the maze of treating a diagnosis of cancer, or Parkinson’s, or [insert name of life-changing condition here], you find yourself feeling pretty overwhelmed.

My mantra has long been “be your own best advocate.” I learned this from my parents, who were e-patients long before that term was even coined. When I started my own cancer treatment journey ten years ago, I sprang into self-advocacy mode even before I had a confirmed diagnosis. I asked questions, worked to understand the answers, pressed for clarification when I needed it, on a “lather, rinse, repeat” cycle throughout the months between mammogram the end of active treatment; that process continues to today.

Since I just got my 10 Year Cancer-versary mammogram today (January 11, 2018), I figured my January PEN post would be a great place to share some of my how-to on being your own best healthcare advocate.

Let’s start with the basics, questions you can ask in any healthcare setting when a nurse or doctor outlines an issue, and a treatment plan for that issue, with you. This is straight from the Institute for Healthcare Improvement and the National Patient Safety Foundation – they call it Ask Me 3:

  1. What is my main problem?
  2. What do I need to do?
  3. Why is it important for me to do this?

This will work for anything from an upper respiratory infection to a badly sprained ankle to a hypertension diagnosis. It helps you learn more about the issue at hand, and opens up a dialogue where you can add information about your medical history, your family history, your preferences about medical treatment, and any concerns you have about treatment outcomes and side effects. e-Patient Health Literacy 101, if you will. The Ask Me 3 program link above includes some really superb health literacy materials, too. I encourage you to read through them, and to share them with your family and your community. I’m all about “the more you know” in healthcare.

If you want some e-Patient Health Literacy 201 questions to take to your next doctor’s appointment, I put together a handout I call the Must Ask List. I use this one-sheet constantly, at healthcare events where I’m invited to speak and in webinars where I share my thinking on patient engagement, health literacy, and health system innovation. Please feel free to use and share it – if you have questions you’d like to see added to it, let me know.

It takes a village to change the world. In the global village working to improve human health, it’s critical that we all share what we’ve learned, and look to learn from others with expertise in both the getting, and the giving, of medical care.

Doctors + patients x knowledge sharing = health and healthcare system improvement at light speed.

That’s my formula, and I’m sticking to it!

The Best of 2017

As 2018 begins, we would like to take a moment to highlight the top 10 most popular posts from 2017 and to thank the people who contributed to the popularity of these posts. We cannot thank the authors enough that have contributed, such as Marie Ennis-O’Connor and Jennifer Lessinger. Your efforts to Patient Empowerment Network are greatly appreciated.

How to Read and Understand A Scientific Paper

This guide will teach you how to read a scientific research paper so that you can come to an informed opinion on the latest research.

Presentation Tips for Patient Advocates: Developing Effective Speaking Skills

As a patient advocate you may be invited to speak in public about your cause, and while some of you will relish this opportunity, many others will find it daunting. If you follow this step-by-step guide it will help you to help you become a more confident, prepared, and persuasive speaker.

How to Weigh Up the Benefits and Risks of Treatment…And Why It’s Important That You Do

This blog explores the question, “Do clinicians have accurate expectations of the benefits and harms of treatments and screening tests?”

Mapping the Patient Information Journey

Health information needs to change as you move along the patient pathway and research has shown that access to the right information at the right time delivered in the right way leads to an increase in a patient’s desire and ability to have a more active role in decision-making.

How to Cope With Cancer-Related Fatigue

Marie describes cancer-related fatigue (CRF) and six different ways for patients to manage it.

Patient Profile: Elizabeth Carswell

Elizabeth Carswell’s story of AML and how her child keeps her going is shared in this patient profile.

What Not to Say When You Don’t Know What to Say

Inspired by an Empowered #patientchat, Jennifer Lessinger put together a list of the most common comments patients hear and why you shouldn’t say them.

The Advocate’s Guide to Reporting Live from Conferences and Events

Marie shares her guidelines and tips for preparing to report live from your next conference or event.

The DisCONNECT OF CANCER

This blog discusses how a diagnosis and cancer can affect your relationships.

Patient Advocacy: Ten Tactics for Mastering Social Media Success

Here are ten tactics you can use to master social media, make your cause better known, and grow your online influence.

How To Boost Your Online Advocacy Through Blogging

Are you looking for a way to boost your advocacy activities online? One of the best ways to do this is to create a blog. Many patients blog about their illness as a way to advocate for better treatment and care and to provide guidance and support for other patients. Blogging shows your commitment and passion for your cause.  Because a blog is interactive (by allowing readers to post comments) it is also an extremely effective way to build a community and engage more people in your cause. If creating a blog is part of your plans for 2018, but you are not quite sure where to start, this step-by-step guide will get up and running in no time at all.

Step 1 Choose a Blogging Platform            

The first step is to choose your blogging software. Free blogging platforms are designed to be easy to use with pre-existing templates which you can personalize. Popular platforms include Blogger, Tumblr and WordPress. I use a WordPress site for my blog Journeying Beyond Breast Cancer.  The free version at WordPress.com is a good option if you want to try out blogging with little or no financial outlay. If however, you would like more functionality and the freedom to host your blog yourself, then you should choose WordPress.org.  I will focus on setting up a WordPress blog throughout this guide.

Step 2 Choose a Domain Name

Your domain name (also known as your URL) is your address on the web. Choose a domain name that is short, memorable and descriptive.  If you choose the free version of WordPress, your domain name will look something like this: yourname.wordpress.com. If you wish to omit ‘WordPress’ in the url, you have an option to pay an annual premium which costs around $18.

Step 3 Pick a Web Host

Web hosting is where your website lives on the internet. Every online site needs web hosting. If you choose WordPress.com your blog will automatically be hosted by WordPress.  If you decide to go with WordPress.org you will have to purchase hosting with a separate hosting company. There are many hosting companies to choose from, but the only hosting service officially recommended by WordPress is BlueHost.

Step 4 Install Your Blog

If you have chosen the free version of WordPress your blog will be installed automatically.  If you have purchased a hosting account, your provider will walk you through the steps needed to get your WordPress blog up and running.

Step 5 Configure Your Blog Settings

Now it’s time to set your blog’s title, tagline, language and visibility options.

Go to the General Settings of your WordPress dashboard.

The first setting you will see is Site Title. Your site title can be anything you’d like – it doesn’t have to be the same as your blog’s URL or your username.

Tagline is next and is a short description to describe what your blog is about. For example, the tagline of my blog is “Making Sense of The Breast Cancer Experience Together”.  Until you personalize your tagline the default is displayed as follows:

The Language option lets you select the language you wish to use on your blog.

Finally, the Privacy settings control your site’s visibility. Set this to Public if you want to be found by search engines.

Step 6 Design Your Blog

Designing your blog is the fun part and it starts with selecting a theme. WordPress has a wide range of paid and free themes for you to choose from. You can sort themes by filters like “popular”, “latest”, “featured” as well as several other filters. New themes are always being added so you can change your theme as often as you like. Clicking on a theme’s thumbnail will show you a preview of that theme so you can see how it will look before you activate it.

You can customize your chosen theme by adding your own header image if you wish, for example a picture of you or the logo of your organization.

Once you have selected your WordPress theme, you are now ready to create your first blog post.

Step 7 Creating Your First Blog Post

To write a blog post, click on the Posts » Add New menu in your WordPress dashboard. Enter your post title in the upper field and enter your post body content in the main post editing box below it.

Click on Add Media to include an image, document, audio or video file in your post.

Adding Categories and Tags to your posts will help you organize your blog posts. Categories are the general topic area you are writing about. Readers can browse specific categories to see all posts in the category. Tags refer to micro-categories for your blog. Posts with similar tags are linked together when a reader clicks one of the tags.  Here is a sample of some of the most commonly used tags on my blog.

The Preview button allows you to view your post before you publish it. You can save a draft of your post and come back later to edit or add more content to it. When you are happy with how your post is written, you can publish it either straight away, or you can schedule it for publication on a future time or date. You can also change the publish date to a date in the past to back-date posts.

How long should a blog post be?

There’s much debate on whether short or long blog posts work better. If you want your blog to rank on Google, then longer is better. This is because longer articles will contain more keywords, headings, links, and pictures. Aim for something between 1000 to 1500 words, but at the very least, your blog posts should be more than 300 words for Google to rank it. Just make sure that posts are easy to read by breaking up long text with headings, bullet points, short paragraphs and images.

A note on Posts vs Pages

Often WordPress beginners get confused between Posts and Pages. Posts are entries that display in reverse order on your blog. As you add more posts, older entries are moved further down and become less visible. Pages (such as About or Contact Me pages) are static and remain visible to readers.  To create a new page, go to Page -> Add New in your dashboard.

 Step 8 Attract Readers to Your Blog

Don’t get disheartened if visitors don’t flock to your blog right away. It takes time to build your readership, but there are a few things you can do to increase your blog’s visibility and attract more readers.

1. Post your content on social media

The best way to attract more readers is to post your blog content on social media. However don’t just post a link to your latest post – include images, pose a question, or add a startling statistic that will encourage readers to click on your link to find out more.

2. Make it easy to share your blog

To expand your blog’s reach on social media, encourage readers to share your posts after they have read them. Make it easy for them by adding highly visible social sharing buttons to all your posts.

3. Hook your readers with compelling headlines

Your headline is the first impression you make on a prospective reader. Just as we judge a book by its cover, we often judge a blog post by its title.  It’s fine to start writing your post with a working title, but when you have finished writing it, go back and spend some time creating a headline that will entice readers to click through and read the post. For tips on creating compelling headlines click here.

4. Use keywords in your blog posts

If you want to attract new readers to your blog, you want to make sure they’ll be able to find you when they search online.  It’s important therefore to include keywords in your content if you want to rank higher for particular search terms.

 5. Comment on other blogs

Most blogs have comment sections which allow you to comment with your blog’s url. Leaving a comment which adds to the conversation is a good way to interest others to click through to your blog.

6. Write a guest post for an established blog

 Offer to write a guest post for a blogger with an established readership. Include your blog’s url in your guest post.  Search engines like Google index blogs when they find them mentioned (in the form of links) on sites they have already ranked. The more high-quality links your blog has, the higher Google will rank you.

7. Maintain a consistent posting schedule

You need to post regularly to stay in front of your audience’s eyes and grow your readership.  Maintaining a regular publishing schedule means you should pace your posts so that there is something new to read on a consistent basis.

To wrap up, blogging is an extremely effective way to show people what you are passionate about and committed to. If you want to boost your online presence and grow your advocacy in 2018, starting a blog in the New Year is a great place to start.

Happy Blogging!

 Do you blog? Do you have any other tips to offer novice bloggers? Please share your tips and your blog’s url in the comments below.