Care Partner Resources Blog Archives

Confused About Immunotherapy and Its Side Effects? You Aren’t Alone

“You don’t look like you have cancer.”

More than one patient undergoing immunotherapy to treat cancer has reported hearing statements like that. Immunotherapy is one of the recent advances in cancer treatment that belie the stereotypes about the effects of cancer treatment. 

The side effects of immunotherapy are different from those associated with chemotherapy and radiation. However, that does not mean immunotherapy does not have side effects. Patients and care partners need to be aware of these potential side effects and to be vigilant in addressing them with their oncologists because they can signal more serious complications if left untreated.

What is Immunotherapy?

Despite the increase of immunotherapy treatment options in recent years and considerable media attention paid to advancements in this field, there remains confusion about immunotherapy and its side effects. Many cancer patients are unaware of whether immunotherapy treatments are available for their specific diagnosis. Others don’t know that genetic profiling of their tumors is usually required to determine if immunotherapy is an option and not all treatment centers routinely conduct genetic profiles of tumors. A  survey by The Cancer Support Community found that the majority of patients who received immunotherapy knew little to nothing about it prior to treatment and were unfamiliar with what to expect.

Immunotherapy works by manipulating the patient’s immune system to attack cancer cells. It is perceived as gentler and more natural than chemotherapy and radiation, without the same destructive effect on the body’s healthy tissues.  This, combined with a lack of prior understanding of immunotherapy, can lead patients and care partners ill-prepared for possible side effects.

Furthermore, immunotherapy is a category of therapies, not a single type of treatment. There are a variety of immunotherapy drugs, most of which are administered via infusion.  Side effects will vary by drug, the cancer and its location, treatment dose, and the patient’s overall health.

The following are the most common types of immunotherapy.

  • Checkpoint inhibitors use drugs to block proteins in the patient’s immune system that would otherwise restrain the immune system, often referred to as taking the “brakes” off the immune system.
  • CAR-T therapy modifies the patient’s T-cells in a lab to enhance their ability to bind to cancer cells and attack and kill them.
  • Oncolytic virus therapy uses genetically modified viruses to kill cancer cells.
  • Another therapy uses cytokines (small proteins that carry messages between cells) to stimulate the immune cells to attack cancer.

Immunotherapy can be part of combination therapy. It might be combined with chemotherapy. It might be used to shrink a tumor that is then surgically removed.  Or multiple immunotherapy drugs might be used simultaneously.

What Are The Side Effects?

With immunotherapies, side effects typically occur when the immune system gets too revved up from the treatment. The most common side effects for immunotherapy treatments are fatigue, headache, and fever with flu-like symptoms. Some people also experience general inflammation often in the form of a rash. Many melanoma patients report blotchy skin discoloration, called vitiligo, during treatment. These milder side effects can usually be managed with over-the-counter remedies and adjustments to daily activities.

For checkpoint inhibitors, the fastest growing segment of immunotherapy treatments, mild side effects occur in 30% – 50% of patients. Serious side effects typically occur in less than 5% of patients. (See “Understanding Immunotherapy Side Effects” from the National Comprehensive Cancer Network and the American Society of Clinical Oncology.)

Less common side effects are blisters, joint pain, thyroid inflammation, and colitis (inflamed colon resulting in diarrhea with cramping). Some patients who receive CAR T-cell therapy develop a condition known as cytokine release syndrome, which causes fever, elevated heart rate, low blood pressure, and rash. 

In rare cases, immunotherapy has resulted in lung inflammation, hepatitis, inflammation of the pituitary, and detrimental effects on the nervous and endocrine systems. In most cases, the conditions clear up when treatment ends.  However, there have been outcomes in which immunotherapy caused diabetes or tuberculosis.

“Overall there are fewer side effects [with immunotherapy],” explained Dr. Justin Gainor, a lung and esophageal cancer specialist at Mass General during an Immunotherapy Patient Summit hosted by the Cancer Research Institute. “But the immune system can affect anything from the top of the head down to the toes. Any organ has the potential to be affected.”

As the application of immunotherapy has expanded, so has our understanding of the potential side effects. Like most medical treatments, how one person responds to immunotherapy can be different from another even when the cancer diagnosis and drug therapy are the same.

The essential thing patients and care partners need to know about side effects is they should always be reported to their oncologist or nurse oncologist.

Why Patients Should Talk to Their Provider About Immunotherapy Side Effects

Because immunotherapy has created newer therapy options, there isn’t the volume of experiences as with older treatments. The infinite number of variables that patients provide once a treatment moves beyond clinical trials and into the general patient population generate more diverse outcomes.  And, as most therapies are less than 10 years old, there hasn’t been an opportunity to study the long-term effect of these therapies. This is why oncologists advise patients and their caregivers to be extra vigilant in noting any changes experienced during and after treatment.

Many side effects are easy to treat but medical providers want patients to be forthcoming in discussing any and all side effects. This is in part to improve understanding of side effects, but also because a mild cough or a case of diarrhea might be harbingers of a more systemic issue that will grow worse if left untreated.

Patients should not be hesitant to discuss side effects because they fear they will be taken off immunotherapy.  Sometimes a pause in treatment might be necessary, but the earlier the oncologist is made aware of a side effect, the less likely that will be necessary.

In addition, patients undergoing immunotherapy should always take the name(s) of their immunotherapy drugs and the name of their oncologist when seeing medical professionals outside of their cancer treatment team. This is especially important when visiting the ER.  Because immunotherapy drugs are newer and highly targeted to certain cancers, many medical professionals remain unfamiliar with drug interactions and treating related side effects.

Immunotherapy On The Rise

Immunotherapy treatments have resulted in reports of remission in cases that would’ve been deemed hopeless just five or 10 years ago.  The Federal Drug Administration (FDA) has approved various immunotherapy treatments for melanoma, lung cancer, head and neck cancer, bladder cancer, cervical cancer, liver cancer, stomach cancer, lymphoma, breast cancer, and most recently bladder cancer.  (Here is a list of  immunotherapies by cancer type from the Cancer Research Institute.)

“It’s revolutionized how we treat our patients,” says Dr. Gainor of Mass General about immunotherapy’s impact on lung and esophageal cancer.

Advances in immunotherapy research and trials continue to generate optimism and excitement. A clinical study in Houston is looking at using immunotherapy to prevent a recurrence. Researchers in Britain recently announced a discovery that might lead to advances in immunotherapy treatments to a much broader array of cancers.

While there is excitement around the field of immunotherapy and it has resulted in unprecedented success in treating some previously hard-to-treat cancers, it remains an option for a minority of cancer diagnoses.  It works best on solid tumors with more mutations, often referred to as having a high-mutational load or microsatellite instability (MSI) high. And it is not universally successful for every patient.

With hundreds of clinical trials involving immunotherapy alone or in combination with other therapies, it is certain more treatment options are on the horizon. As more therapies are developed and more patients with a greater variety of conditions undergo immunotherapy, we will also increase our understanding of potential side effects.

Side effects should not dissuade patients and care partners from considering immunotherapy if it is available or from advocating for genetic tests to deteimine if it is an option. Many patients undergoing immunotherapy have previously undergone chemotherapy and report that the side effects are fewer and milder by comparison.  The important thing is that patients and their partners know what to expect and communicate with their treatment team.

If the next 10 years in immunotherapy research and development are anything link eth elast 10, we can expect more exciting advancements in the battle against cancer. For more perspective on what’s ahead for immunotherapy see the Cancer Research Institute’s article: Cancer Immunotherapy in 2020 and Beyond.

Understanding Clinical Trials: A Jargon Buster Guide

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

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

Adverse Effects (AE)

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

Arm

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

Bias

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

Blinding

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

Comparator

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

Completed

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

Control

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

Efficacy

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

Eligibility Criteria/ Inclusion and Exclusion Criteria

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

Follow-up

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

Informed Consent

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

Intervention

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

Investigator

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

Multicentre Trial

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

Number needed to treat (NNT)

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

Outcome Measures

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

Phase I, II, III and IV Studies

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

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

Placebo

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

Population

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

Protocol

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

Randomized Controlled Trial (RCT)

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

Reliability

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

Sample

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

Subjects

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

Trial Site

The location where trial-related activities are conducted.


References

The Canadian Institutes of Health Research (CIHR)

TROG Cancer Research

ICH.org

NICE

Further Resources

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

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

ClinicalTrials.gov database of privately and publicly funded clinical studies

CenterWatch Clinical Trials Listing

Complete Guide To Mindfulness

Suja Johnkutty Hi there ! I’m Suja Johnkutty, MD a conscientious mom and neurologist . My one simple goal is to provide you honest, practical, simple action steps to experience better relaxation in your life. betterrelaxation.com

Medication Maintenance Tips for Caregivers

Managing medications can be difficult to do, especially if you’re a senior caregiver. Helping someone else remember to take medications on time and work to find the right balance for them can seem like a daunting task. Thankfully, we’ve got a list of tips and tricks to help make things flow more smoothly.

Make Sure Providers Are Aware Of Vitamins And Supplements

Medical providers should be aware of any vitamins and supplements a person is taking. Regardless of how natural they are, they can interfere with medications and other treatments. For example, someone on blood thinners should not be taking a supplement with vitamin K. Most blood thinners work by inhibiting the production of this vitamin in the body. Taking a vitamin K supplement can negate the work of blood thinners.

Instructions

Make sure to go over medication instructions with the senior you’re caring for. If they are able to, they should know the names of each medication along with dosages and what times to take them. It doesn’t hurt to type up instructions about medications so that all information is in one place and easy to access. Consider adding in what side effects they should seek help for. That can serve as a list for caregivers and seniors to check on in case of adverse events.

Alarms

Set alarms to remind seniors to take their medications. There are many options to choose from. Smartphones allow you to set up reminders with different sounds each time which can help people differentiate between medication doses and other alerts. Electronic personal assistants like Alexa or Google Home can easily be used for reminders as well. If the senior you’re caring for struggles with newer technology, consider a few alarm clocks around the home.

Keep A List

Keeping a list of medications can help seniors and caregivers alike remember what medications are due at what time. Lists that have both a visual of what the medications look like and allow people to check off a medication dose can be useful tools. If you’re going with this kind of list, make sure that you have multiple copies. Placing one next to a pill organizer and another on the fridge can help remind people to take medication before they’ve even missed a dose.

Smartphone apps can also be helpful in tracking this information.

Follow Up

It’s important not to just set alarms or reminders, but check in to ensure that someone has taken their medication. It can be easy to turn off an alarm and still forget to take medication as scheduled. Following up with the senior in your life can remind them that they didn’t take their most recent dose.

Store Medications Properly

Most medications do best when stored between 68 and 77 degrees Fahrenheit. Additionally, many of them need to avoid humidity, direct sunlight and more. Medications should not be stored in vehicles, on windowsills or other sunny and warm spots or even in the bathroom. Consider storing them in a cool, dry space in the kitchen or living space.

When medications aren’t stored properly, it can affect their potency and make them potentially dangerous. If you’re concerned that your senior’s medications have been affected, here’s what you need to watch out for:

  • Odd smells
  • Discolored pills, tablets and injections
  • Cracked or crumbled pills
  • Pills and tablets that are stuck together
  • Creams and ointments that show separation
  • Cloudy injections

If you see these signs, contact your senior’s pharmacist as soon as possible.

Sort Medications Into Pill Organizers

Set aside time each week to go through the medication your senior takes and place them into pill organizers. These can make it easier to remember to take medications as prescribed or even transport them while traveling. Some organizers can remind people to take their medications and even alert others that a dose has been missed.

Make Sure All Caregivers Know About Medications

A sure way to have seniors miss their medication doses is to have senior caregivers who aren’t on the same page. Without everyone being in the know, it becomes increasingly difficult to set reminders and follow up with seniors about medication doses.

Plan Ahead For Refill Needs

Refills may come up on days where a senior is alone. When that’s the case, they may forget or be unable to pick up their refilled medications. Refills may even be due when someone is planning to be out of town. Make sure to plan ahead adequately for refills and work with a person’s pharmacist.

Consider Compounding Medications If Needed

Compounding is a process where medication is tailored to a person’s specific needs. This can help remove any dyes a patient is allergic to or turn a pill into liquid for those who struggle with swallowing pills.

Get Tips from A Medical Provider

When methods to help your senior aren’t working as well as you had hoped, take some time to check in with their medical providers. Nurses have amassed a wealth of information on improving their patients’ quality of life. They are likely to have some ideas on how to make managing medications more effective.

Always Communicate With Family Members

Whatever steps you take to maintain a senior’s medication schedule, make sure that you’re communicating any difficulties with the senior’s loved ones. Family should also always be aware of any medication changes. When so many seniors rely on a variety of paid and family caregivers, it’s incredibly important for everyone to be in the loop on the storage, administration and organization of all medications, vitamins and supplements.

Changing the Caregivers’ Refrain

I’ve spent the past two years since my Mom’s death wondering if I could have — no, I’ll be totally honest with you — wondering if I should have done more. If only I had looked into clinical trials while she still met the inclusion criteria. If only I had sought out and demanded that she see an expert sooner. If only I had been more patient, more present, more supportive. All of this because no matter how much you give of yourself as a caregiver, you’re always left feeling like you could, no, should have done more. Guilt, fear, exhaustion and stress are the refrain we caregivers hear, on continuous repeat, in our heads.

But what if we could change this? What if we, collectively as a community, could provide the support and encouragement that caregivers need? What if we worked together to change the refrain they (we) hear to something more positive?

My Mom, Shirley, was diagnosed with Inclusion Body Myositis (IBM) in 2008.  IBM is a relatively rare inflammatory muscle disease characterized by progressive muscle weakness and wasting. Her diagnosis came after years of our family telling her that the weakness she felt and her frequent falls could easily be solved if she just exercised more often.

Towards the end of her life she was unable to leave the house or even get out of bed. Her muscles had wasted to a point that she couldn’t move her arms or legs. She couldn’t even swallow. My Dad and I took care of her at home until she was admitted to hospice and died shortly thereafter.

The Family Caregiver Alliance reports that 34.2 million Americans have or are providing (unpaid/family) care to an adult aged 50 years or older[1].  48 percent of caregivers are between the ages of 18-49. This means that most caregivers are starting or already have families of their own to care for, careers to build and tend to, and other commitments beyond their role of caregiver.

Being a caregiver was hard. Literally, the hardest thing I’ve ever done. But looking back on it, I realize just how lucky I was. I had a committed co-caregiver in my Dad. I have an incredibly supportive husband who, without hesitation, agreed to move closer to my parents.  I also have a great support system of friends and colleagues. Not all caregivers are as lucky. Caregivers report feelings of isolation, chronic stress, depression and symptoms of declining health. Many caregivers have no one to turn to for support and encouragement. They have no one to “cover” for them when they need a break.  No one to talk to when they feel that they just can’t continue on another day.

This is why my organization, Patient Empowerment Network, is trying to grow the Empowered Patient Facebook Group. We want it to be a safe, supportive place where patients and caregivers can find the help they need, even if it’s just to swap stories or learn a new “caregiver hack” to make life a little easier. We want to work with you and for you to build a community of empowered patients and caregivers.

A dear friend once told me that we do the best we can in the moment we’re in. Maybe that’s a cop out but, having been a caregiver, I believe it’s true. The trick is reminding ourselves and each other that it’s true. I encourage you to use this community to help share that reminder and, hopefully, change the caregivers’ refrain.


[1] [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.]

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.

Caregiver Profile: Heather Cimino

In recognition of National Family Caregivers Month, we are using this month’s Patient Profile to profile a caregiver. You can learn more information about National Family Caregivers Month here.

Heather Cimino’s father died in 2008. He had mesothelioma and lived only six weeks after his diagnosis. So, when Heather’s mom was diagnosed with colorectal cancer in April 2015, Heather became her caregiver. Fortunately, her mom lives just down the street so Heather can check on her regularly. “I sit with her on chemo days, visit with her, and make sure she has food,” she says. “I’m pretty experienced in this now.”

You see, this isn’t Heather’s first go around as a caregiver. Her first began in January 2012 while she was in the operating room undergoing a Caesarean section. She and her husband Nick were anticipating the arrival of their third son. Except, Heather says Nick wasn’t there. He was in the ER with a possible blood clot in his leg. Nick had been complaining of leg pain during her pregnancy, but Nick and Heather, who had been married seven years, were busy people. They had two sons under the age of five, another on the way, and both worked and attended school full time. He’d been told by doctors that the pain was probably just residual from a long-ago injury so Nick ignored it until that day when he couldn’t ignore it anymore.

The pain wasn’t from a clot. It was a tumor and, within a week, Nick was diagnosed with High Grade Spindle Cell Sarcoma. Treatment began immediately and, for awhile, things were okay. Heather managed to care for her three sons and Nick, who was confined to the first floor of their home: the tumor in his leg broke the bone so he required a walker to get around. Heather was even able to return to work some of the time so that they could keep their insurance. Despite the surgeries and blood transfusions and hospital stays and travel to different treatment facilities, Heather and Nick wanted to provide a sense of order for their boys. “We tried to make life as normal as possible,” says Heather who organized Nick’s pill schedule around her breastfeeding schedule. After eight rounds of chemotherapy and then radiation five days a week for seven weeks, Nick’s scans were good. “But then,” says Heather, “the tumors sprouted up and ten months in, he was terminal.”

Nick and Heather, who both had medical backgrounds, looked for any possible hope. “We would sit up all night researching,” she says, “but there was no good outcome.” They went to New York and tried a different chemo treatment, they reached out to facilities all over from Texas to Europe but nothing worked. So, they scheduled family pictures and made sure to get lots of photos of Nick with his sons.

Nick died in May 2013. He was 31 years old. Their boys were 1, 3 and 6 years old and Heather, who had not slept for more than two hours at a time since that day in January 2012, had no time to grieve. “It’s all a blur,” she says looking back. “I was so worried about the kids.” She put the two older boys in an art therapy class and found a church that embraced her family and offered her support. “It was like we started a whole new life,” she says.

Like many caregivers, Heather didn’t have time to think about her role as caregiver, she simply took it on and did what had to be done and it wasn’t always easy. “When Nick was sick he yelled at me a lot,” she says. At first, she was surprised by the behavior from her mild-mannered, soft-spoken husband, but one of his doctors told her not to take it personally. Sometimes the medication can cause the behavior, but so can the emotion. Heather equates it to a child who has to hold in his fears and angers all day in front of others and then lashes out when he feels safe.

While Heather would like to advise other caregivers to take care of themselves, she says it’s just not likely to happen. There’s no time and even when people offered to help, she never wanted to leave Nick’s side. But, she did take some advice from another caregiver. “She told me, ‘Smell your person, touch them, look at them, pick something to focus on so you will remember it’,” says Heather. “It will go so fast, so take the moment.” Heather says she is grateful for that advice. “Even now I can close my eyes and I can see the freckle he had between his brow.”

Remembering the moments keeps Nick’s memory alive.“He’s always there,” she says. “It doesn’t seem like it’s been that long, but it has.” The boys are 11, 8 and 5 now and all in school. Though, she is moving forward carefully so as not to overwhelm her sons, Heather has begun a relationship with a man she describes as very patient. And, of course, she’s caring for her mom. “We just keep trucking through,” she says.

Fact Checking 101: Health Literacy in Real Time

There’s a medical miracle every day, if you believe headlines on popular media sites. If you just read those headlines, cancer is cured daily, as are hepatitis C, and a host of neurological conditions. Dive into the stories, though, and you’ll all too often find the “in mice” red flag, meaning that scientific experiments have indicated that mice are having terrific outcomes from whatever substance is being touted. Humans? Not so much.

Information flows at the speed of life – thank you, Internet – but information does not always equal factual truth. Which is where fact checking comes in, and what I’ll be offering tips on here. As a journalist, I’ve hunted down confirmations on stories for years – here’s a quick primer on doing it for your own health/science literacy building.

  • Snopes.com: this site is the granddaddy of online myth busting. They have a dedicated channel for health news, which is definitely a good first stop to fact check a headline touting a “cure” for an illness or condition.
  • Sense About Science USA: the US arm of the UK-based Sense About Science and AllTrials, this site takes a deep dive into advocacy and literacy building for both the public, and professionals, around medical science. They’re in the process of creating an AllAccess Patient Guide on clinical trial participation, and transparency in reporting on all trials, which will be published in the fall of this year (2017).
  • Health News Review: the editors and reviewers behind this site are professional healthcare journalists dedicated to reading and scoring the reporting on health science in major media. I think of them as Politifact For Healthcare – they don’t issue “pants on fire” or “Pinocchio” warnings, but their 5-star review system is rigorous, and great reading.
  • FactCheck.org and FlackCheck.org: these sites assess news stories and sources in many categories, from politics to science to health policy. They’re produced by the Annenberg Public Policy Center at the University of Pennsylvania, and are great resources for fact checking in all news categories, not just science.
  • Retraction Watch: this is in the Super Science Nerd Journalist zone, covering the retraction of scientific papers around the world. There’s an old news adage about corrections being buried deep beneath the front page – that rule goes double in science publishing. A paper is published, and makes big headlines. If it’s retracted weeks/months/years later, there’s seldom a screaming headline announcing the retraction, leaving the untruth out there to be misunderstood and often misused.

Building your own health and science literacy is a process. Reading the latest medical science news is a starting point, but you have to add fact checking as a critical part of your learning curve. Then use the “see one, do one, teach one” method to help your friends and family build their health literacy, teaching them how to find and fact check the science news that matters – that’s how we all build healthy, science-literate communities.

How to Read and Understand a Scientific Paper

In a previous article, How to Read Beyond the Headline: 9 Essential Questions to Evaluate Medical News, I recommended you should always try to read an original study (if cited) to evaluate the information presented. In this follow-on article, you will learn how to read a scientific research paper so that you can come to an informed opinion on the latest research in your field of interest.  Understanding research literature is an important skill for patient advocates, and as with any skill, it can be learned with practice and time.

Let’s start by looking at what exactly we mean by the term “scientific paper”. Scientific papers are written reports describing original research findings. They are published in peer reviewed journals, which means they have been refereed by at least two other experts (unpaid and anonymized) in the field of study in order to determine the article’s scientific validity.

You may also come across the following types of scientific papers in the course of your research.

•       Scientific review papers are also published in peer reviewed journals, but seek to synthesize and summarize the work of a particular sub-field, rather than report on new results.

•       Conference proceedings, which may be published in a journal, are referred to as the “Proceedings of Conference X”. They will sometimes go through peer review, but not always.

•       Editorials, commentaries and letters to the editor offer a review or critique of original articles. They are not peer-reviewed.

Most scientific journals follow the IMRD format, meaning its publications will usually consist of an Abstract followed by:

•       Introduction

•       Methods

•       Results

•       Discussion

 

Let’s look at each of these sections in turn.

(a) Introduction  

The Introduction should provide you with enough information to understand the article. It should establish the scientific significance of the study and demonstrate a relevant context for the current study.  The scope and objectives of the study should be clearly stated.

When reading the Introduction, ask yourself the following questions:

·       What specific problem does this research address?

·       Why is this study important?

(b) Methods

The Methods section outlines how the work was done to answer the study’s hypothesis. It should explain new methodology in detail and types of data recorded.

As you read this section, look for answers to the following questions:

  • What procedures were followed?
  • Are the treatments clearly described?
  • How many people did the research study include? In general, the larger a study the more you can trust its results. Small studies may miss important differences because they lack statistical power. Case studies (i.e. those based on single patients or single observations) are no longer regarded as scientific rigorous.
  • Did the study include a control group? A control group allows researchers to compare outcomes in those who receive a treatment with those who don’t.

 (c) Results

The Results section presents the study’s findings.  It should follow a logical sequence to answer the study hypothesis.  Pay careful attention to any data sets shown in graphs, tables, and diagrams. Try to interpret the data first before reading the captions and details.  If you are unfamiliar with statistics, you will find a helpful glossary of terms hereClick here for an online guide to help you understand key concepts of statistics and how these concepts relate to the scientific method and research.

Consider the following questions:

  • Are the findings supported by persuasive evidence?
  • Is there an alternative way to interpret these findings?

(d) Discussion 

The Discussion places the study in the context of the broader field of research. It should explain how the research has moved the body of scientific knowledge forward and outline the next steps for further study.

Questions to ask:

•       Does the study have any limitations? Limitations are the conditions or influences that cannot be controlled by the researcher.  Any limitations that might influence the results should be mentioned in the study’s findings.

  • How are the findings new or supportive of other work in the field?
  • What are some of the specific applications of the study’s findings?

The IMRD format provides you with a useful framework to read a scientific paper. You will need to read a paper several times to understand its findings. Consider your first reading of the study as a “big picture” reading.  Scan the Abstract for a summary of the study’s principal objectives, the methods it used and the principal conclusions. A well-written abstract should allow you to identify the basic content of an article to determine its relevance to you.  In describing how she determines the relevance of a study, research RN, Katy Hanlon, focuses on “key words and phrases first. Those that relate to the author/s base proposal as well as my own interests”.  Medical writer, Nora Cutcliffe, also scans upfront “to gauge power and relevance of clinical trial data”. She looks for “study enrollment (n), country and year”. It’s important to note the publication date to determine if this article contains the latest findings or if there is more up-to-date research available. Cutcliffe also advises you should “note author affiliations and study sponsors”.  Here you are looking out for any potential bias or vested interest in a particular outcome.  Check the Acknowledgments section to see if the author(s) declare any financial interests in the research which might bias their findings. Finally, check if the article is published in a credible journal.  You will find reputable biomedical journals indexed by Pubmed and Web of Science.

Next, circle or take note of any scientific terms or keywords you don’t understand and look up their meaning before your second reading. Scan the References section – you may even want to read an article listed here first to help you better understand the current study.

With the second reading you are going to deepen your comprehension of the study. You’ll want to highlight key points, consult the references, and take notes as you read.  According to the scientific publisher, Elsevier, “reading a scientific paper should not be done in a linear way (from beginning to end); instead, it should be done strategically and with a critical mindset, questioning your understanding and the findings.”  Scientist, Dr Jennifer Raff, agrees. “When I’m choosing papers to read, I decide what’s relevant to my interests based on a combination of the title and abstract”, she writes in How to read and understand a scientific paper: a guide for non-scientists. “But when I’ve got a collection of papers assembled for deep reading, I always read the abstract last”. Raff explains she does this “because abstracts contain a succinct summary of the entire paper, and I’m concerned about inadvertently becoming biased by the authors’ interpretation of the results”.

When you have read the article through several times, try to distill it down to its scientific essence, using your own words. Write down the key points you have gleaned from your reading such as the purpose of the study, main findings and conclusions. You might find it helpful to develop a template for recording notes, or adapt the template below for use. You will then have a useful resource to find the correct reference and to cross reference when you want to consult an article in the future.

In the example below I have taken an article published in 2015, as an example. You can read the paper Twitter Social Media is an Effective Tool for Breast Cancer Patient Education and Support: Patient-Reported Outcomes by Survey on PubMed.

Template for Taking Notes on Research Articles

 

 

Further reading

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

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. According to the National Institute of Mental Health, 74% of people suffer from speech anxiety. Surveys show that the fear of public speaking ranks as one of the most common phobias among humans. There’s even a name for it – glossophobia – the fear of public speaking. Whether you are daunted or excited by the prospect of speaking in public it pays to have a plan in place to communicate effectively.  For a presentation to impact an audience and be memorable, you must structure the content, design the slides, and use public speaking techniques effectively. Next time you are asked to deliver a presentation, follow this step-by-step guide designed to help you become a more confident, prepared, and persuasive speaker.

STEP ONE: PREPARE YOUR TALK

Good presentation skills begin with thorough preparation. Here are seven tips to help you prepare for your next talk.

1. Decide what you want to say. What is the purpose of this talk? What do you want your audience to know, feel, or do after they have heard you speak? Your presentation should have a purpose, something that the audience walks away eager to do. Write down your core message in one or two clear sentences. Include a call-to-action (CTA) detailing exactly what should happen next. If you find that you have several messages you would like to deliver, challenge yourself to focus and simplify your message. Once you have a clear focus for your talk, you can then group your other ideas around it.

2. Know your audience. Who will be coming to your talk? Why are they coming to listen to you? What do they already know about the topic you will be speaking on? Find out as much as you can about your audience so you can better speak to their interests and in the language they are most familiar with.

3. Do your research. Do you want to present facts and figures in your talk? Are there any research studies you could incorporate to make your core message stronger? Use online tools like Symplur, the Journal of Internet Research (JMIR), and Google Scholar to help you with your research.

4. Structure your presentation. Now it’s time to put your key messages and research points together in a structured way. Having a structure is a helpful roadmap to keep you on track and to allow the audience to follow along with your points. Start with astrong opening, for instance, share some compelling statistics, outline a current problem, or share a memorable anecdote. If you feel comfortable sharing a personal story, this is one of the most effective ways to get your audience to pay attention. Stories leave a lasting impression on listeners. Patient advocate Martine Walmsley points to the importance of sharing your patient story because the story “behind the diagnosis is a side researchers and clinicians don’t usually see. Don’t assume they already know those details.” (Read Why Your Patient Story Matters for more tips on how to tell your patient story). Healthcare consumer representative and patient experience consultant Liat Watson advises patients to speak from the heart. “People want to connect with you and your story”, she says, “Share like you are sitting around the kitchen table”.

Next, organize your main points into an order that will make sense to your listeners. Reflect on your key points and how you might emphasise them.  Finally, determine the take-home lesson (CTA) you want to close with and how you will convey this to your audience. Your CTA should transmit a sense of urgency. Why is it important they hear your message and act now?  What will happen if they don’t act?

5. Add visual interest. If you decide to use slides in your presentation aim to create highly-visual slides with minimal text. Never cram information onto your slides. Instead, present one idea per slide so the audience can process each point fully before being presented with another idea. By presenting only one point at a time the information is easier to understand, and the audience is less likely to experience information overload.  Avoid excessive use of bullet points, not only do they contribute to the phenomenon known as Death by PowerPoint, but they are also proven to be an ineffective method of communication for presentations. Take care when choosing fonts for your presentation– how you present your text is an important factor in making your slides clear and compelling.  Type Genius is a useful tool to help you find the perfect font type and which fonts complement each other.

For a change from the usual PowerPoint presentation, consider using an alternative such as Keynote (for Mac) Prezi or Haiku Deck. Whichever tool you decide on, your slides should be visually engaging.  Make good use of diagrams and charts and find some compelling images to hold your audience’s attention. When choosing an image make sure it is high resolution so that it will still look pleasing to the eye when it is blown up to full-screen proportions. Don’t be tempted to use an image you have sourced from a Google search unless the image is licensed “Creative Commons”. Instead look for images on sites such as Foter, Pixabay, and Unsplash, all of which gives you access to a bank of high resolution free-to-use photos. As a general rule of thumb, stick to one image per slide – anything more than that simply looks too cluttered.  If you want to add text to a background image, choose a background with plenty of “whitespace” which will allow the text to be read clearly. If your image is lacking whitespace, try applying a blur effect or a gradient fill when you want to add text to your background.

6. Stand and deliver.  Rehearse out loud using whatever slides, notes, or props you plan to use during your talk. Don’t simply practise by sitting at your desk clicking through your slide-deck; stand and deliver your talk as if you are doing it in front of an audience. Work on your voice intonation and emphasis, flow and transitions, and practise controlling filler words, like “ems” and “ahs” (Toastmasters Internationalpoints out too many fillers can distract your audience). Crohn’s disease patient, Nigel Horwood, who has spoken to a large audience of nurses at Kings College Hospital, London, UK, recommends reading your talk out loud when you are practising. “I find that simply reading through what I have written doesn’t pick up the likes of over used words or even ones that are missing. Much better to hear it being read,” he has written in his blog Wrestling the Octopus.

Modulate your speaking voice to a lower pitch (if you can do so without sounding unnatural); the deeper the pitch of your voice, the more persuasive
and confident you sound. In “The 5 P’s of Powerful Speaking for a Memorable Speech”, professional speaker Pam Warren points out that “in public speaking clarity and tone are far more important than volume in that they imply authority, a certain gravitas and above all, confidence.” When speaking on certain points you may want to stress their importance, so practise the power of the pause – a slight pause before you’re about to say something important.  Take a printed copy of your text and make marks, such as a forward slash (/) or use color coding in your paragraphs to remind you to pause at key points in your talk.

The most important thing you should practise is the opening of your talk. Focus on conveying a strong, confident start which will set the stage for everything that follows.  Time your presentation using a stopwatch, or one of the many free countdown timers available online. After practicing a few times on your own, ask a friend to listen to you. If you don’t want to do this, video or audio record your presentation so you can play it back and see how you might improve on delivery.

7. Final preparations. Make sure you have a good night’s sleep the night before your talk and have your clothes freshly pressed and ready on hangars. Back up your presentation to a flash drive (or the cloud), pack a plentiful supply of business cards and handouts (if you are using them). Health consumer advocate Melissa Cadzow recommends making it easy for people to follow up with you after your talk, by having a dedicated business card for your patient advocacy work. She also recommends including information on your LinkedIn and Twitter profiles and providing an email address in your presentation slides.

 

STEP TWO: DELIVER YOUR TALK

It’s the day of your big presentation. Plan to arrive early so you can familiarise yourself with the room, meet the technical team, check your slides are working correctly, and practice using the microphone.

When you take to the stage, resist the urge to begin speaking straight away. Take a few moments to ground yourself – set your feet slightly apart, toes pointing towards the centre back of the room (this gives you balance and is the most secure and comfortable way to stand when talking).  Pull your shoulders back and down – this allows your chest to expand, so you have more breath when you begin to speak.  Make eye contact and smile at your audience which will help to relax you if you are feeling nervous.
When you begin to speak, do so slowly and clearly to give your audience time to absorb your words. Remember to take full breaths between sentences.

Dealing with presentation nerves: Feeling anxious or being nervous before a big presentation is normal. If you feel nervous, focus on the fact that your audience wants you to succeed. They are on your side. You were chosen to speak and you are the expert they have come to hear. There’s no need to tell them that you are feeling nervous – people probably won’t even notice if you don’t mention it.  Whenever you feel those first signs of nerves such as a racing heart, sweaty palms and shallow breathing, bring awareness to the physical sensations, take some deep breaths and anchor yourself by touching something physical, such as a table or the slide advancer, or push your weight into your toes and feet.  It’s perfectly natural to feel nervous, but try to focus your attention away from your nervousness and concentrate instead on what you want to say to your audience. Recognize that nerves are a signal that this is something that matters to you. Turn your nerves into enthusiasm and passion for your topic.

 

STEP THREE: AFTER YOUR TALK

Spend time after the presentation to reflect on how things went. Ask yourself (or others) what you thought went well and what could have been better? Take some notes on which techniques worked to help calm your nerves, which stories resonated with the audience, and how you answered any questions in the Q&A.  The purpose of this exercise is to become a better presenter the next time you are asked to give a talk, by putting the lessons you learn each time into practice. Take every opportunity you can to practise speaking in public. Not only is it an important way to get your message out into the world, but mastering the art of public speaking is a wonderful way to boost your personal and professional confidence.


Editor’s Note: For another creative presentation design tool, please check out Canva.

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.”

Finding Meaning After the Caring Is Over.…

Real patient experiences shared privately at www.TreatmentDiaries.com. Read more, share if you like or join in the conversation. Making sure you feel less alone navigating a diagnosis is important. Connecting you to those who can relate and provide support is what we do.

TD logo

It’s almost six months since mom died. I still am in a vulnerable place. Still trying to work, but not seeking it aggressively. Still trying to find my path forward. I had a bad fall about a month ago, and I’m still recovering. My knees, legs and feet are not right. Through no fault of my own, I lost my health insurance. As of today, I get to choose my plan on the exchange, and hope to get back what I lost, keep my doctor, and get back on track.
treatmentdiaries-dec
In this weird time, I have learned something about myself. Through caregiving, I learned to be still. During the worst times before mom came to live
with us, I had to literally sit still in her apartment, and just be there when she was full of fear, hallucinating, paranoid. During the worst times of her dementia, when I was searching for information, help, connection, I found power in stillness. Overpowering my own fear. Being strong for her. It took years, moving her here with my husband and myself, fighting for everything she needed. She gained so much here. The return of her sweetness and fine sense of humor, the conquering of her fears, the benefit of community.

Fast forward to the last days of caregiving. More than six years later, mom had become so frail. At the end we brought in a hospital bed, supposedly to keep her safely in bed. What the universe didn’t know was that this tiny woman had the power to launch herself over the bars, or through the openings between the rail and the foot of the bed, and end up in her old bed, sitting in her wheelchair, or even curled up on the floor. I never had sleep. I never knew what or where she’d be when I went into her room. I needed to be on guard to hear her soft raspy voice call me at any moment.

But the thing that frightened me most and what I HAD to face and get over, was the fear of infantizing my mom, by changing her depends in the hospital bed. This fear was causing us to get up at any hour, and take her into the bathroom, where I had to hold her up with one arm and tend to her with the other. It was hard on her, she was too weak to support herself. It was hard on me, my shoulder was already compromised from the years of supporting her or steering her walker, among so many other things.

This fear grew out of caring for my dad years before, who had Parkinson’s, and was so angry at his loss of dignity. My brother and I have terrible memories of tending to him, and falling over with laughter when things went wrong. My dad was so angry. I loved my dad more than anything, and incurring his anger left me scarred.

So when faced with having to change my mom in her hospital bed, I avoided it as long as I possibly could. But finally, I asked the visiting hospice nurse (more about this later) to show me how. I learned a few tricks from her. But I still had to get over my fear of insulting her dignity. Mom was not like this. She didn’t seem to be angry that her daughter was changing her, holding her up. She was fighting her own weakness. She might not have known who I was at these moments. And mom had her sense of humor intact. Till the very end. This was her gift.

The night I finally changed her in the bed, I decided to reward us both at every turn with cheering! Praising her to the skies when she could turn over on her side, praising myself with my ability to do every task! Praising us both with loud cheering! Good for you! Good for me! Hooray for us! Hooray!

Now you may think this is a little nuts. And maybe it is. But by gaining courage through humor, I think I have found meaning and conquered my greatest enduring fear.

The Importance of Caregivers

In honor of November being National Family Caregivers Month, we wanted to highlight the importance of family caregivers. A family caregiver is a person who provides any type of physical and/or emotional care for an ill or disabled loved one at home. Loved ones in need of care include those suffering from a physical or mental illness, disability, substance misuse or other condition. In most cases, the primary caregiver is a spouse, partner, parent or adult child. Caregivers often take on the responsibilities of the patient while still providing for themselves and other family members. Some important tasks and roles of a caregiver are:

Advocate. Sometimes patients are not completely forthcoming with their physical or emotional needs and tend to downplay their pain when speaking with doctors. Caretakers play an important role in honest communication between doctors and patients by upholding patient preferences for treatment options when the patient cannot or will not speak for him or herself.

Personal Care. Caregivers may help with daily activities such as dressing, bathing, toileting, or arranging child care.

Household Tasks. Caregivers are often in charge of preparing meals, doing chores or laundry, shopping for groceries or paying bills.

Emotional Support. When faced with a serious diagnosis, patients are often overwhelmed by the emotional and physical turmoil. Caregivers are tasked with the important duty of providing support and encouragement for the patients as well as themselves. Communication is key in the relationship between a caregiver and a patient. It is important to both openly share feelings and remain empathetic to the situation.

Medical Care. Caregivers must be present, take notes, ask questions and assist loved ones in making decisions with the care team. They may also be responsible for administering, ordering, and picking up medication, providing transportation to appointments, and dealing with scheduling, billing, or insurance issues. Caregivers may also assist with other medical processes such as physical therapy, injections, feeding tubes, etc.

There are close to 65 million caregivers in this country alone. The estimated monetary value of family caregivers’ unpaid contributions was estimated $450 billion in 2009, though the true value of caregivers far exceeds any monetary worth. In honor of National Family Caregivers Month, we would like to thank all of those who aid in the care of those in need.

Resources for Caregivers: National Alliance for Caregiving


References:

http://www.netofcare.org/content/getting_started/

http://www.cancer.org/treatment/caregivers/copingasacaregiver/if-youre-about-to-become-a-cancer-caregiver

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.