Multiple Myeloma Archives

Plasma cells are cells in the immune system that make antibodies, which help the body fight infection and disease. Multiple myeloma cells are abnormal plasma cells (a type of white blood cell) that build up in the bone marrow and form tumors in many bones of the body.

More resources for Multiple Myeloma from Patient Empowerment Network.

Take the Plunge: How Swimming is Empowering Cancer Patients

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

Swimming is An Empowering Exercise

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

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

A Skill with A Lifetime Value

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

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

Grief, Loss, and the Cancer Experience

“In a society which is much more inclined to help you hide your pain rather than to grow through it, is necessary to make a very conscious effort to mourn.” -Henri Nouwen

Grief is a natural response to loss. While many people think of grief only as a reaction to bereavement, we can feel grief after any kind of loss. When we step back and look at the cancer experience we see that grief and loss are a fundamental part it.  Some of our losses are tangible, for example losing our hair, and some are more intangible, such as the loss of trust in our bodies.

Coping with the losses associated with cancer is challenging.  Grief brings many emotions with it. Patients as well as caregivers and family members may go through emotions of anger, denial, and sadness.  While there is no right or wrong way to grieve, there are healthy ways to cope with the pain and sadness that, in time, can help you come to terms with your loss, find new meaning, and move on with your life. 

10 Ways to Cope With Cancer Grief

1. Acknowledge Your Feelings

Attempts at avoiding or ignoring difficult feelings hinder the healing process. Nancy Stordahl, who writes about living with breast cancer on her blog, Nancy’s Point, says we need to “grieve for things we’ve lost to cancer. We aren’t the same people in some ways post diagnosis. We have lost parts of ourselves (figuratively and literally). We need to grieve for people, things and pieces of ourselves we have lost. Too many times we aren’t given the time or ‘permission’ to do so.” By facing our losses and feeling the pain we allow grief to take its natural course and can emerge the other side with greater self-awareness and acceptance.

2. Tune Into What You Are Feeling

It is helpful to get into the habit of checking in with your feelings.  Take a moment to stop and be still. Breathe deeply. Now ask yourself what you are truly feeling. Grief? Guilt? Sadness? Anger? Whatever arises, see if you can just be with the feeling and feel it fully without judging your thoughts or emotions. Is there a physical discomfort associated with this feeling? For example, when you’re anxious or afraid, you may notice a tightness in your chest. Can you soften and relax those areas of tension in your body?  You may find the intensity of your feeling lessens as you do this exercise. If the emotion deepens or adds to your distress, discontinue the exercise and try again later.

3. Write Down Your Feelings

If you feel stuck when sitting with your emotions, try journaling about the experience. For some people, it’s easier to write thoughts and feelings down on paper than to say them out loud.   Keeping a journal to write down your thoughts is a way to come to terms with your feelings of grief. Many cancer patients choose to write about their feelings in a blog. Blogging in a community of other patients who understand what you are going through can be very therapeutic (to learn more about starting a blog read this earlier post).

4. Take Care of Your Physical Health

Grief is as much a physical as an emotional process – (we often refer to grieving as ‘grief work’) – so it’s important that we get a good night’s sleep, take some exercise and eat healthy meals to regain our physical strength and heal fully.

5. Pay Attention to Grief Triggers

Anniversaries of your surgery, diagnosis and other cancer-related milestones can reawaken sad memories and feelings. Plan ahead for those times.

6. Go At Your Own Pace

There is no time-table for grief, yet so often we push ourselves to ‘get over’ our grief as quickly as possible. Adapting to and coping with cancer is a process, which neither you nor any well-meaning friends or family should rush you through.  Grieving is not something that occurs once and then you are ok.  Psychiatrist Elisabeth Kübler-Ross introduced what became known as the ‘five stages of grief’ as a way of looking at grieving process, but quite often these stages don’t follow a sequential order. In reality grief can be much more disordered. Some people start to feel better in weeks or months. For others, the grieving process is measured in years. Whatever your experience, it’s important to be patient with yourself and allow the process to unfold naturally.

7. Learn To Adjust To Your New Normal

Often we want to rush through our grief (or others want us to rush through it) so we can get back to ‘normal’ again.  The thinking behind this is when we ‘get back to normal’ we are healed. But we may find that it is no longer possible to go back to who we once were.

Your ‘new normal’ may include adapting to changes in energy and activity levels, adjusting to changed relationships at work and in your personal relationships, coming to terms with an altered body, and managing pain and treatment side effects. Be compassionate and gentle with yourself as you move through this process. Don’t judge yourself or try to hurry the experience along.

8. Take Stock

Many people see this as a time to create a new way of being in the world. Psychotherapist Karin Sieger sees in this time “opportunities of reflection, contemplation, looking at life and ourselves. And sometimes new realizations and decisions can come from that”. Ask yourself what is most important to you now? How do you want to live each day?  Hidden within grief is a healing potential that eventually can strengthen and enrich life. Rediscovering your dreams and identifying what you really want for your life can transform your loss into something new within yourself.

9. Don’t Go It Alone

Grief can feel very lonely, even when you have loved ones around. Turning to others who have experienced similar losses can help. Look to cancer support groups in your area or search online to connect with those who truly understand what you are going through.  Talking to a psycho-oncologist or counsellor can also help.

10. Recognize There Is No Right Way To Grieve

Grief is a highly individual experience. How you grieve depends on many factors, including your personality and coping style.  Commenting in her last book before her death in 2004, Kübler-Ross said about the five stages of grief: “They were never meant to help tuck messy emotions into neat packages. They are responses to loss that many people have, but there is not a typical response to loss, as there is no typical loss. Our grieving is as individual as our lives.” Don’t let anyone tell you how to feel.  Your grief is your own, and no one else can tell you when it’s time to ‘move on’ or ‘get over it’.

When Grief Doesn’t Go Away

We all cope with grief in our own way and most of us reach resolution and acceptance in time. It’s normal to feel sadness, depression and grief following a loss, but as time passes, these emotions should become less intense.  If you aren’t feeling better over time, or your grief is getting worse, it may be a sign that your grief has developed into a more serious problem, such as complicated grief or major depression.   If your grief is overwhelming or lasting for a prolonged time, seek out a mental health professional with experience in grief counselling. They can help you work through your feelings and overcome obstacles to your grieving.

Grief can be a roller coaster full of ups and downs, highs and lows.  It takes courage and time to work through your feelings of loss. Grief counsellor Taruni Tan has written that “everyone’s healing process is unique and while there may be universally recommended tools and techniques to try, we each have to discover our own individual formula.” The good news is that most of us who grieve recover with time.   We may be radically changed by the experience, but we find a way to continue to face the future.

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.

Living Well with Multiple Myeloma – Friendly Dieting

Friendly Dieting – Sifting Through Science vs. Hype

Living Well With Multiple Myeloma – Friendly Dieting from Patient Empowerment Network on Vimeo.

In this myeloma-friendly dieting webinar with Julie Langford of Cancer Dietitian (Cancer Services) and Danny Parker of MultipleMyelomaBlog.com , they lead a discussion focused on how to eat when you are living with myeloma. Both help us understand what “bad and good foods” are and what overall lifestyle changes may be helpful in allowing you to live a full life with myeloma.

Living Well with Multiple Myeloma – Staying in Tip Top Shape

Exercising With Multiple Myeloma – Staying in Tip Top Shape

Living Well With Multiple Myeloma from Patient Empowerment Network on Vimeo.

How do you exercise if you have myeloma? Should myeloma patients avoid exercise all together? Melanie House, a physical therapist at the University of Iowa Hospitals and Clinics specializing in prescribing exercise, shares how and when to exercise with myeloma.  Jim Bond, aka James Bond, a 25-year, stage III myeloma survivor and Matt Goldman, a 7-year myeloma survivor, shares how they stay active trough cycling and how they challenge themselves to stay in tip-top shape.

How To Cope With Cancer-Related Fatigue

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

What is cancer-related fatigue?

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

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

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

What medical help is available for cancer-related fatigue?

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

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

6 Everyday Strategies To Cope With CRF

 

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

1. Make deposits in your ‘energy bank’

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

2. Plan your day

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

3. Keep a fatigue diary

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

4. Do some regular light exercise

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

5. Eat healthily

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

6. Adjust your work schedule

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

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

How 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 here.  Click 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

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

Do clinicians have accurate expectations of the benefits and harms of treatments and screening tests?

new study in JAMA Internal Medicine concludes not. In a systematic review of 48 studies (13 011 clinicians), the researchers found that clinicians rarely had accurate expectations of benefits or harms, more often underestimating harms and overestimated benefits. Among the findings, obstetricians and neurologists underestimated the risk of birth defects from anti-epileptic drugs and GPs overestimated the benefit of prostate cancer screening. Transplant surgeons were biased towards an inaccurately low estimate of graft failure and all types of doctors were unaware of the risk of radiation exposure from imaging.

What do these findings mean for patients? Inaccurate clinician expectations of the benefits and harms of interventions can profoundly influence decision making and the standard of care patients receive. Patient activist, blogger, and author of the upcoming book “Heart Sisters: A Survivor’s Take on Women and Heart Disease” (Johns Hopkins University Press, November 2017), Carolyn Thomas, believes this to be “a consistently systemic issue for patients, too: most believe medical interventions will help more/harm less than they actually do”. It’s a wake-up call for patients who have a critical role to play in understanding and weighing up benefits and risks for ourselves, in order to get better treatment. And it’s a further reminder of the importance of shared decision making to reach a healthcare choice together, as opposed to clinicians making decisions on behalf of patients.

However, understanding the risks associated with a treatment is not necessarily straight-forward. The challenge for busy clinicians is that there isn’t always the time to read and digest the latest research to inform their practice. Medical commentator, physician, and cancer survivor, Elaine Schattner, believes that because medical knowledge changes so rapidly it’s hard for clinicians to keep pace. “This may be especially true in oncology,” she points out, “as patients become expert in their own conditions and needs, they may prefer to look up information on their own, and share their findings with their physicians.”

A lengthy article published this month in ProPublica, examines what it calls “an epidemic of unnecessary and unhelpful treatment” requested by patients and delivered by doctors, even after current research contradicts its practice. “It is distressingly ordinary for patients to get treatments that research has shown are ineffective or even dangerous”, writes David Epstein. “Some procedures are implemented based on studies that did not prove whether they really worked in the first place. Others were initially supported by evidence but then were contradicted by better evidence, and yet these procedures have remained the standards of care for years, or decades.” Epstein points to a 2013 study which examined all 363 articles published in The New England Journal of Medicine over a decade — 2001 through 2010 — that tested a current clinical practice. Their results, published in the Mayo Clinic Proceedings, found 146 studies that proved or strongly suggested that a current standard practice either had no benefit at all or was inferior to the practice it replaced. Of course, this is not to say that myriad treatments don’t indeed improve and save lives, but it’s important to ask questions and do your own research before making a decision on which treatment is the best for you.

Start by asking your doctor to explain all the treatment options open to you, including what would happen if you do nothing. Recognise that all treatments are inevitably associated with some risk of possible harm. Ask your doctor to quantify that risk beyond a purely descriptive term, such as “low risk” (what your doctor considers a small and acceptable risk may be unacceptable to you). Next, do your own research. In order to make an informed decision, you will need to gather reliable information on which to base your choice. Fully exploring the risks and benefits of treatment involves doing your own evidence-based research (using evidence from medical studies that have looked at what happens to many thousands of people with your condition). In a previous article, I shared with you some helpful guidelines for assessing medical information. Most media reports about the benefits of treatments present risk results as relative risk reductions rather than absolute risk reductions, so you will need to understand the difference. Absolute risk of a disease is your risk of developing the disease over a time period. We all have absolute risks of developing various diseases such as heart disease, cancer, stroke, etc. Relative risk is used to compare the risk in two different groups of people. For example, research has shown that smokers have a higher risk of developing heart disease compared to non-smokers. Ask your doctor to differentiate between absolute and relative risk. Check out the NNT website which provides non-biased summaries of evidence-based medicine. “NNT” stands for a statistical concept called the “Number-Needed-to-Treat” – as in “How many patients need to be treated with a drug or procedure for one patient to get the hoped-for benefit?” The core value of the NNT is its straightforward communication of the science that can help us understand the likelihood that a patient will be helped, harmed, or unaffected by a treatment. It provides a measurement of the impact of a medicine or therapy by estimating the number of patients that need to be treated in order to have an impact on one person. Because we know that not everyone is helped by a medicine or intervention — some benefit, some are harmed, and some are unaffected, the NNT tells us how many of each.

You may also want to hear about what other people with your condition have chosen to do and what their experience has been. But remember that just because something has/hasn’t worked for someone else, it doesn’t mean it will/won’t work for you. Orthopedic surgeon, Dr Nicholas DiNubile, recommends patients ask their doctors, “If this were you, or one of your immediate family members, what would you do and/or recommend?” While this may be useful, you must ultimately decide what benefits and risks are important to you. Can you tolerate the side-effects? Are you happy with the way the treatment is administered? Would you find it stressful to live with the risk of any serious side effects, even if the risk is small? What matters is whether you think that the benefits outweigh the risk of any side effects. Everyone is different. The treatment recommended for you may not be the best treatment for your particular lifestyle. Being an advocate for your own health care involves asking lots of questions, doing your own research, and making your preferences known to your doctor. By doing this, you will be better informed and in a stronger position to get the treatment that is right for you.


Related Reading
Clinicians’ Expectations of Treatments, Screening, and Test Benefit and Harm
The three questions that every patient should ask their doctor
Strategies to help patients understand risks

ePatient Virtual Courses

The ePatient virtual classrooms are designed to empower patients in all their healthcare matters.

ePatient 101

ePatient101: How to be an Empowered Patient, is an online course for anyone interested in becoming an empowered patient, empowered caregiver, or patient advocate. Through this online course taught by Alex Barfuss, you will learn:

  • The meaning of the term “ePatient”
  • Why being an ePatient is so important in today’s healthcare system
  • How you can save time and money and get better overall value from your health care providers
  • How to advocate for yourself
  • Tools, tips and best practices to help manage your or your loved one’s chronic disease

Caregiver 101

Caregiver 101 is full of useful tools for caregivers and taught by Caregiving.com founder, Denise Brown. By taking this course, you will learn:

  • How the carer/caree relationship can be a health relationship
  • How to find balance
  • How to find more time for your self
  • How to ask for support
  • Tips, tools, and tactics to be a better carer/caree
  • Curated links and resources
  • Videos
  • Knowledge quizzes
  • Support from a community of caregivers at cargiving.com

Chronic Lymphocytic Leukemia (CLL) 101

We are excited to be partnering up with Intake.me to bring you CLL 101. We wanted anyone struggling with a recent CLL diagnosis to become empowered through knowledge and support. By taking this course, you will receive:

  • An overview of CLL
  • Facts about CLL
  • Curated links and resources
  • Videos
  • Knowledge quizzes
  • Printable checklists with questions to ask your doctor
  • Why you should immediately get a second, expert opinion
  • Tips on building your healthcare team, and how your local doctor can work with a CLL expert to provide the best treatment
  • Where to find the latest CLL research, clinical trials, and other treatment options
  • Ability to ask questions from other CLL 101 students

These courses are part of the Intake.me experience and are free to everyone. You can sign up be clicking one of the buttons below. Enjoy!

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.

The digital sherpa® Program

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

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

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

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

2018 Outcomes

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

15 Tips To Get the Most From Your Doctor’s Visit

beautyHave you ever had the experience of leaving the doctor’s office wishing you had remembered to ask a certain question? Or have you left it until the very end to tell your doctor about the real reason for your visit? These so-called “doorknob” questions – bringing up an important concern just as you are leaving the office – can mean your doctor won’t have time to adequately address your concerns. When the average time it takes for a doctor’s visit is fifteen minutes, it’s easy to feel rushed and forget what you wanted to say, or to leave an appointment unsure of the information you have heard. But with a little advance preparation you can learn how to make the most of those fifteen minutes. Follow these fifteen tips to become a more empowered and engaged partner in your own health – and the health of those you care for.

1. When you call to make your appointment, explain clearly why you need to see the doctor. Let the receptionist know how much time you will need to schedule for the visit. If you have any special needs, such as wheelchair access or interpretive needs, let the office know in advance.

2. Be sure to that where you make your appointment accepts your insurance. You can call or go online to your insurance website to see a directory of in-network providers.

3. If this is your first visit to a new physician, gather together any past medical records and family medical history to take along with you.  If you’re seeing other doctors and have information they’ve provided, bring this along too.

4. Write down a list of your symptoms before the visit. It’s a good idea to keep a diary so you can chart your symptoms over time. Include details of the type of symptoms you are experiencing, when these symptoms began, and what makes them better or worse.

Use this common medical mnemonic to guide you.

(O)-P-Q-R-S-T

  • Pain (“Where does it hurt?”)
  • Quality (“What does it feel like?”)
  • Radiation (“Does it move anywhere?”)
  • Scale (“How bad is it? How much does it affect you?”)
  • Timing (“When did it start? How long does it last? Does it come and go? Is it gradual or sudden in onset? What makes it better or worse?”)
  • Other (“Any other symptoms?”)

5. Set the agenda at the start of your visit. Did you know that a patient has an average of 23 seconds to state their concerns before a physician interrupts? According to an article published in The Journal of the American Medical Association, only 28% of doctors know their patient’s full spectrum of concerns before they begin to focus on one particular concern, and once the conversation is focused, the likelihood of returning to other concerns is only 8%. Doctors have a limited amount of time for office visits. In order to use their time wisely they usually set the agenda and control the visit as much as possible. To avoid this happening to you, prepare in advance the top two or three concerns you want to raise with your doctor. Are you looking for a diagnosis? Do you need a new treatment plan or a modification of an existing plan? Are you looking for help with feelings of fatigue or depression? Don’t forget to describe your emotional state and any personal circumstances which may influence your physical health. Write down your main concerns so you are ready to verbalize them clearly at the beginning of  your visit.

6. If you use a self-tracking device, like a Fitbit, download your data and summarize the findings beforehand.

7. Bring a list of all medications you are currently taking, including over-the-counter medications, vitamins, herbs, or supplements. If you have a smart phone or tablet, it’s useful to take pictures of your medication and supplement labels to show the doctor.

8. During your visit, tell your doctor you would like to take notes. If you would prefer to record your notes via your smartphone, ask your doctor if it is ok to do so.

9. Medical care is a conversation. So to have influence in that conversation you have to speak up. If you don’t want the treatment your doctor recommends (or you’re not sure), it’s reasonable to ask if there are other treatment options available. Never be embarrassed to tell your doctor if you don’t understand something she has 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

10. If you find it difficult to speak up for yourself, or you are facing a potentially challenging diagnosis, bring a friend or family member along for support. This person can also take notes and help you remember what was discussed later.

11. Always be honest with your doctor. You may not like to admit how much you drink, or smoke, or if you have stopped taking your medication because of expense or side effects, but your doctor needs to know about these and other lifestyle matters to ensure you are receiving optimum care.

12. Ask you doctor to explain any test results to you, Request a copy of the results for your own files.

13. Before you leave, be sure you understand what needs to happen next. Do you need any further diagnostic tests? When will you get the results? If you have just received a diagnosis, what are your treatment options? If you have questions or concerns later how should you contact your doctor? You can also ask if your doctor recommends any specific reading materials or websites about your condition.

14. If you have been given a prescription for a new medication, do you understand how and when the medication should be taken? Are there any side-effects, for example drowsiness, you should watch for? How will you know if the medication is working? What happens if you miss a dose?

15. After your visit, review and file your notes along with any test results or other documentation and billing you received. Schedule any follow up tests or appointments right away.

Your relationship with your doctor is one of the most important you have. Advance preparation will help you use your own time and your doctor’s time more efficiently and effectively. When people take an active role in their care, research shows they are more satisfied and do better in how well treatments work. Preparing for your doctor’s visit is an important step toward becoming a partner in your own health care and a better advocate for your health and well-being.

The Benefits and Pitfalls of Blogging About Your Illness

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

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

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

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

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

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

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

Seven Steps to a Successful Digital Advocacy Strategy

Digital 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 organization, 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:

  • 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.

How to Read Beyond the Headline: 9 Essential Questions to Evaluate Medical News

Ben Goldacre writing in Bad Science classified science reporting as falling into three categories – wacky stories, scare stories and breakthrough stories; the last of which he views as ”a more subtly destructive category of science story”. Whether you get your news through digital or traditional means, you can’t fail to notice the regularity with which journalists report on the latest medical breakthroughs. Some of these reports are sensationalist (“coffee causes cancer”) and fairly easy to dismiss; but do you know how to separate fact from fiction when it comes to less sensationalist headlines?

The foundation of empowered patient-hood is built on reliable health information. This means not only knowing where to find medical information, but being able to evaluate it and knowing how it can be applied to your own, or your loved-ones’ particular circumstances. Headlines often mislead people into thinking a certain substance or activity will prevent or cure chronic 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 are designed to help sort the signal from the noise next time you read the latest news story heralding a medical breakthrough.

1. Does the article support its claims with scientific research?

Your first concern should be the research behind the news article. If an article contains no link to scientific research to support its claims, then be very wary about treating those claims as scientifically credible.

2. What is the original source of the article?

If the article cites scientific research you should still treat the findings with caution. Always consider the source. Find out where the study was done. Who paid for and conducted the study? Is there a potential conflict of interest?

3. Does the article contain expert commentary to back up claims?

Look for expert independent commentary from doctors or other healthcare providers to explain the findings (there should be an independent expert source quoted – someone not directly connected with the research).

4. Is this a conference presentation?

Journalists frequently report on research presented at large scientific meetings. It’s important to realize that this research may only be at a preliminary stage and may not fulfill its early promise.

5. What kind of clinical trial is being reported on?

If the news relates to results from a clinical trial, it’s important you understand how, or even if, the results apply to you. Quite often, news publications report on trials which have not yet been conducted on humans. Many drugs that show promising results in animals don’t work in humans. Cancer.Net and American Cancer Society have useful guides to understanding the format of cancer research studies.

6. What stage is the trial at?

Research studies must go through several phases before a treatment can be considered safe and effective; but many times journalists report on early phase trials as if these hold all the answers. The testing process in humans is divided into several phases:

  •  Phase I trials: Researchers test a new drug or treatment in a small group of people for the first time to evaluate its safety, determine a safe dosage range, and identify side effects.
  • Phase II trials: The drug or treatment is given to a larger group of people to see if it is effective and to further evaluate its safety.
  • Phase III trials: The drug or treatment is given to large groups of people to confirm its effectiveness, monitor side effects, compare it to commonly used treatments, and collect information that will allow the drug or treatment to be used safely.

Source: ClinicalTrials.gov

7. 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.

8. 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. The gold standard is a “randomised controlled trial”, a study in which participants are randomly allocated to receive (or not receive) a particular intervention (e.g. a treatment or a placebo).

9. What are the study’s limitations?

Many news stories fail to point out the limitations of the evidence. The limitations of a study are the shortcomings, 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, so always read the original study where possible.

Useful Resources

  • Sense about Science works with scientists and members of the public to equip people to make sense of science and evidence. It responds to hundreds of requests for independent advice and questions on scientific evidence each year.
  • Trust It or Trash is a tool to help you think critically about the quality of health information (including websites, handouts, booklets, etc.).
  • Understanding Health Research (UHR) is a free service created with the intention of helping people better understand health research in context. It gives clear and understandable explanations of important considerations like sampling, bias, uncertainty and replicability.