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.

Least Invasive First

Dr. Winn Sams

Dr. Winn Sams

Editor’s Note: This blog was written by Winn Sams, D.C. Dr. Sams practices in Columbus, NC a small town snuggled in the foothills of the western part of the state.  A native of Charlotte, NC with a B.A. in Economics from the University of North Carolina- Chapel Hill, Dr. Sams graduated from Sherman College of Chiropractic in 2002 summa cum laude and valedictorian of her class. From her own experience where personal health directives and choices were not heard nor respected, she decided to create a site where uniqueness and diversity could be anchored in healthcare. Being a healthcare provider, she knew how important it is for the “whole” person to be not only known, but included in a plan of care. Thus, Least Invasive First was born.


Recently, my youngest daughter broke her right arm and dislocated her elbow. The ER referred her out to an orthopedist nearby. We showed up at the appointment with a lot of questions and wanting to know what our options were. The doctor entered the room, did not make eye contact with me nor my daughter’s friend, who was sitting next to me. His handshake was a mere extension of his hand to us (friend and myself), kind of like a king might do to his subjects to kiss his ring. He said he would like to order a CT scan of my daughter’s elbow and do surgery. I asked were there any other options and he said “No” and that he would be back in a few minutes. He never came back, but his nurse showed up to schedule the surgery. I was furious and let her know my dissatisfaction, clearly acknowledging that it wasn’t her fault, but we would not be coming back.

Now, you have to understand I am a Doctor of Chiropractic. I see patients every day and I would never treat anyone the way we were treated. There was no informed consent , no shared decision making in developing a treatment and no respect for who my daughter was (or us for that matter) as a unique person seeking care. EVERYONE deserves all of the above! So, we left that office and made an appointment with another Orthopedist, who was absolutely fabulous. Our experience was night and day from the first one. We felt like we were a part of creating our plan of care, throughout the whole appointment and were at peace with the planned surgery, leaving there feeling like we were in good hands.

My concern is this. When we are in pain or an emergency situation, we usually are not thinking straight. We just want someone to help us get out of pain and/or tell us what is wrong. We may accept the first Doctor that we encounter, as he/she knows more than us. As far as what a Doctor is taught in school, the knowledge of how the body works and their expertise/experience, that is true. HOWEVER,  the patient still has to be included in the whole process, otherwise, you are giving your power over to someone to do as they deem fit TO you. That is a recipe for disaster.

Data and evidence based science measure outcomes that can be repeated. That is a big help when trying to choose a plan of action, but healing and how our bodies RESPOND to said procedures or medications is not an exact science. This is where our uniqueness comes in. Some people are allergic to medications or do not need to start out with the highest dose, as their bodies may actually react unfavorably to what may be the standard practice. Some people would like to try other options first, if possible. In the best interest of all, seeing how that choice works and then moving on to more invasive choices if necessary. It is imperative that your Doctor know as much about ALL of you to make the best plan of care. But, you don’t have to back down or be ashamed of your choices if they don’t match up with your provider’s. Remember, a Doctor is only a person ( yes, just a person like you and I) who has certain training and experience in particular fields. You cannot assume that your Doctor has your best care in mind, when they don’t have a clear picture of who you are on all fronts.

So, with all of this in mind, I developed a site called Least Invasive First, www.leastinvasivefirst.org, where you can keep all of your advance health directives and info in one place, with everything digitally accessible at any time. You can upload forms and/or pictures into your profile that provide information, that in especially stressful times, you have available at the click of a button. Medications can be listed with dosage, so you can edit them as they change. You can also give your username and password information to a family member, so they have access to your information if you are unresponsive or not able to make decisions for yourself. There are a lot of creative ways that this service can be used.

Fortunately, this concept works well for the Doctor and/or hospital side too. I have interviewed many of both and all have voiced a resounding affirmation that information the patient provides would be a tremendous help. I am glad to offer a way to potentially change healthcare and it starts with you!

 

 

 

How Do You Find Out About Clinical Trials?

Interview with Larry Anderson, Jr., MD, PhD, Assistant Professor, Department of Internal Medicine, Division of Hematology/Oncology University of Texas Southwestern Medical Center, Patient Advocate, Lynette, and Robert Orlowski, MD, PhD, Director of Myeloma and Professor in the Departments of Lymphoma/Myeloma and Experimental Therapeutics The University of Texas MD Anderson Cancer Center

From  the Virtual Town Meeting: Understanding the New World of Myeloma Treatment, Andrew Schorr first ask Dr. Anderson about how patients can find out about clinical trials, whether that be a governmental website, advocacy groups, or each institution’s individual website. Later he gets Lynette and Dr. Orlowski’s opinion on the matter. Check out the full video below to hear from three myeloma experts.

How Do You Find Out About Clinical Trials? from Patient Empowerment Network on Vimeo.

Myeloma Expert Roundtable

From the annual American Society of Hematology (#ASH16) Conference, Dr. Robert Orlowski leads a panel discussion with four  Myeloma experts about what’s new and exciting in the field of Myeloma. This panel included:

  • David E. Avignan, MD, Associate Professor, Medicine, Harvard Medical School, Active Staff, Hematology-Oncology, Beth Israel Deaconess Medical Center
  • Jennifer Ahlstrom, Patient Advocate and Founder of Myeloma Crowd
  • Noopur Raje, MD, Director, Center for Multiple Myeloma Massachusetts General Hospital
  • Gareth Morgan, MD, PhD, FRCP, FRCPath, Director of the Myeloma Institute for Research and Therapy, The UAMS Myeloma Institute

Check out the full video below to hear from four Myeloma experts:

Myeloma Expert Roundtable from Patient Empowerment Network on Vimeo.

Nothing About Us Without Us: Patient Involvement in Research

Until recently, patient participation in research was limited to their involvement as subjects enrolled in research studies, but there is a shift occurring as funding bodies increasingly look for evidence of patient and public involvement (PPI) in research proposals. The rationale for this is increasing evidence that PPI in the provision of healthcare leads to improved outcomes and better quality of care.

Assumptions are made every day about patients; assumptions which may lead to a failure to deliver optimum care. When these assumptions extend to research, quite often there is a mismatch between the questions that patients want answers to and the ones that researchers are investigating. As an example, the research priorities of patients with osteoarthritis of the knee, and the clinicians looking after them, were shown in a study to favor more rigorous evaluation of physiotherapy and surgery, and assessment of educational and coping strategies. Only 9% of patients wanted more research on drugs, yet over 80% of randomized controlled trials in patients with osteoarthritis of the knee were drug evaluations. PPI recognizes that patients bring a unique perspective and experience to the decision-making process in research. It is paternalistic and patronizing to rely on speculation about patient experience. By considering the actual experience of patients, researchers can make more informed research decisions. Involving patients is an important step in ensuring that the real life experiences of patients are considered when it comes to setting research priorities. This in turn will increase the relevance of research to patients and improve research quality and outcomes.

As an advocate you may be asked to become involved in a research project, so it is important to have a clear understanding of what PPI is – and what it isn’t. PPI is not about being recruited as a participant in a clinical trial or other research project, donating sample material for research, answering questionnaires or providing opinions. PPI describes a variety of ways that researchers engage with people for whom their research holds relevance. It spans a spectrum of involvement which may include any of the following:

  • Being involved in defining the research question
  • Being a co-applicant in a research proposal
  • Working with funders to review patient-focused section of applications
  • Being an active member of a steering group for a research study
  • Providing your input into a study’s conception and design
  • Contributing to/proofing of documentation
  • Assisting in the implementation and dissemination of research outcomes
  • Improving access to patients via peer networks and accessing difficult-to-reach patients and groups

Effective PPI transforms the traditional research hierarchy in which studies are done to, on, or for participants into a partnership model in which research is carried out with or by patients.  PPI should always involve meaningful patient participation and avoid tokenism. The Canadian Institutes of Health Research Strategy for Patient-Oriented Research (SPOR) describes PPI as fostering a climate in which researchers, health care providers, decision-makers and policy-makers understand the value of patient involvement and patients see the value of these interactions. Underpinning this framework are the following guiding principles for integrating patient engagement into research:

  • Inclusiveness:Patient engagement in research integrates a diversity of patient perspectives and research is reflective of their contribution.
  • Support:Adequate support and flexibility are provided to patient participants to ensure that they can contribute fully to discussions and decisions. This implies creating safe environments that promote honest interactions, cultural competence, training, and education. Support also implies financial compensation for their involvement.
  • Mutual Respect:Researchers, practitioners and patients acknowledge and value each other’s expertise and experiential knowledge.
  • Co-Build:Patients, researchers and practitioners work together from the beginning to identify problems and gaps, set priorities for research and work together to produce and implement solutions.

Derek Stewart, a patient advocate and Associate Director for Patient and Public Involvement at NIHR Clinical Research Network, sees a growing momentum of actively involving patients and public in research gathering pace worldwide. “It is really pleasing to hear researchers saying how valuable it has been to involve patients and the public in their work”, he says. “It has equally improved the quality of the research and enriched their own thinking and understanding.”

Earlier this year, PCORnet, the National Patient-Centered Clinical Research Network, announced its first demonstration study which reflects PCORnet’s aims of patient engagement and open science. ADAPTABLE (Aspirin Dosing: A Patient-centric Trial Assessing Benefits and Long-Term Effectiveness) will compare the effect of two different aspirin doses given to prevent heart attacks and strokes in high-risk patients with a history of heart disease. Seeking input at every critical step, from consent design and protocol development, through dissemination of final study results, the project represents a new research paradigm. Unprecedented in the design of clinical trials, the final consent form and protocol were shaped with input from patients, local institutional review boards, physicians, and study coordinators.

Another noteworthy example of PPI can be found in the Metastatic Breast Cancer Project a direct-to-patients initiative launched at the Broad Institute of MIT and Harvard last October. Corrie Painter, an angiosarcoma patient and Associate Director of Operations and Scientific Outreach at Broad Institute, explains that “the project seeks to greatly accelerate the pace of biomedical research by empowering patients to directly contribute to research and was built in lock step from design to consent language with dozens of patients.”

To what extent you may wish to be involved in PPI will depend on several factors. Do you have professional experience (e.g. project management, clinical experience, etc.) which would be useful? Are you happy to work as part of a team? Or would you prefer to work on your own? You should also take into consideration your other work or family commitments. For instance will you need to take time off work to attend meetings? Consider also at what point you are in your own health journey. Will participation in research place an added burden on your treatment or recovery? In making the decision to become involved in research, you should always balance your own health needs with the desire to be supportive of research and the research process.


Useful links

PCORI www.pcori.org

PCORnet www.pcornet.org

Metastatic Breast Cancer Project www.mbcproject.org

#WhyWeDoResearch www.whywedoresearch.weebly.com

Who Is Eligible and How Can I Learn More About Clinical Trials?

From the Lung Cancer Town Meeting in September 2016, Janet Freeman-Daily interviews a panel of lung cancer experts about who is eligible for clinical trials and how you can learn more about them. The panel includes the following experts:

  • Nisha Monhindra, MD Assistant Professor of Medicine, Hematology/Oncology Division, Feinberg School of Medicine Robert H. Lurie Comprehensive Cancer Center of Northwestern University
  • D. Ross Camidge, MD, PhD, Director Thoracic Oncology Clinical and Clinical Research Programs University of Colorado Denver
  • David D. Odell, MD, MMSc, Assistant Professor, Thoracic Surgery Robert H. Lurie Comprehensive Cancer Center of Northwestern University
  • Timothy J. Kruser, MD, Assistant Professor, Radiation Oncology Robert H. Lurie Comprehensive Cancer Center of Northwestern University

Check out the full video below to hear all of the lung cancer experts advice.

Who is Eligible and How Can I Learn More About Clinical Trials? from Patient Empowerment Network on Vimeo.

What Records Should You Bring For A Second Opinion Appointment?

From the Lung Cancer Town Meeting in September 2016, Janet Freeman-Daily interviews a panel of lung cancer experts about what are the essential records patients should bring to their appointment when getting a second opinion. The panel includes the following experts:

  • Nisha Monhindra, MD Assistant Professor of Medicine, Hematology/Oncology Division, Feinberg School of Medicine Robert H. Lurie Comprehensive Cancer Center of Northwestern University
  • D. Ross Camidge, MD, PhD, Director Thoracic Oncology Clinical and Clinical Research Programs University of Colorado Denver
  • David D. Odell, MD, MMSc, Assistant Professor, Thoracic Surgery Robert H. Lurie Comprehensive Cancer Center of Northwestern University
  • Timothy J. Kruser, MD, Assistant Professor, Radiation Oncology Robert H. Lurie Comprehensive Cancer Center of Northwestern University

Check out the full video below to hear all of the experts advice.

What Records Should Your Bring For A Second Opinion Appointment? from Patient Empowerment Network on Vimeo.

Getting A Second Opinion From A Rural Location?

From a CLL Town Meeting in September 2016, Janet Freeman-Daily interviews a panel of cancer experts about how patients in rural or remote locations can get second or multidisciplinary opinions from larger facilities or academic institutes. The panel includes the following experts:

  • Nisha Monhindra, MD Assistant Professor of Medicine, Hematology/Oncology Division, Feinberg School of Medicine Robert H. Lurie Comprehensive Cancer Center of Northwestern University
  • D. Ross Camidge, MD, PhD, Director Thoracic Oncology Clinical and Clinical Research Programs University of Colorado Denver
  • David D. Odell, MD, MMSc, Assistant Professor, Thoracic Surgery Robert H. Lurie Comprehensive Cancer Center of Northwestern University
  • Timothy J. Kruser, MD, Assistant Professor, Radiation Oncology Robert H. Lurie Comprehensive Cancer Center of Northwestern University

Check out the full video below to hear all the experts advice.

 

Getting A Second Opinion From A Rural Location? from Patient Empowerment Network on Vimeo.

The Benefits and Pitfalls of Blogging About Your Illness

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

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

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

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

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

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

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

 

 

Finding The Right Oncologist For You

finding-the-right-oncologist-for-youWhen you put your life in someone else’s hands, you need to feel completely comfortable and confident with that person – especially when that person is your oncologist. How do you go about finding the right one for you?

One of the best ways to find an oncologist is through referrals from people you trust, such as your primary care physician, family, friends, local hospitals or your insurance company. Many insurance plans allow their members to search doctors by name or specialty. The American Society of Clinical Oncology (ASCO) provides a free, searchable database of ASCO member oncologists. These doctors opt to make their information available to the public.

Other medical associations offering searchable databases:

Once you have collected and written down a few possible oncologists’ names, remember to ask yourself these three questions:

What are their credentials?

Board certification is one of the most important factors you should consider when choosing an oncologist. It assures you that the doctor has the necessary training, skills, and experience to provide healthcare in oncology. Additionally, choose a doctor that treats your specific type of cancer and has related experience with that disease. The more experience the doctor has with a certain cancer, the better your outcome will likely be. Your doctor’s hospital is your hospital, so don’t forget to research the quality of care offered at that location as well.

What blend of traits are important to you?

Languages spoken, gender, and education may be important to you. You may also have strong feelings about personality and bedside manner. Some people want their doctors to have a business-like manner, while others value a doctor who can help with their emotional health as well as their medical needs. Whatever your preferences, the most important thing is finding an oncologist with whom you are comfortable.

What is their communication style?

Choose a doctor that values and respects your questions and answers you in a way that you can understand. Clarity and candor are highly important characteristics for a doctor. Make sure that your doctor values both shared decision-making and the best available clinical evidence, as well as your personal values and preferences throughout your treatment.

Once you have found a doctor that meets all the above criteria, ask him or her for an introductory phone call before scheduling an appointment. You should interview your potential oncologist the same way you would interview a lawyer or an accountant. Don’t be afraid to set-up introductory calls or appointments with a few oncologists for comparison. You may also want to consider the size of your doctor’s staff and accessibility to clinical trials.

Alongside considering size of practice, clinical trials or proximity to home, make certain that your new oncologist is someone you can work closely with and trust. Your new doctor will become the most valuable member of your cancer team, so it is imperative that you choose a doctor with whom you are comfortable.


Resources:

http://www.cancer.net

https://www.healthgrades.com/explore/8-tips-for-choosing-an-oncologist

http://www.cancer.org/treatment/findingandpayingfortreatment/choosingyourtreatmentteam/choosing-a-doctor-and-a-hospital

Chronic Illness: Oh, the Stress of It All!

(Melissa is a patient, advocate, and runs her own website www.curegp.com)

Everyone must deal with stress from time to time, and that is not necessarily a bad thing. Stress can actually be beneficial when it is short-term and low-level. It can boost your energy and memory, act as a motivator, and even enhance your physical strength. But those of us with chronic illness often battle prolonged stress, with few or no breaks, and this can be quite detrimental to our health. There is a growing body of evidence that indicates this type of stress can lead to serious health issues such as heart disease, migraines, stomach problems, high blood pressure, and depression. In order to avoid, or at least minimize these possible risks and effects, it is important to know how to recognize and manage potentially harmful stress.

Coping with stress can be particularly difficult for those of us living with chronic illness because of its long-term and serious nature. It comes with additional stressors that most other people do not face, and there is rarely a respite from these. Diagnosis is often accompanied by fear, confusion, and disbelief. Some of us experience apprehension because we feel we have not been given a proper initial explanation of our condition or enough information to manage it effectively. Conversely, there is commonly an overload of information to process regarding our numerous medications and the complex medical routines we must follow. We are often shocked by the overwhelmingly difficult lifestyle changes required of us. Upon initial diagnosis, many of us are confused and upset about the nature of our illness, its causes, its symptoms, our prospects for treatments or a cure, and the measures that will be required of us to accommodate the effects of our illness. We fear what the future holds.

There are other complications that concern us as well. It can be difficult to find a doctor who can (or will) treat us, and we must sometimes interact with several different physicians who manage our care. On occasion, we receive conflicting advice and recommendations from the medical professionals providing for our treatment. In times of medical crisis, we face decisions about whether it is appropriate to treat our illness at home, see our doctor, or perhaps visit the emergency room. Many of us struggle to find medications and treatments that work for us and must determine this through trial and error. Once we find helpful medications and treatments, we may face difficulty in gaining access to them and at times must battle with insurance companies who deny us coverage or physicians who hesitate to prescribe them. It can all be pretty overwhelming.

In addition to the hardship of dealing with the day-to-day management of the actual symptoms themselves, there are long-term concerns. Severe symptoms can eventually interfere with one’s social life and even jeopardize one’s career. Friends and family members may have unrealistic expectations about what a chronically ill person is capable of, and often, we ourselves have these same unrealistic expectations. We are regularly too sick to participate in social activities, and we feel much guilt over our withdrawal from social functions and gatherings we once found enjoyable. We may begin to feel increasingly cut off and isolated from the friends and family members we once knew. If serious enough, symptoms can result in missed days of work and eventual unemployment, which can lead to monetary woes. The loneliness, seclusion, and financial strain associated with these factors act as additional stressors and make it all the more difficult for those of us who are chronically ill to cope.

Indeed, life with chronic illness can be burdensome and stressful. Nonetheless, there are methods of averting or minimizing many of the factors that contribute to our stress. For starters, we can make an effort to prevent stress from occurring in the first place by educating ourselves. Searching the Internet, reading articles, asking questions of our doctors, and seeking out others with the same condition helps provide us with insight into our illness. It minimizes the fear of the unknown that accompanies our diagnosis and gives us an idea of what to expect in terms of symptoms, treatments, possible complications, and prognosis. It helps us recognize what is “normal” for our condition and what is cause for concern and aids us in preparing for what might be coming down the road.

We can also do our best to maintain a healthy lifestyle. (I am not suggesting we can attain perfect health; I am simply recommending doing whatever we can to be as healthy as possible given the limitations of our illnesses.) This might mean taking vitamins and supplements, exercising, making the most nutritious food/drink choices possible, getting adequate rest, and taking our medications as recommended.

In addition, we can work toward strong mental health. Rather than expecting “perfect” lives, we can focus on the good we have and be grateful for the small, joyful moments. Likewise, we can learn to manage the circumstances in our lives that can be governed and adapt to the ones beyond our command. (We may not be able to attend courses on a college campus, for example, but perhaps we can take online classes. Maybe we cannot make it to the movie theater, but we can view videos in the comfort of our own homes.) We can also forgive ourselves for our perceived shortcomings and pardon others for not acknowledging our limitations. We cannot control missing an event due to illness, but we can refuse to feel guilty and accept that we cannot “will” ourselves to be well. Our illnesses are real, and they come with genuine physical limitations.

Finally, we can learn to recognize the signs of harmful stress (i.e., mental confusion, anxiety, worry, depression, fatigue, altered sleep patterns) and seek help when we feel discouraged and defeated by joining support groups; talking to trusted friends, family members, and neighbors; or pursuing professional counseling. We can engage in pleasurable activities – such as reading, writing, listening to music, playing board games, etc. – that momentarily distract us from our debilitating symptoms. We can read encouraging books or practice relaxation techniques like yoga and meditation. We can ask loved ones for assistance or consider employing home helpers/aides to lend a hand with household chores or other tasks we have difficulty completing. Perhaps we can identify government and charitable programs (for prescription aid, low-income housing, reduced-cost medical care, and the like) that might ease our financial burdens.

We may not be able to entirely avoid the stress that results from our complicated and sometimes overwhelming circumstances, but we can learn to manage it. As chronic illness warriors, we face a constant, daunting battle against stress – but it is not one we must necessarily lose.

Mental Health & Cancer

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

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

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

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

Speak with your cancer team

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

Seek support

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

Get moving

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

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


Resources:

cancer.org

cancer.gov

Seven Steps to a Successful Digital Advocacy Strategy

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

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

Step One: Set Your Communication Goals

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

  • Specific
  • Measurable
  • Attainable
  • Realistic
  • Timebound

Specific – define your goals as clearly as possible.

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

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

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

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

Step Two: Define Your Target Audience

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

Step Three: Choose the Right Social Channels

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

Step Four: Create Compelling Content

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

Step Five: Implementation

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

Step Six: Monitor Social Media

It’s important to monitor social media on a regular basis to keep on top of what people are saying about you, your 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:

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

Final Thoughts

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

Engagement For Seniors

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

Clarify medical communication

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

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

Engage beyond the office

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

Don’t forget the caregiver

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

Utilize technology

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

Organize resources

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

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

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


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

References:

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

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

http://medcitynews.com

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

  • Gary Schweitzer’s Health News Review website provides many useful resources to help you determine the trustworthiness of medical news. To date, it has reviewed more than 1,000 news stories concerning claims made for treatments, tests, products and procedures.
  • 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.

Running From Cancer – And Towards Lower Risks

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

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

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

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


Sources:

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

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