Activating a Community of People Living With Lung Cancer

Screen Shot 2015-10-22 at 5.16.16 AMNovember is Lung Cancer Awareness Month, and although lung cancer is the leading cause of cancer death in the world, the disease has long been stigmatized, leading to a sense of isolation for people already struggling with the considerable upheaval of a lung cancer diagnosis. Many living with this disease have said that connecting with others who also have a lung cancer diagnosis can inspire them to learn to “live with lung cancer.”

 

LVNG With Program

Through a new program called LVNG With (pronounced “Living With”), AstraZeneca, with the partnership of three leading lung cancer advocacy organizations (Bonnie J. Addario Lung Cancer FoundationFree to Breathe, and Lung Cancer Alliance), are activating a community of people living with lung cancer and their loved ones, to share their experiences and inspire one another. More than 100 people with lung cancer and their loved ones contributed to the development of LVNG With by sharing personal stories about their emotional journeys with lung cancer and their everyday lives.

Richard, who was diagnosed with lung cancer in 2004, conveys a sentiment that we’ve heard from countless people who are living with lung cancer and who contributed insight to this program: “I never imagined myself being an advocate for lung cancer. But I really do feel I need to be a voice. There need to be people who can speak out for lung cancer and give other people hope.”

Initial elements of the LVNG With program include a web site (www.LVNG.com), printed quarterly newspapers and live events, all intended to activate and connect those within this underserved community. We intend to add social media elements, such as Facebook and Instagram,  to continue to activate a community of people living with lung cancer and their loved ones. These channels will serve as another forum to share personal stories, posts, and images, and to invite people to post their own.

Following are excerpts from the personal stories you can find on at www.LVNG.com.

Dann’s Story

Dann, who was diagnosed with lung cancer in 2006, shared the following on Emotions:

“It’s important to do things that you feel give you some control. It feels totally out of control to be given this diagnosis, but there are things that are within your control.

“Exercise is one of those. It’s a mood elevator. It also is helpful to do all of the things that you can do to influence your treatment. Choosing which treatment provider that you have, choosing who you are going to involve in treatment.

“I’ve found that on the one or two occasions when I went to appointments by myself, it was much more stressful. So having other people share the experience with you is important.

“I feel a lot more deeply and I have a lot more awareness of my feelings. My gratitude for everything around me has grown exponentially. Stopping to smell the flowers is not just one of those clichés. I stop and smell the flowers, I stop to appreciate a couple of words that my secretary said when I walked by or that the sun is out today.

“There is so much more that I appreciate.”

Deena’s Story

Deena

Deena

Deena, who was diagnosed with lung cancer in 2012, shares the following perspective on Friends and Family:

“My relationships have changed, especially with my children. They saw a crack in Mom that was unexpected. I’m more fragile now than I was before. I was always the tough one, the disciplinarian. I had no health issues at all. The diagnosis came out of the blue for all of us.

“Our grandkids live a bit further away and we used to not see them as often, but now we won’t miss out on anything. There was a birthday party for our granddaughter and because her brother came down with a fever everyone else decided to stay out of the ‘sick house.’ We showed up anyway. I wanted to be there for every birthday party she wants me to attend.”

 

If you know someone who is facing a lung cancer diagnosis or may wish to participate in a live event in 2016, please share LVNG.org as a resource. We plan to add new stories to the LVNG With web site on a regular basis. If you wish to contribute a story, sign up to keep in touch.

 

John McCarthy

John McCarthy

John McCarthy is VP, Global Commercial Excellence, AstraZeneca

The Stigma of Lung Cancer

Tori Tomalia

Tori Tomalia

Tori Tomalia is a stage IV lung cancer patient, avid patient advocate and a writer and blogger. You can find her at Lil Lytnin’ Strikes Lung Cancer 

In the spring of 2013, my biggest concern was juggling my time between grad school, work, and caring for my 4 year old son and 2 year old twin daughters. The nagging cough and increasing exhaustion were pushed to the back of my mind as mere side effects of trying to take on too much. As my breathing troubles increased, my doctor began treating me for asthma, but none of the half-dozen inhalers and pills seemed to make any difference. It wasn’t until a CT scan revealed an enormous mass in my left lung that the words “lung cancer” entered my vocabulary. By then, the cancer had spread throughout my bones and liver. At age 37, I was diagnosed with stage IV lung cancer. Inoperable, incurable. Terminal.

Screen Shot 2015-10-22 at 5.16.16 AM

How could that be possible? I was never a smoker. Like all of us, I had heard over and over that smoking causes lung cancer, but sadly I have learned first-hand that the truth is much more nuanced. Smoking is bad for you, that is obvious and I doubt you could find a single American who hasn’t heard that yet. But so is living a sedentary lifestyle, so is eating junk food, so is having too much stress. It wasn’t until I received my horrible diagnosis that I learned there is one cancer where patients are blamed for their disease, and made to feel that they do not deserve a chance at a cure.

 

If you think I’m exaggerating, take a look at the numbers:

  • Lung cancer takes more lives than breast, prostate and colon cancers combined – it accounts for 27% of all cancer deaths.
  • Lung cancer is the second leading cause of all deaths in the US.
  • The federal government spends about $26,000 in research dollars for every breast cancer death. They spend less than $1,500 per lung cancer death.
  • 160,000 Americans will die of lung cancer this year. 80% will be never smokers or nonsmokers (people who once smoked but have quit).
  • Lung cancer in never smokers is the 6th leading cause of US cancer deaths.
  • Lung cancer kills almost two times as many women as breast cancer, and three times as many men as prostate cancer.

Lung cancer is the second leading cause of death in the USA! You would think funders would be tripping over each other trying to find better treatments and cures, but the bias against this disease is incredibly powerful, and it is costing people their lives.

Another sobering development is that the incidence of lung cancer in young, nonsmoking women is on the rise. Theories abound, but there is no consensus on what is driving this troubling trend. For me, the “why” is less important. What matters to me is more time with my family, and the only way that is going to happen is through research and more treatments for lung cancer.

November is Lung Cancer Awareness Month, and what I ask of you is to simply become aware. Become aware of this disease that is a threat to every person with lungs. Become aware of the precious nature of each breath you have the joy of taking. Become aware of the challenges facing people with this disease. Become aware that no one deserves this.

And if you still feel that the people of all stripes with lung cancer are not worthy of your compassion, well there’s this old story I heard about throwing stones….

How to Prepare for a Second Opinion Doctor Appointment

Expert physicians and cancer patients agree that getting a second opinion is crucial, even if you are very pleased with your primary medical team. It is your health and your life; take care of yourself!

A second opinion will help you learn more about your illness and treatment options. What you learn also will help you communicate intelligently with your medical team to get the best, most personalized care.

But doctor appointments can be scary, overwhelming and intimidating. There is the possibility of bad news and the apprehension of receiving confusing an difficult-to-understand information. Here are some tips to help you make the most of your second opinion appointment.

Prepare in advance

Plan to take a trusted friend or family member with you

This is critical. Memory retention is only 10% and less when you are stressed. You will not remember everything that is said during the appointment. You need to have someone there with you to be ‘another set of eyes and ears’. Then you can discuss key points with this other person to make sure you both heard the same information, go over options, and, if appropriate, ask for their input and opinion,

Record the conversation

Ask the doctor if you can record the conversation. Pull out your smartphone and record it! Then you can play it back at your leisure and discuss it with your family and the person who accompanied you to the appointment. You can then go over key issues, play back critical discussions and not miss anything!

By the way, many expert physicians have endorsed the idea of recording the discussion at a doctor appointment so don’t be afraid to ask!

Think of questions to ask and write them down ahead of time

No one thinks and speaks at the same time and does it effectively. And stress adds to the mix. So plan ahead and write your questions down to prepare yourself for the appointment. For example:

  • Confirmation of diagnosis
  • What are the next steps?
  • Am I eligible for a clinical trial?
  • What are my treatment options and does the second opinion doctor agree with the original treatment options?
  • What are the side effects of the treatment options?

If a clinical trial is advisable, you can ask these questions:

  • What is the purpose of the study?
  • Who is sponsoring the study, and who has reviewed and approved it?
  • What kinds of tests, medicines, surgery, or devices are involved? Are any procedures painful?
  • What are the possible risks, side effects, and benefits of taking part in the study?
  • How might this trial affect my daily life? Will I have to be in the hospital?
  • How long will the trial last?
  • Who will pay for the tests and treatments I receive?
  • Will I be reimbursed for other expenses (for example, travel and child care)?
  • Who will be in charge of my care?
  • What will happen after the trial?

Bottom line: You do not need to become a medical expert in your disease. By following the guidelines above, you can become more knowledgeable to make informed decisions about your path to improved health and quality of life.

 

 

Does Patient Empowerment Lead to Better Cancer Treatment Outcomes?

According to a study presented at the World Congress of Psycho-Oncology (WCPO) in late July, 72.3% of patients diagnosed with cancer defer their treatment decisions to their doctor. While this number is not surprising, it is cause for concern.

With a diagnosis of cancer comes a barrage of possible options for treatment. Often, choosing between these options can be overwhelming and intimidating, especially as there is typically not a clear answer and many uncertainties in terms of potential outcome.

How can we help patients navigate these tough decisions, such as whether or not to get a second opinion or participate in a clinical trial? How can we help patients gain the confidence they need and help them feel empowered and in control as they discuss treatment options with their healthcare team?

 Helping patients self-advocate

A survey done last year by Patient Power of 1295 chronic cancer patients showed that 73% of those
surveyed said the health information they found online helped them feel more confident and more in control of their health (see infographic at the end of this post). Learning about your illness from experts and from other patients can be a rewarding and empowering experience.

Organizations such as the Cancer Support Community (CSC) and others, including us at the Patient Empowerment Network (PEN), offer programs to help patients stand up and advocate for themselves and become informed so that they, in partnership with their heath care team, can make the right decisions for them.

Programs and resources designed to empower patients

The study presented at WCPO found that educational workshops, such as the CSC’s Frankly Speaking About Cancer program, that aim to educate and empower those affected by cancer can have dramatic outcomes in terms of patient confidence in making treatment decisions. In fact, the study found that as a result of attending a Frankly Speaking About Cancer workshop, 85.5% of respondents reported having increased confidence in discussing treatment options and making treatment- related decisions with their health care team. (Harvey, et al 2015)

 

Live audience at a recent town meeting for patients

Live audience at a recent town meeting for patients

PEN’s Town Halls and Patient Café programs give patients and carers tools and resources to discuss treatment options, including clinical trial participation, with their doctor and their family and make informed and empowered decisions throughout their illness.

Participant surveys from these meetings are overwhelmingly positive. Over 80% typically rate the event as good to excellent, and many write in emails like the following:

 

 

“Thank-you for all you do and have done to help those of us with CLL better understand this journey we are traveling.   The information you give is such a great help when I talk with my doctors and just for peace of mind in better understanding what I am facing.  Mary”

Answering your questions about clinical trials

In addition to helping facilitate conversations about treatment decisions, PEN offers a comfortable and convenient place to find user-friendly information about clinical trials. One of our goals is to help you understand the process by introducing you to people just like you who have participated in, or are considering participating in, clinical trials. We also offer opportunities to hear from doctors, nurses, caregivers, caseworkers and others about their perspective on what it means to participate in a clinical trial.

Patients helping patients

"Powerful Patients" at a recent town meeting

“Powerful Patients” at a recent town meeting

There are many resources available to help patients navigate their journey and we encourage you to take full advantage of them. If you can’t find what you need, don’t hesitate to reach out to let us know how we can better help you. And, most importantly, please remember, you are not alone. We stand beside you as a community of patients helping patients.

 

 

 

 

Patient Power Infographic

Sources:

http://www.cancersupportcommunity.org/General-Documents-Category/Research-and-Training-Institute/Posters-and-Presentations/Factors-Influencing-Treatment-Decisions-Among-Cancer-Patients.pdf

http://www.patientpower.info/about/survey-results-2014

 

 

Stage III Lung Cancer Survivor

His Choice – His Terms

Meet Randall Broad –

Randy is a Patient Empowerment Network board member and 7-year lung cancer survivor. Randy attended the 2015 American Society of Clinical Oncologist (ASCO) annual conference held in Chicago, Illinois the weekend of May 29 – June 2, 2015. This was Randy’s first year at ASCO. This year, ASCO focused on the voice of the patient. Randy says this shifting perspective is finally “putting the patient first or making the patient a huge part of the treatment equation.”

Screen shot 2015-06-07 at 3.56.46 PMRandy was diagnosed with stage III non-small lung carcinoma on March of 2008: “It was March 28th, 2008,” says Randy. Randall Broad – a professional small business owner and a father to two kids – says, “I had been healthy pretty much my entire life.” Following his diagnosis, Randy says, ” I fired my ‘first’ crew.” Randy identifies this as the turning point for his role in his care.

“It is so incredibly important that you find the right team- it is a team, it is not one person.” Randy’s local hospital, where he had been treated his whole life, recommended an internal oncologist. Broad says, “when I interviewed the surgeon he basically pushed me out of his room – I don’t think that was his intent, but that is what he did.”

From March 28th, 2008 – January of 2009, Randy made an early distinction between acceptance and fighting against cancer. “I chose the cancer over letting it choose me, meaning that I am going to embrace this, accept it as part of my life because if I try to fight it, beat it, I figured it would probably win.“ Early in Randy’s journey with lung cancer, surgery became the next option but the visualization of his cancer revealed it was inoperable.

When one is newly diagnosed, one typically has no idea of where to look or seek a network of survivors for advice.  With Lung Cancer’s high mortality rate it makes it all the more challenging. Randy demonstrates a relentless conviction to choose his perspective and not give into his cancer. He says it was not until he had lived a couple of years with the disease that he learned about advocacy organizations and focused on being a proactive patient-advocate. “You don’t go to the yellow pages and look it up,” says Randy.

With a great amount of content available online, Randy says there is more information about the disease but not information about where to actually be treated. After moving past the first experience, Broad found his feet tepidly at the steps of the Seattle Cancer Care Alliance. He says meetings with Dr. Renato Martin at SCCA validated the credibility of this surgeon. Broad describes relationship building as a key element to solidify quality care.

From August to November of 2008, Randy received radiation, and chemotherapy combined with radiation. He could sometimes spend up to 13 hours a day at the University of Washington Medical Center and Seattle Cancer Care Alliance. To counteract the physical exhaustion from treatment and cancer, Broad attempted yoga, massages, facials, pedicures, acupuncture and prescribed medication – these remedies only provided a small sigh of relief.

Screenshot from http://itsanextraordinarylife.com/

Screenshot from http://itsanextraordinarylife.com/

At the time of Randy’s diagnosis in March of 2008, his two kids were 13 and 14-years old – a highly formative time in their lives. Prior to being diagnosed with cancer, Randy focused on his small business to provide a sustainable life for him and his children. “I didn’t spend as much time with my kids.” Cancer opened the doorway for Randy to rectify his relationships with his children. Randy says, “My kids are the most important aspect of my life.”

Patient Empowerment

Randy and his children committed themselves to affirmative thinking. When treatment concluded in January of 2009, Randy was deemed cancer free – yet he continued to have scans every couple of months. He says, “Every year that passes, the chances of it reoccurring is minimized.” Broad was diagnosed with cancer over six years ago and still remains cancer free today.

Randy now shares his journey nationally and is committed to empowering patients to be proactive. He presents at about ten speeches a year. One of Broad’s first speaking engagements was with 60 lung cancer patients. After his speech, 20 people approached him to say, “It never dawned on me to fire my crew – my oncology team.”

Randy says he left ASCO with an important message: value-based healthcare. Value-based healthcare places patients and physicians in a greater role to examine all treatments costs and outcomes. Randy has dedicated his life to the empowerment of individuals with all types of cancer. As Randy’s book says, It’s an Extraordinary Life.

Stay up-to-date with Randall Broad’s latest speaking engagements and written work: It’s an Extraordinary Life.

We also invite you to click this link to peer into a vivid and poignant moment printed words cannot convey.

Can(cer) Do! – Why We Should Talk About Cancer

Carol Preston

Carol Preston

I saw two productions about cancer in a 48-hour period this weekend…and went home smiling.

The first, produced at Washington, DC’s Theatre J, was called The Prostate Dialogues. It was written and acted by a very fine local raconteur, Jon Spellman. In 75 minutes – with no break – John unfurled his prostate cancer story from diagnosis to his treatment decision (surgical extraction at Johns Hopkins). Along the way, Jon peppered his experience with humor and a graphic depiction, through a normal and happy cell called “Glen,” of the development of those nasty mutated cancer cells. A five-minute description of a 20-year process. Brilliant!

Two days later, my husband and I saw a newly released movie in the U.S., “The Fault in Our Stars,” based on the best-selling, young adult book by John Green. The movie had received excellent reviews, so despite the subject matter, we went to see it. It’s about two teenagers, each with terminal cancer, who fall in love. Hazel and Augustus are doomed. We know it from the start of the movie. And yet, the film was done with grace and understatement and humor. There was no hyperbole. The acting was honest including the antics of Augustus’ now-blind-from-cancer buddy Isaac. Was it heart-breaking? Yes. Was it sometimes funny and often uplifting? Also yes.

As a nearly eight-year survivor, I expected to shed many tears at this movie. It was my non-cancer husband who welled up and forced himself not to cry in public.

Here’s the takeaway: In the U.S., we are talking about cancer! We are talking and laughing about it a lot and in the open, often with people who don’t have cancer. Cancer no longer is quietly discussed in the back room, in hush-hush tones with family and our doctors. Cancer has seeped, no, it is flowing into the mainstream consciousness. The more we learn, the less we fear. The less we fear, the more we live our lives through family, travel and work.

The mantra of my doc at MD Anderson in Houston is to “live large.” In other words, say ‘yes’ to as many opportunities and invitations as possible. If you live in the DC area, go see The Prostate Dialogues. In the U.S., cry and laugh with Hazel and Augustus at “The Fault in Our Stars.” And remember, cancer is not a dirty word. It’s a condition that we face, like Hazel and Augustus, with grace and humor, and now more than ever, in the open.

 

 

 

 

 

Patients Helping Patients – Improving Health Literacy and Cancer Care

ASCO recently published their paper on  State of Cancer Care in America 2014. In this paper, authors outline concerns and possible courses of action. The report addresses cancer costs, increasing treatment options, growing number of cancer survivors, disparities of care and the challenges of meeting these needs and concerns. (ASCO created a great infographic on Cancer Care in the US which you will find at the end of this post)

ASCO predicts that by 2030, new cancer cases in the US will rise by 45%. By 2022, there will be almost 18 million cancer survivors, about a 35% increase from today. But ASCO is also predicting a national shortage of oncology specialists by 2025. New treatment options will increase the number of cancer survivors, which is a good thing, but the shortage of specialists will result in a strain on the existing providers and a possible decrease in quality or continuum of care for some patients. Disparities of care for certain ethnic groups coupled with rising costs of medications and treatment could further result in problems with quality or access to care. Besides shortage of oncologists and disparities of care, uneven geographic distribution of physicians leave those in rural areas wanting. ASCO cites an analysis of demographics showing that nearly 90% of oncologists practice in urban areas and that more than 70% of US counties analyzed had no medical oncologist at all.

Patient studying information at City of Hope patient forum

Patient studying information at City of Hope patient forum

As a direct result of the above challenges, cancer patients (and their families and caregivers) will most likely have to become more responsible for their care. It is of course most important to have the best medical team possible, but it is also important for patients to take care of themselves in between visits. Patients will need to monitor themselves better, and lead healthier, better lives. Those taking the oral cancer medications will need to be extremely compliant and take measures to remember to take their medication at correct times and not forget doses. They will need to eat right and keep fit and do all they can to maintain a healthy lifestyle. They should also avail themselves of all information about their illness in order to keep up with the latest news and research.

Researching online, joining patient communities, conversing with other patients, using mHealth, social media or fitness trackers are all ways that patients can educate themselves and improve their knowledge during their journey.

Online research can greatly improve a patient’s knowledge about the course of their disease, possible treatment options, side effects from medication, clinical trials and much more. And many patients are fully aware of the wealth of information, embrace it and check online daily for updates and news. (For a good list of online resources, please look at our “Resources” page). However, for some patients, the diagnosis of cancer takes its toll and the patient is overwhelmed emotionally and needs help from family or caregivers. And for others, the internet is a mystery that they do not want to approach alone.

Older patients especially need help with gaining health literacy. They can be helped by a spouse or other family member if that is possible. If they live alone, there are some other options. Senior centers often offer courses in internet research and community colleges offer such courses as well. As soon as a patient is able to go online, email and do a simple search, the possibilities open up. Numerous online sites cater to the older population. Health in Aging, AARP, NIH Senior Health are some commonly known sites. But although these sites are great and do have a lot of information centered around seniors and health, I did not see any very easy visible step-by-step guide to internet searching. NIH Senior Health did have a “Trainer Toolkit” that explains how to help others research online, but there was no such toolkit for novices.

Patient discussion at City of Hope patient forum

Patient discussion at City of Hope patient forum

Patient communities are extremely helpful in supporting and educating cancer patients. Patients have said to me time and time again that there is nothing like talking to someone who has walked in your shoes. There are many online patient communities (again, check our resources page). There are also some live Patient Forum events that patients can attend to listen to expert physicians and talk directly face-to-face with other patients. These events are extremely well-received by patients, families and caregivers alike. For a testimonial about such an event by a patient attendee, please click here.

Another option is to contact Imerman Angels and get matched to a cancer patient that has issues and needs similar to your own. Jonny Imerman is a testicular cancer survivor who started Imerman Angels with the belief that no one should have to fight cancer alone. Imerman Angels partners anyone seeking cancer support with a cancer survivor “mentor”. These partners can meet face-to-face, on Skype or email – whatever method is most practical for them.

Online research is great and patient communities are great also, but there is a lot to be said about meeting and seeing someone face-to-face. As I mentioned above, the live, cancer-specific patient forums are extremely well-received; some patients had never met a “fellow” patient before and almost can’t stop talking to them once they do.

In the near future, we are going to initiate some “virtual” cancer-specific patient meetings on a video communications channel such as Skype or Zoom. We will invite patients to join us and talk virtually to other patients. I think this could work for older patients as well who are not so versed in searching online. If they have someone to help them set up a computer and webcam, then all they would have to do is join in the conversation…or just listen. And perhaps this could open up future meetings for them with other patients. Technology is improving and becoming so user-friendly. All Zoom requires in order to join a Zoom meeting is that you answer the email and click on “join meeting”.

One great advantage of virtual meetings is that patients can join in regardless of where they live or what their mobility status is. Patients in remote rural areas can join in the conversation as well as patients who do not have easy access to transportation or those that are house-bound.

With the number of cancer survivors growing and the number of physician specialists shrinking, patients need to do all they can to help themselves and to help one another. Patients helping patients will increase health literacy,  patient empowerment and improve cancer care.


Resources:

http://www.aging.com/health-and-wellbeing/

http://jama.jamanetwork.com/article.aspx?articleid=1866090

http://www.asco.org/practice-research/cancer-care-america

How Chronic Cancer Patients Use Social Media to Stay Informed

New research and treatment has made many cancers that were previously terminal now chronic. Patients live with the condition and daily go about their lives. But often, they do have to manage their cancer and often they worry about reoccurrence, side effects from medication and progression of the disease.

The chronic patient is often “forgotten”.  They are under treatment, doing (fairly) well, and doctors and the media are focusing on the more urgent issue of treating the acute or advanced cancer patient.

Chronic cancer patients want to know and understand their disease.  They would like a cure and they seek out the newest and latest information online looking for answers on treatment options, and how to best live with their disease.

Where can chronic cancer patients go for help online?

There are numerous sites for help with living with chronic cancer.  Many are disease-specific, offering news about new treatments or research.  There are several good video channels that offer interviews with cancer specialists about treatments, clinical trials or other information on specific cancers.  There are patient support networks and numerous Facebook pages that offer patients the opportunity to connect with other patients and post discussions about all aspects of their disease.

There is an overwhelming amount of information online and often, it is difficult to sift through all of it.

I have listed a few of these sites below.  In no way is this a comprehensive list, but I have asked several cancer patients and opinion leaders for their input and have added their thoughts to the list.

Resources for Chronic Cancer Patients

Cancer.gov

CLL Global

Patient Power

CanCare

Oncology Tube

National CML Society

Leukemia Lymphoma Society

Patients Against Lymphoma

CLL Topics

Institute for Myeloma and Bone Cancer Research

The Myeloma Crowd

International Myeloma Foundation

 

Facebook groups

Essential Thrombocythemia

Myeloproliferative Neoplasms

Polycythemia Vera & Budd-chiari Syndrome Awareness

 MPN Forum

Myeloproliferative Neoplasms 

 

Patient Opinion Leaders and Advocates

Another great way to obtain information on chronic cancers is to follow patient opinion leaders (POLs) on social media channels.  These patients have been living with their specific cancer (or cancers) for some time and have spoken about their experience (often publically), written books and articles about it, formed groups or even organizations or companies around chronic cancer.  They have Facebook pages, tweetchats, blogs, video programs and websites.  They organize patient meetings, interviews with physician specialists and events around their illness.  They have the experience and know-how to conduct excellent informational programs for other patients; they are a wonderful source of information.

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Andrew Schorr, @Andrew Schorr, founder of PatientPower and author of the Web Savvy Patient has been in remission from Chronic Lymphocytic Leukemia since 2001.  In 2012, he was diagnosed with a second cancer, myelofibrosis.  Andrew now leads a normal life, thanks to a new targeted oral therapy.  He has been a leader in patient education since 1984 and is considered to be one of the most respected and reputable Patient Opinion Leaders.

When I asked Andrew why he did what he did, he responded,

“I feel a responsibility to try to help other patients do better because of something I’ve learned through my experience. While others might wish to protect their privacy I “go public” with the hope to ease the journey of other cancer patients like myself. It helps me feel I am doing something significant and helps all of us know we are not alone, but rather a real community.”

Patient Advocates also help other patients by coaching them through living well and coping with their disease.  They use social media to spread the word about their illness and educate patients around the world.

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I also spoke with Cindy Chmielewski, @MyelomaTeacher, a former elementary school teacher and a multiple myeloma patient that is now a patient advocate for the disease.  Cindy is on the Board of Directors of the Philadelphia Multiple Myeloma Support where she is in charge of the Patient Education Library and Patient Advocacy. – She speaks at support groups, tweets about myeloma, and participates in several online support communities.

When asked why she did what she did, Cindy answered,

“Everyone needs a purpose in life.  Being a teacher for 28 years before my medical retirement I knew my purpose in life was to be a facilitator of information. When I regained my strength after my Stem Cell Transplant opportunities began to fall into my lap. I had some very good mentors when I was newly diagnosed. I am very grateful that I able to pay it forward. Sharing what I learn gives my cancer experience a purpose. Using social media allows me to reach a larger audience.  I am still a teacher, but now I teach a new subject with different students. We are all in this together and we can gain strength from one another. My life once again has meaning”. 

The Power of Social Media

Social media has drastically changed the idea of patient empowerment. Patients all over the world can connect, educate themselves and their family members, network, and instruct and educate others. And they are doing just that. The day of the passive patient is over: Welcome, empowered patient!

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Patient Power!

This post was originally published on HealthWorks Collective