NHL Whole Patient Support Archives

NHL can unleash a whirlwind of unexpected emotions and experiences for patients and care partners. You are more than just a patient; more than just a treatment plan.

Whether your concerns are physical, emotional, nutritional, or spiritual, we can help.

More resources for Non-Hodgkin’s Lymphoma (NHL) Whole Patient Support  from Patient Empowerment Network.

Non-Medical Remedies For Managing Cancer Pain

Treating cancer often involves treating multiple symptoms, both physical and emotional. The symptom of pain, however, has been highlighted as one of the most critical due to the effect it can have on recovery and overall mental well-being. Pain is seen in approximately 25% of newly diagnosed patients, 33% of those having active treatment and up to 75% of those with advanced disease according to The American Pain Society. The World Health Organization have also identified cancer pain to be a global health concern, and also mention that a large percentage of patients are not adequately treated for pain.

While the normal regimes of medication treatments are usually prescribed by a variety of healthcare professionals, some elements of the pain or personal circumstances can be overlooked. In some cases the clinical approach doesn’t always work, leading many patients to look for alternative or holistic approaches to managing their pain.

Acupuncture, Reflexology and Art Therapy

Known as a physical therapy, medical acupuncture is an evidence-based medicine. It involves inserting sterile needles into certain points in the body which then stimulates the nerve to release natural chemicals which in turn give you a feeling of well being. Acupuncture, used alongside established drug therapy, has been shown to be most effective.

Reflexology is a type of massage that focuses on applying pressure to the hands and feet. There is no scientific evidence to support its use, but many people have reported positive outcomes in managing their pain. The belief is that having your feet and hands massaged in a specific way stimulates certain organs in the body which allows for the natural release of the body’s healing process and energy pathways – similar to the way acupuncture works.

Art therapy is a type of mental therapy that helps channel your focus away from the pain itself. “Art therapy does not replace the need for pain medication, but it can be used as an effective complement and reduce perceptions of pain experiences,” says Kelsey A. Skerpan, an art therapist with Harvard-affiliated Massachusetts General Hospital.

Furthermore, a study done in early 2018 and published inThe Arts in Psychotherapy looked at approximately 200 people who had been hospitalized for pain and found that just 50 minutes of art therapy significantly increased moods and lowered levels of pain.

The Benefits of Exercise

Depending on the stage of cancer you’re at and the treatment you’re having, exercise may be an option to help with chronic pain. Exercise regimes can be specifically tailored depending on your personal circumstances. Studies have shown that aerobic exercises like running, walking, cycling and swimming can have a positive influence on the way individuals react to their pain, resulting in effective pain management in the long-term.

The Importance of Sleep

Sleeping is the body’s natural way to rejuvenate and heal. If you’re living with chronic pain due to your cancer, a good night’s sleep may be difficult to achieve. Some medicines used in the treatment of cancer can also affect your sleep. To help get a better night’s sleep, try and be active during the day, avoid caffeine and carbonated drinks at night or sleep on a special mattress that curves to the shape of your body.

Pain can be difficult to manage if you have cancer. Speak openly and honestly about your symptoms with your doctor or nurse. If you’re planning on trying any therapies or alternative ways of managing your pain, always check with your healthcare team first.

MedHelp

MedHelp is an online health community that uses technology, data science, and expertise in consumer health behavior to deliver outcomes at mass scale. They help guide people through every step of their health journey and helps them achieve the results they seek.

With MedHelp, you are able to achieve the following:

  • Connect with others just like you to get advice and share your experiences
  • Track your health condition and easily share data with doctors and caregivers
  • Learn from people who have your condition by reading articles and blogs.
  • Ask questions from doctors via a Q&A forum

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.

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.

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.

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.

Why Your Patient Story Matters

“Tell me a fact and I’ll learn. Tell me a truth and I’ll believe. But tell me a story and it will live in my heart forever.” North American Indian proverb

As a patient or caregiver you may be asked to share your personal story with others. Your story serves as a powerful tool for raising awareness and offering valuable insight into the patient experience. Stories can be a bridge between the technical, rational world of scientific practice and the experiential world of patients. Stories also create a shared sense of meaning and community in our lives, lessening the isolation many of us feel when faced with a chronic illness.

The Power of Story

Stories have existed in our culture from the beginning of time. We use stories to derive meaning from experience and to pass along knowledge and wisdom. Recent breakthroughs in neuroscience reveal that your brain is in fact hardwired to respond to story. Your brain on story is different from your brain when it is receiving any other form of information, including straight facts and data. While facts and figures engage a small area of the brain, stories engage multiple brain regions that work together to build rich emotional responses.

In 2010, a group of neuroscientists at Princeton University used an fMRI machine to monitor what was going on inside the brains of both story-tellers and listeners simultaneously. They discovered that whilst the speaker was communicating to the listener, both their brains showed very similar activity across widespread areas. Their brains were effectively ‘in sync’ with one another suggesting a deep connection between storyteller and listener.” [1]

Tapping the Power of Patient Stories

Humans have an innate desire to feel connected with others who live life through similar lenses. When I first started telling my own story on my blog Journeying Beyond Breast Cancer, I did so in the hope that others on the same path might find some resonance and the knowledge that they are not alone. Chronic illness can be an isolating experience but the very act of sharing our stories with others counteracts the isolation we so often feel. It carries within it the seeds of community and connection which makes us feel less alone in our journey. Diabetes patient advocate and blogger Renza Scibilia captures this feeling when she writes: “There are billions of stories in the world and when we find people we connect with, we reach out and want to hold on. I know that’s how I feel about the Diabetes Online Community – I hear familiar stories and want to grab onto them and the people who wrote them because they help make sense of my diabetes life.”

Patient advocate and author, Jackie Barreau, believes the importance of sharing her personal story lies in “the ability to connect, empower and help others. It is also uplifting and inspiring to hear of people’s hardships whether through illness or unfortunate life events and the positivity & optimism they convey”.   Not only can sharing your story lessen feelings of isolation and open up new avenues of support, it can also offer vital diagnostic clues when others are searching for answers. Jackie explains, “through my volunteer work with for example, the Unicorn Foundation, as an admin for an online patient support group I see first-hand patients joining our group due to lack of knowledge and misinformation provided by their general practitioners and also physicians.”

The National Gaucher Foundation of Canada has coproduced an excellent storytelling toolkit with rare disease patient advocacy organization, Global Genes. It states that “medical terminology and data, though undeniably important, can obscure what it means to live with a disease and make it difficult for most people to relate. Personal stories, though, frame our individual experiences in a way that lets others connect and find diagnostic clues that may have been missing.” Isabel Jordan, the mother of a son with a rare disease, credits reading a patient’s blog to help her finally see the pattern in symptoms in her own son’s life, which set them on a new diagnostic path. “As a parent of a child with a rare disease I’m constantly looking for patterns, for clues, for ideas of what could be next in our diagnostic journey,” she writes, “I look for researchers, doctors, other connected parents to see what they are posting. It was through reading someone else’s blog that I could finally see the pattern in symptoms in my own son’s life. Connecting the dots by seeing them in someone else let me provide valuable clues to our own clinician researchers and now we’re heading down a new diagnostic path.”

How To Tell Your Story

Whether you tell your story through public speaking, print or online social media, take some time to plan ahead for what you will share and how you will share it. Speak from the heart; be accurate, honest and persuasive. The following questions will help you to develop your story in order for it to have maximum impact.

  • How much of my personal story am I willing to share? Be prepared that telling your story might make you feel emotional and vulnerable so enlist some support if you think you might need it.
  • What is too private to share? Let the audience know your boundaries.
  • How comfortable is my family with me talking about my story (or theirs)?
  • What supporting material will make my story stronger? Can you use pictures, research data, and statistics to support your story? Create an experience in images that evokes an emotional response.
  • What is the main take-home message you wish to leave your audience with? Focus on two or three main points for clarity.
  • What do I want my listener to do when I am done? Do you want your listeners to take action after hearing your story? Outline clearly the next steps they can take to do so.

Taking the decision to share your story is a personal one. Emma Rooney, a rare disease patient advocate has this to say:

“I’ve been telling stories since I was a child but my health story always seemed like something to keep private. Despite living with a rare disease my entire life, it wasn’t until becoming a young adult that I decide to share my journey with Gaucher disease. Openness to sharing has led me to other patients who have similar health experiences, and also connected me with stories that are very different from my own. This diversity helps me to better understand my condition and to connect the dots with new information. Storytelling has provided a type of healing that drugs alone can’t offer. My health is an evolving story, and continuing to be a storyteller is part of my wellness strategy and my way to contribute to the global community of patient advocates.”
Each of us has a compelling story to tell; a story with the power to build connection, increase understanding, and move others to take action. Developing our skills as storytellers is a powerful tool in our patient advocacy toolkit. Your story is a precious resource; use it wisely and well.

[1] PNAS.org: Speaker–listener neural coupling underlies successful communication by Greg J. Stephens, Lauren J. Silbert and Uri Hasson.

Virtual Patient Communities

Virtual Patient Communities Engendering A New Social Health Era

Howard Rheingold, who coined the phrase virtual communities, describes them as “cultural aggregations that emerge when enough people bump into each other often enough in cyberspace.” Rheingold’s words, though descriptive, may not fully capture the depth and breadth of experience many patients find when they go online.

Before the Internet connected people from every corner of the globe, many patients experienced their illness in isolation. Humans have an innate desire to feel connected with others who live life through similar lenses. The Internet, and social media in particular, has lessened this sense of isolation. It has shown us how much people are willing to reach out to others to provide advice and support – even to strangers online. Clay Shirky, author of Here Comes Everybody: How Change Happens when People Come Together, holds that “the desire to be part of a group that shares, cooperates, or acts in concert is a basic human instinct.”

There are as many reasons for joining a virtual community as there are communities online. Probably the most common reason people go online when they (or someone they care about) are diagnosed with an illness, is to find information. Figures from the Pew Research Center show that 1 in 5 Internet users have gone online to find others who might have health concerns similar to theirs. That percentage is even higher – 1 in 4 – among those living with chronic disease, or caring for someone with a disease. Not surprisingly, doctors remain the first choice for an accurate medical diagnosis. But the number of patients saying they turn to their friends, family and other patients for day-to-day advice, and emotional support is higher.

For some patients turning online for support is more convenient; not everyone can attend an in-person support meeting at the time they most need it. Online you can find 24/7 access to support, unbound by restrictions of time or location. Any person, anywhere, any time – whether they are a patient, caregiver, family member, or friend—can find someone else in similar circumstances who understands what they are going through.

For others, it is about finding hope. Corrie Painter, an angiosarcoma patient, passionately believes that networked patients save lives. In Rare Cancer Meets Social Media, Painter captures the joy of finding hope online.

“When faced with mortality, I think the first thing many of us do is try and find someone, ANYONE else who understands what we’re going through. I put feelers out into every corner of the Internet. And I found people! I sent them messages and received nothing in return. Turned out they were gone, all of them, by the time I tried to reach them. So I turned to Facebook in a last ditch attempt to find anyone who knew anything about this disease. And I found her. The one and only Lauren Ryan, alongside eight other members of an angiosarcoma facebook group that Lauren started in 2010. Every single one of them was alive. They were ALIVE. I instantly connected with each of them. Josephine was 3 years out from my same diagnosis and was ALIVE. Lauren was a year and a half out and had no evidence of disease. They took me under their wing and provided me with hope in spades. I clung to every word they wrote. It was the same story eight times over”.

Personal stories and first person accounts of illness are the life blood pulsing through the social media healthcare eco-system. By telling your story, you can help shed light on a condition’s symptoms, prognosis, and other details for those still searching for the correct diagnosis. Medical terminology and data, though undeniably important, can obscure what it means to live with a disease and make it difficult for most people to relate. Personal stories, though, frame our individual experiences in a way that lets others connect and find diagnostic clues that may have been missing. Isabel Jordan, the mother of a son with a rare disease, credits reading a patient’s blog to help her finally see the pattern in symptoms in her own son’s life, which set them on a new diagnostic path.

“As a parent of a child with a rare disease I’m constantly looking for patterns, for clues, for ideas of what could be next in our diagnostic journey,” she writes, “I look for researchers, doctors, other connected parents to see what they are posting. It was through reading someone else’s blog that I could finally see the pattern in symptoms in my own son’s life. Connecting the dots by seeing them in someone else let me provide valuable clues to our own clinician researchers and now we’re heading down a new diagnostic path. Would I have seen them anyway? I don’t know. But I credit my connections on social media for helping me keep my eyes open to new ideas”.

In the case of rare diseases, where doctors simply don’t have the answers to patients’ questions due to low patient numbers and, consequently, insufficient research into the disease, it is the patients themselves who are banding together to find the answers they need. Katherine Leon, an SCAD (spontaneous coronary artery dissection) survivor, leveraged the power of her virtual community to find the cause of her rare heart disease, and prevent it from happening to others. At the time of her diagnosis, SCAD was a poorly understood and under-researched condition. Physicians had no clinical studies on which to base treatment plans. Katherine connected with fellow SCAD survivors through social media and used their collective voice to do what hospitals couldn’t – to launch research at the Mayo Clinic. Leon credits social media as a key research accelerant. “Social media absolutely gets the credit for making scientific study of SCAD possible” she says, “in 2003, my cardiologist told me I would never meet another SCAD patient. It was just too rare. Today, I “know” more than 1,000 fellow survivors thanks to Inspire, Facebook ‎and Google”.

If stories are the life blood of an online patient network, a strong sense of community is at its heart. Members share an emotional connection to each other and a sense of shared experiences. They have a feeling of belonging to and identifying with the community, believing they matter within the community and they can influence and be influenced by them. Diabetes patient and advocate, Renza Scibilia believes that “there can be real solidarity when you are part of an online community.” She writes, “one of the reasons social media is so powerful is because of the way it connects people. By removing all the constraints that would normally prevent people from sharing, we form connections based on shared experiences and familiar stories”.

What does the future hold for virtual patient communities?

In David Weinberger’s book, Too Big To Know, the author argues that we are in a new age of “networked knowledge”; meaning that knowledge – ideas, information, wisdom – has broken out of its physical confines and now exists in a hyper-connected online state. Translating Weinberger’s argument to healthcare, the narrative is one in which the uptake of social media signifies a radical transformation of established notions of patienthood, with patients now situated within connections to other patients, family members, carers and healthcare professionals, creating a new social health experience.

CEO of Smart Patients, Roni Zeiger M.D., is convinced “that our next exponential leap in medical progress depends on us learning from networks of micro-experts.” The learning that begins in virtual patient communities can quickly translate to offline activity. Corrie Painter knows first-hand the power of tapping into a network of micro-experts.

“When people find us now”, she writes, “it actually might change the course of their disease. We have sent so many people to the same doctors that they have become clinical experts. These doctors now understand nuances of this disease that weren’t possible when only a handful of angiosarcoma patients would come through their clinics each year. Patients who get treated at these large volume centers bring the knowledge from these clinician experts to their local doctors. As a result, the patients are driving expertise in this rarest of rare orphan cancers, and that expertise is filtering out into local clinics. All because of our collective need to connect with others diagnosed with angiosarcoma”.

In the future, new online tools will come and they will go, but our innate desire to reach out, to connect, and to help one another will remain. It’s people who ultimately build communities, not technology. The communities may be virtual, but they are no less real. It’s still individuals speaking to other individuals, people helping other people. What’s changed, to quote Sussanah Fox, Chief Technology Officer at U.S. Department of Health and Human Services, is that we now do it at the speed of internet connectivity. Fox thinks that “the most exciting innovation of the connected health era is people talking with each other.” That may sound simple, but as the stories in this article illustrate, talking with each other can have profound and far-reaching effects in our connected digital age.

 

 

8 Beliefs That Can Hold Caregivers Back (from reaching out for help)

Family caregivers too often suffer from two very common things: overwhelm and isolation. Or, to it put another way, exhaustion and loneliness. So often, the nature of illness and trauma not only disrupts our normal ways of living, but also disrupts our connections with people who care about us. Caregivers who reach out for support gain the benefits of lessening their burdens and of feeling the warmth provided by people who care.

Too often, caregivers hold back from reaching out because of beliefs they have about doing so:

  •  Nobody else can do what I do for my loved one.
  •  My loved one won’t accept help from anyone but me.
  •  I’m too busy to even begin to think about doing anything more – even reaching out.
  •  The moment I start reaching out, our family will lose our privacy.
  •  I’m afraid of imposing on people.
  •  Reaching out shows weakness; doing it yourself shows strength.
  •  I’m afraid that nobody will come forward to help me.
  •  Since I’m able to handle things now, I’ll be able to continue to do so.

These, beliefs, while completely understandable and very common, are neither healthy for you as a caregiver or for your loved one. They get in the way of your resilience and your capacity to sustain yourself for however long your caregiving is required. Each week, I will be focusing in on one of these self-limiting beliefs and invite you to come along with me in exploring those that you are now willing to let go of and change into ones that help you not only survive, but thrive.

So let’s get started:

Nobody else can do what I do for my loved one

Think of the whole range of “things” you are currently doing. First think of the practical ones: dressing, managing and administering the meds, shopping, preparing, serving and cleaning up after meals, assisting with bathing and toileting, and so on. Now focus on the emotional and spiritual ones – showing love, being a trusted confidant, giving emotional support and comfort, etc.

Nobody else can do these things exactly how you’re doing them or would your loved one experience them in the same way if they were done by people other than you. No one else is so attuned to your loved one’s needs and preferences and, most likely, your loved one is most receptive to your way of doing these things. And, no one else would be as committed to your loved one’s comfort and be as vigilant as you are. This much is true.

But, the trap here is believing that, since no one else can do things the way you do, that no one else can do them or do them satisfactorily for you and your loved one.

Let’s take a look at some of those practical things that I listed above. Take one area for starters, e.g. grocery shopping. These days, it’s not like the days when our mothers used to look the butcher in the eye and tell him she wants a better cut of meat than the way he did it last week. Shopping simply means meal planning, list making and going out and getting the groceries – all very delegatable tasks. When you think about, I think you’ll agree that many if not most of the practical things can be done by others. Not necessarily with your intimate knowledge and way of doing things, but in their own ways. And, similarly, other people will bring their own and distinctly different ways of providing emotional and spiritual support as well.

Bottom line: Is this a belief you’ve been holding? If so, how does it serve you? How does it hinder you? How might you re-write that belief so that it serves you better? For example, “There are some things that other people can help with. I’m going to try this out with some simple things.” What practical step can you take to try out that new belief this very week? Let us know – by commenting on this blog. You’ll help yourself and other caregivers by doing so.