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.

Running From Cancer – And Towards Lower Risks

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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

Why Your Patient Story Matters

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“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.

The Power of Content Curation for Healthcare Communities

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“Getting information off the Internet is like taking a drink from a fire hydrant” – Mitchell Kapor

Information is power and patients are becoming more empowered through increasing access to medical information online. However, one of the biggest challenges we face is trying to filter the vast repository of online content to find trustworthy content. As cancer research advocate and health blogger, Debra Madden (@AdvocateDebM), points out, “for better or worse, information is much more accessible today than it was in the late 1980s thanks to the Internet. But a major challenge now is separating the wheat from the chaff, being able to identify the many resources on the Internet that are not reliable and recognize those that are reputable sources of consistently high-quality medical and health information.”

Instead of more information what we really need is more accessible, understandable and credible information on which to base our healthcare decision-making. One solution is to curate reliable, up-to-date medical information in a format that is easy for patients to access, digest, and understand. Content curation is defined as the process of gathering information relevant to a particular topic or area of interest.  While this definition sounds simple, there’s a world of difference between simply gathering information and being an effective curator. A good curator knows how to find, aggregate, and synthesize reliable information, putting it into context for their communities and sharing it in a format that is easy to access and understand. Beth Kanter, a specialist in social media communication for non-profit organizations, characterizes a content curator as someone “who offers high value to anyone looking for quality content because finding that information (and making sense of it) requires more and more time, attention and focus.”

Health science blogger, Lisa DeFerrari (@after20yrs), devotes time on her blog to sharing the latest research on breast cancer. “A lot of the inspiration for what I do on my blog, and a lot of what I’m learning too, comes from the people I meet in my advocacy work and online”, she says. “Many of us have an interest in knowing what’s going on in cancer research and understanding what kind of progress we’re making against this disease. I believe that being up to date about the major developments in research empowers us in taking care of our own and our loved ones’ health.” Lisa describes the activity as one in which she shares her own learning process with readers, “I felt that this was an area where I could contribute given my own experience with breast cancer and my advocacy work as well as my interest in research. I look for updates that seem interesting and relevant from a patient perspective and share what I see as the basic, need to know, details for my readers.”

Mayo Clinic-trained women’s heart health activist and heart attack survivor, Carolyn Thomas (@HeartSisters) was once described by cardiology conference organizers as a ‘knowledge translator’. “I love that job description,” she says, “I like trying to make sense of complex medical gobbledygook. There actually is a social science readability rating scale called “SMOG: a Simple Measure of GobbledyGook!” – one that most medical journals would fail, by the way.”

The ability to curate trusted content is a key skill for patient advocates. Hereditary cancer advocate, Amy Byer Shainman (@BRCAresponder), believes “patient advocates not only have a responsibility to curate trusted content but that it is an imperative if you are even going to be calling yourself a patient advocate.” Not only is curation of value to the health community, but it also benefits the curator by enhancing their credibility and leadership among their peers. Amy, Carolyn, Lisa, and Debra are all leaders in this field. In interviewing each of them this month, I found they were eager to share their tips and recommendations on developing the skill of content curation. Listed below you will find a summary of their recommendations, alongside my own tips for effective content curation.

Eight Steps to Effective Content Curation

1.) Consider the source

Curate content from reliable and credible sources only. This is the most important first step in curating trustworthy content. Debra’s first step is to go directly to the small library of oncology texts she has built over the years (e.g., DeVita, Hellman, and Rosenberg’s Cancer Principles & Practices of Oncology, which is considered by many to be the definitive oncology reference). “However”, she says, “even if these texts weren’t available to me, there are multiple exceptional online resources that are easily accessible. These sites are available to anyone with access to an Internet connection, are typically free without subscription costs, and provide links to additional helpful sources of information and references on related topics.”

Debra recommends conducting online searches of medical journals published by professional cancer associations, including the American Society of Clinical Oncology (ASCO) and the American Association for Cancer Research (AACR). She advises whenever possible, for research purposes, it’s best to obtain access to full-text journal articles versus solely the abstracts. Debra also recommends conducting an online PubMed search. PubMed comprises greater than 26 million biomedical literature citations from MedLine, which is the U.S. National Library of Medicine (NLM)’s bibliographic database. “PubMed provides free access to abstracts within Medline as well as links to full-text articles, importantly, in some cases, access to the full-text journal articles is also provided for free. Unfortunately, in other instances, although full journal articles can be accessed by linking from the abstract in PubMed, the publishers charge a fee for obtaining the full text, which can become extremely pricey.” Debra’s tip in such cases is to conduct a Google search on “full text medical journal articles free,” which will return sites that provide links to the increasing number of journals that provide free online full-text articles.

Her final recommendation is to conduct a Medscape search. “After a free, one-time, and simple registration process, Medscape provides access to professional, original medical content that includes comprehensive review articles, patient education articles, journal commentaries, expert columns, and medical news”, she says. “In addition, Medscape enables users to select their preferred specialty which then delivers a personalized site with topics of most interest.”

Amy recommends finding a go-to source for credible information. “My go to patient advocate for the latest hereditary cancer/BRCA research is Lisa M. Guzzardi, RN (@LguzzardiM)”, she says. “Lisa is a HBOC (Hereditary Breast & Ovarian Cancer) patient advocate dedicated to providing up to date evidence based research for consumers at risk and also clinicians. She is on top of all the latest scientific journals and research pertaining to HBOC.”

2.) Subscribe to newsletters and alerts

Lisa told me that she relies on a number of sources that she tracks for the latest articles and reports about cancer research developments, including medical news aggregators, cancer research news subscription services and google alerts. “I scan these regularly”, she says, “looking for those stories that seem to have the most potential interest or impact from the patient perspective.”

Set up Google Alerts for the healthcare topics of interest to your community. Add Google Scholar which indexes most peer-reviewed online journals of Europe and America’s largest scholarly publishers. You can also use tools such as Flipboard and Newsle and subscribe to other health-related curators on Scoop.it a curation platform.

3.) Learn how to read behind the headlines

Every day we read headlines heralding medical breakthroughs, and it’s important to know how to discern the true reality behind the headlines. Does the news item support its claims with scientific research? If so, read through the article to find the most important findings from the study. Look for expert commentary from physicians or other qualified healthcare commentators within the article. Note if the author mentions any limitations concerning the research (again they often don’t). Most peer-reviewed articles list their research’s limitations in their conclusion, so you may need to dig deeper by reading the original published journal article. Debra cautions that “the facts are not always convenient, and those who speak out in the popular media may have an agenda or bias. Unfortunately, the reality is that when discussing health and medical research, screening, interventions, etc., many news stories tend to emphasize and often exaggerate potential benefits while minimizing or even ignoring possible harms. In addition, it’s important to recognize the different types of bias that may also impact how research is designed and implemented, how data is collected and analyzed, and/or how or whether results of such research are presented in the medical literature. Understanding potential research bias and how it may impact study results and its reporting enables advocates to critically review scientific literature, an important skill in evaluating and accurately presenting the evidence.”

4.) Cite the original source

Always cite the original source when curating content. Read Citing Medicine: The NLM Style Guide for Authors, Editors, and Publishers to learn more about how to publish citations.

5.) Provide context and add perspective

Content curation is not about collecting links or being an information pack rat; it’s about being able to summarize the key points, adding your own perspective and putting things into a context that makes sense to your community. Carolyn describes the process as “a combination of my own personal experience or opinion juxtaposed with what others before me have learned about this topic. What have researchers in the field found? What do physicians’ current treatment guidelines recommend? Or, how have other patients experienced what I’m talking about?” She points out, “I’m not a scientist, but I can now interpret a journal abstract pretty well and distil the key points in a simple, clear fashion. I never write things like “Studies suggest that…” without actually citing a credible reference for a study or two that support what I’m about to say.  And I look specifically for methodology issues (No women included in this study? Or only lab mice? – not interested!)”

6.) Publish to a content hub

You can post your curated content to a blog or you can use a content hub, as I do, such as Scoop-it. Creating a content hub is another opportunity to build a community of shared interest and amplify your content.

7.) Use the right tools

Some useful tools include Pocket, which integrates with 500+ apps for easy curation, Evernote, a cross-platform, freemium app designed for note taking, organizing, and archiving, and news aggregator app, Feedly.

8.) Tap into the power of social media

Share your curated content via your social networks and make it easy for others to share it too. Add a relevant hashtag and use a twitter scheduling tool like Buffer and Hootsuite to schedule tweets so that you can reach a global audience.

Final Thoughts

As you can see from these examples content curation is an important skill for patient advocates. Amy believes, “being well versed in the science of your own health story plus the ethical implications, philosophical implications, and emotional components of your health story is key to being a credible patient advocate.” To develop these skills, Debra recommends the scientific training and educational opportunities offered by nonprofit organizations such as the National Breast Cancer Coalition (NBCC)’s Project LEAD®, the Research Advocacy Network (RAN), and the Cancer Information & Support Network (CISN); as well as conference-based educational opportunities, such as through the RAN’s Focus on Research Scholar Program, which culminates with attendance at ASCO’s Annual Meeting; the Alamo Breast Cancer Foundation’s Advocate Program as a component of the Annual International San Antonio Breast Cancer Symposium (SABCS); and the Drug Information Association (DIA) Patient Fellowship Program.

I leave the final word to Lisa, who says that “as patient advocates we bring a different perspective to the discussion.” That perspective is an important one, and learning how to do it well is a way to add inestimable value to our communities.

Editor’s Note: For a comprehensive list of the Best App-Making Software, please click here.

Stay On Top Of Your Health – With The Help Of a Smartphone App

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After visiting the doctor, you are usually on your own. You are responsible for taking your meds on a regular basis and for keeping track of your symptoms. This can be challenging in everyday life – especially when you need to take more than one pill per day. According to a study by the World Health Organization 50% of all prescribed meds are either taken incorrectly or aren’t taken at all. But non-compliance can be fatal: in the US about 125,000 people die annually because of not following the doctor’s prescription[1]. This is why it’s so important to take your meds as prescribed and to keep track of your vitals and symptoms. But it’s also just as important to take over the reins when it comes to your health. Because it’s your body and your health you need to stay on top of it. I would like to introduce you to a smartphone app that can simplify how you manage your health – a digital assistant that helps you to stick to your treatment plan: MyTherapy.

[1] http://www.medscape.com/viewarticle/818850

MyTherapy_Reminder

I know exactly what you think: “Wow, just another pill reminder.” But MyTherapy is much more than that. MyTherapy is a health app that reminds you to take your meds, check your vitals and to get active. In short: with MyTherapy you have your whole therapy in one app. Therefore, the app translates your therapy into a simple to do list and motivates you to check off your tasks and to empty the list. The integrated scanner makes it easy to find your meds by scanning the barcode on your medication package.MyTherapy_Scanner

The built-in health report allows you to stay on top of your vitals. You can print your report and share it with your doctor. This is a great way for you to take your health into your own hands.

MyTherapy_Graph

MyTherapy is made in Germany and strictly protects your privacy: you can use the app without subscribing and your personal data won’t be shared with third parties. MyTherapy is free of charge and can be downloaded on the Google Play Store and App Store. The app is available in English, German, Spanish, French and Italian. Further, MyTherapy is developed in cooperation with patients and established doctors. They all work together to constantly improve the app. Several studies – among others with Germany’s largest university hospital Charité Berlin – confirm MyTherapy’s positive impact on medication adherence and its outstanding usability for patients of all age groups.

Building A Digital Ladder Of Engagement

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In my previous articles, I have written about using social media to connect with other patients and advocates, communicate with health care professionals, and access information to help make more informed choices about our own and our loved ones’ care. I am a passionate believer in the transformative potential of social media in healthcare, but I am also aware that each of us has differing levels of digital skills. Whether you are taking your first steps on the ladder of digital engagement, or you have reached the top, digital literacy is an important skill in your patient empowerment toolkit.

This article is for those of you who want to climb further up the ladder to become more digitally savvy with social media. And for those of you who have already reached the top, before you click away from the article believing this isn’t for you, please stop a moment. Think back to when you took your first step on that ladder. Remember the day you sent your first tweet, wrote your first blog post or asked a question in a Facebook group? Were you encouraged and supported in taking the next step in digital engagement? Was it a steep learning curve? Or was there someone to reach out a hand to help you climb the next step? If we are to truly call ourselves patient advocates, isn’t part of our role to help bridge the digital divide for all patients? I want to encourage you to think about how we might work together to extend a helping hand to those patients and their carers who are just starting out online.

What is Digital Health Literacy?

Digital health literacy is the ability to use information and communication technologies to find, evaluate, create, and communicate health information. It builds upon a foundation of health literacy, which is the degree to which individuals have the capacity to access, understand and use information in ways that enhance health. Reading these two definitions, it becomes immediately clear that those who have limited skills in either area are at a critical disadvantage when it comes to managing their own and their family’s health. Giving people access to relevant health information – and support in using that information – will help individuals make more informed decisions about their health care. Increasingly access to information and support is to be found online.

First Steps

If you are new to patient advocacy what first steps should you take to get up to speed? A good place to start is by gaining a better understanding of what it means to be an empowered patient. The Patient Empowerment Network has recently teamed up with Intake.Me to bring you their ePatient courses. These virtual classrooms are designed to help patients take those first steps on the path of patient engagement and advocacy. Follow this link to take the first two classes and be sure to check in regularly for more classes.

When you are ready to take your next step on the digital ladder, it’s time to join a social media site. Social media encompasses social networking sites (such as Facebook, Twitter, LinkedIn), blogs, wikis, video and photo sharing sites (such as Flickr, Pinterest, Instagram, YouTube), social bookmarking sites (Reddit, Digg), online communities, and user-generated content sites. With so many channels to choose from it might seem overwhelming at first to know where to begin, but as with any new skill start small and you will build up your expertise with time. Facebook and Twitter are the two of the most popular channels for healthcare conversations. You may already have your own account on these platforms, but if you haven’t it is very easy to set one up. Simply go to www.facebook.com and https://twitter.com/signup to sign up. Both have helpful step-by-step instructions to guide you through the process and at any time you can simply click on the “Help” button if you get stuck.

Facebook

On Facebook you can connect with other patient advocates and join Facebook groups related to your disease or condition. Many organizations have a Facebook presence and by liking their Facebook page you can keep informed of their activities and find other patients to connect with. As Facebook is a public platform and everything you post there can be viewed by a public audience, it’s important to consider the level of privacy you are comfortable with. You can adjust your privacy settings in Facebook at any time so your posts are visible to an audience of your choosing; for example “friends only”; “friends of friends”; or “public”. If you decide to set up your own page or group for your cause, you can easily do this in Facebook. Visit www.facebook.com/pages/create for instructions.

Twitter

While Facebook groups and pages are useful resources for patients, Twitter takes the healthcare conversation to another level. Think of it as a digital town square. Here you have a greater mix of patients, physicians, healthcare professionals, medical researchers, and the public all coming together in one virtual space to discuss healthcare matters.

Your Twitter profile is the first place someone will look when they go to your profile. If they find only a default Twitter picture and no bio details, your advocacy credentials may be called into question. Complete your profile by adding your name, a picture, and some brief details about your advocacy work so people can learn more about you.  It’s a good idea to listen first before leaping into the Twitter fray. This is true for any new community, whether virtual or in real life. This way you can understand the normative interactions existing on the platform. You don’t even have to tweet to learn from Twitter; there is a lot to learn from just following the right people but your experience will be richer if you join in with others in their conversations. If you are not sure what you should tweet, try something simple like introducing yourself, @mention someone you already know on Twitter, or retweet (RT) something that will be helpful to your followers to get your first conversations started.

Find People To Follow On Twitter

Start by following the Twitter accounts of organizations and groups related to your disease or interest. Go to their website and click on the Twitter follow button if they have one. Twitter will also populate your account with suggestions of similar groups and individuals on Twitter. Pretty soon you will have built a list of relevant accounts to follow. It’s a good idea to organize these accounts into lists; e.g. “organizations”, “researchers”; “patient advocates”; “hospitals”. You can create your own lists or subscribe to lists created by others (here’s a list of patient advocates on Twitter which I created). Find people who can serve as online role models for you. If you are already a seasoned Twitter user, reach out to someone new and offer to mentor and guide them.

How To Find Health Related Conversations On Twitter

(1) Advanced Search

The easiest way to find conversations of interest is to click the native search facility at the top of your Twitter screen and enter your keyword – for example “diabetes”. You then have a further option of performing an Advanced Search. This allows you to narrow down your search using parameters such as specific keywords, language, people, location, and date range.

(2) Hashtags

A hashtag is simply a keyword preceded by the #symbol. Hashtags create a hyperlink which will bring up every public update tagged with the same hashtag keyword. To create a hashtag, simply place # before a word; e.g. #diabetes. Familiarize yourself with the relevant hashtags related to your topic of interest. Hashtags are a useful way to search for health related topics and organize conversations around a keyword topic.

(3) Twitter Chat

A Twitter Chat is a public Twitter conversation around one unique hashtag. This hashtag allows you to follow the discussion and participate in it. Twitter chats can be one-off events, but more usually are recurring weekly chats to regularly connect people. The chat will be hosted and the host will ask questions along the way to stimulate discussion and sharing of ideas. There are chats for most disease topics and a full list can be found by searching the database of the Healthcare Hashtag Project. This is also a useful resource to find Twitter users to follow. In addition you will find past transcripts of chats on the website so you can familiarize yourself with the chat and its norms before taking part.

When you are ready to join in a chat, login to your Twitter account at the specified time and search for the relevant # (e.g. #diabeteschat). You don’t have to tweet; you can just follow the conversation, especially if you are still getting used to tweet chats, but do introduce yourself and mention that you are new to the chat. Twitter chats can be quite fast-paced and you may feel as if you aren’t keeping up with every tweet. Don’t worry. You can always catch up at your own pace later by reading the chat transcript available after the chat has finished. You can also use a “chat-room” tool, such as TweetChat to help you focus solely on the chat – only tweets with the hashtag will appear on your screen so you can filter out any other twitter conversations not related to the chat.

(4) Conference Live-Tweeting

Twitter is fantastic for taking the content of conferences beyond the walls of a conference venue. It is becoming more popular for conference organizers and attendees to “live-tweet” sessions directly from the conference. You can follow along on Twitter using the conference hashtag. Many conferences register their hashtag with the Healthcare Hashtag Project or include the hashtag on their conference website.

These are just some of the many ways in which your patient advocacy can be enhanced through social media. If you have been hesitant or unsure where to start, I encourage you to take that first step by setting up an account on Twitter or Facebook. Don’t be afraid to reach out to others for help along the way.

A Rising Tide

The aphorism “a rising tide lifts all boats” was first used by President John F Kennedy in a speech to describe the idea that when an economy is performing well, all people will benefit from it. This wisdom can equally be applied to the empowered patient movement. One of the ways in which we lift each other up is through strengthening our connections online. So ask yourself, who will you lift up today?

5 Simple Steps to Become a Twitter Pro

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When it comes to using Social Media, especially twitter, there is no need to worry. It is a lot easier than you think. If you follow these 5 simple steps, you can become a twitter professional in no time.

1) Create an Account

Go to www.twitter.com, and create a free account by clicking the ‘Sign Up’ button in the top right of the page. Enter your name, phone number or email, and password in the space provided. Then, chose a user name which will become your twitter handle. (See definitions below.)

2) Finish Your  Profile

  • After you have created your account, you will be prompted to add your areas of interest. The areas you choose will then be complied into suggestions for whom you could follow. You may either choose to follow all, some, or none of these accounts.
  • Next, you can upload a photo of yourself to your profile.
  • Afterwards, ‘People you may know’ appear as more suggestions for people to follow. This list is compiled from contacts from your email or phone address book.

3) Learn the Twitter Lingo

  • Follower – You “follow” other users to see their updates on your home page, and they can follow you to see yours.
  • Handle – A “handle” is your twitter username. This is the name people will identify you as. (Example: @power4patients)
  • Hashtag(#) – A “hashtag” is used in front of keywords to provide context, and to make them easily searchable for people looking for information on a specific topic. (Example: #PowerfulPatients)
  • Mentions(@) – You use the “@” sign directly in front of someone’s user name/handle to direct your tweet towards them. It will also appear in their “@Mentions” section on their Twitter account. (Example: Hey! @power4patients check this out!)
  • Retweet (RT) – When you come across a tweet you like and want to share with your followers, you can click the “retweet” button
  • Tweet – A tweet is the message you send out to your followers. Each tweet must be 140 characters or less
  • Tweetchats – Tweetchats are arranged meetings often occurring regularly on a specific time/date. A moderator oversees the conversation and focuses it on a specific topic. You can follow these chats or participate by searching or tweeting with the designated hashtag.
  • Reply – A reply is a response to another user’s Tweet that begins with the @username of the person you’re replying to. You can reply by clicking the Reply button on a Tweet.
  • Like – Likes are represented by a small heart. They are commonly used to show appreciation for a Tweet. You can see someone’s likes by visiting their profile, and your likes are also visible on your profile.

4) Composing Your First Tweet

A tweet may contain photos, videos, links, and up to 140 characters of text. You begin by clicking the icon button or typing directly into the ‘What’s happening?’ text bar. Don’t forget to use hashtags (#) to provide context or mentions (@) if you directing a tweet towards someone.

You can also shares articles you find on your favorite sites, such as New York Times by clicking on the Twitter icon. When you click the icon, a tweet will automatically generate making it easy to share with your followers.

5) Search

Using the ‘Search Twitter’ feature in the top right of your homepage allows you to look for specific tweets, users, or ongoing conversations.

References

www.sproutsocial.com/insights/twitter-term-definitions

www.support.twitter.com

Coping With Anxiety and Depression

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An expert panel discusses different methods to cope with anxiety and depression through all the phases of a cancer journey. Jane Williams, MSN, RN, FNP, says one of the best ways is to communicate openly with your healthcare team and loved ones. Letting them know how you feel and what you need can lead to you feeling better. Remember that you’re not alone in your journey, and sharing your emotions can help you figure out what works best for you, whether that be running, meditating, etc. Watch the full video below for all the panel’s advice on coping with anxiety and depression.

Coping With Anxiety and Depression from Patient Empowerment Network on Vimeo.

An Ounce of Prevention is Worth a Pound of Cure

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An ounce of prevention is worth a pound of cure. It creates a sense of awareness and provides a window of opportunity for you. Sometimes it is a matter of accountability and sometimes it is about breaking old patterns.

When my father was diagnosed with heart disease many years ago, we started eating and cooking differently. That didn’t change my dad’s ways and he ultimately died of heart disease at 62 years old. I remember he used to eat and drink things that weren’t good for him and joke about it with me and then say: “Don’t tell mommy.” That was his choice. I made a different choice long before his passing to eat healthier. If I did eat things that weren’t healthy, my body sent signals to me that these foods weren’t acceptable to me anymore.

When my mom was in treatment for ovarian cancer I found myself in Medical Libraries looking for clinical trials that would save her. When she passed it was a catalyst for me to look into prevention for my own health. I went for genetic testing at NYU Medical Center. While I don’t carry the gene for breast cancer, I have to be cautious because of the history of cancer in my family. I diligently pursued my annual gynecologist exams and additional ovary scans and blood work. Additionally, I followed up with my 6-12 month mammograms.

The result of my taking my own action on proactivity toward prevention was a diagnosis of stage 1 invasive lobular breast cancer. To take it a step further, I was originally advised by my breast surgeon to only have one breast removed. I followed my intuition and chose a double mastectomy and that resulted in even more prevention. When my surgery was completed, I was told that the other breast was pre-cancerous. If I hadn’t been my own best advocate, I would have found myself in the same shoes at another time.

Since I was diagnosed at an early stage my Oncotype couldn’t justify chemo treatment either way, but I remain on Tamoxifen therapy for probably another seven years.

I have also been discussing ovary obliteration with my oncologist and another specialist because of my lineage of cancer. In all likelihood, I will have my ovaries removed sometime this year.

When I finished treatment for breast cancer and had reconstruction surgeries, I thought to myself: “Now what? Hmmm, I have focused for a year and a half on my breasts, now it’s time to get back to the taking care of my other body parts and I got back on schedule with my dentist, gynecologist and internist all in the name of self-care and prevention as I lead my busy life balancing career, family, fun and connection with others. I knew that if I didn’t exercise extreme self-care, I would be much good to others.

About a week ago, I am finished up 4 and 5 of Moh’s surgeries to remove skin cancers from my body. In order practice prevention, we have to know our bodies, face fear and get checked out.

In some cases, I do know that even prevention is not a cure, because my mother was one who religiously (not in a hypochondria mode) went to all of her doctors’ appointments, pap smears, etc., and still she was diagnosed with late stage ovarian cancer. The bottom line is prevention cannot hurt us like lacking in self-love will.

So….., what can YOU do to take an active part in your health? What does practicing prevention look like to you? It could be something as simple as changing your diet or scheduling doctor’s appointments that we hesitate to make because we are always caring for someone else. It could also be taking care of yourself in terms of mind and spirit and working on stress reduction? In what ways can you reduce stress and overload in your life?

This blog is being shared to create awareness and remove fear. Know your body! You are the only one who does. Practice prevention and self-care. Put yourself first so that you can be around to care for others. That is my message and my gift to you on this beautiful day!

If you need help in this area or any other area of your cancer experience, reach out to me gina@newbeginningswithgina.com or visit my website: www.newbeginningswithgina.com.

I look forward to hearing from you!

Xo Gina

Social Media in Hematology

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Interview With Dr. Laura C. Michaelis (@lauracmichaelis), MD Clinician and Clinical Researcher at the Medical College of Wisconsin

In an interview with Dr. Laura Michaelis, she discusses how social media can be great tool to connect with other patients with the same disease.  Dr. Michaelis says social media has really revolutionized the way patients to patients, patients to doctors, and doctors to patients are communicating. Watch the full video below to hear the multitude of ways social media can benefit patients and doctors.

Social Media in Hematology from Patient Empowerment Network on Vimeo.

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Andrew Schorr:

I just want to get a show of hands of something for a second. How many of you go on the internet to find information for your MPN? Most everybody. Okay. And one other one. How many of you have connected with other patients, like in social media where you’re somehow part of a discussion? Okay. I just want to talk about it and I know that actually Dr. Michaelis, you actually encourage people. This whole connection, Patient to Patient, you’re a big fan of.

Dr. Michaelis:  

Oh yes, absolutely. I actually think social media has really revolutionized the way that patient to patient communication happens, patient to doctor communication happens.

And doctor to patient communication happens. There’s actually a nice paper published out of MD Anderson recently that looked at hematologists and social media Twitter accounts and how people communicate that way. There’s going to be a talk at our national meeting, the American Society of Hematologists, teaching doctors how to use Twitter and use social media not only to talk to one another, but also to talk to patients and also move policy change; policy in certain conditions.

I know a lot of patients who have Facebook groups where they communicate with one another. That can be an invaluable source not only of information but also comradery to take the loneliness out of having a very rare disease where you don’t feel like anybody else knows what you’re going through. We’ve had little town meetings via Twitter where people share information or get communication that way.

I think the sky’s the limit the way that technology is going and how we really branch out from being in our own institutions and just talking to one another within that institution about caring for patients or moving the disease forward. And now we’re looking at a whole different level of communication.

Andrew:   

I’ll mention just a couple of resources for you. So first of all, if you happen to be in the PRM-151 trial, this is the queen of a Facebook group for that. And what’s been happening now is on Facebook, if you’re familiar with it, some people are forming pages and groups around the trial they’re in. it’s not the drug company; it’s not even the clinic. It’s the patients actually in the trial. It’s kind of cool, isn’t it? Yeah, it really is. And then a couple of other resources.

There’s one that started in England and is proliferating around the world called HealthUnlocked.com. The folks from England with MPNs, which was started by a peer of theirs, Dr. Claire Harrison in London, she helped working with patients start a group called MPN Voice.

Dr. Michaelis:   

Yes, one other thing. I would also recommend there is a national resource called ClinicalTrials.gov. This is available online. This is a completely updated list of clinical trials and you can search it by location or by center.

So if you’re getting your care in Akron, you can look at what clinical trials are available in Ohio, or what clinical trials are available 250 miles from me. And then you can search down by myelofibrosis or PV, etc. So I think that and the clinicaltrials.gov and the NCI also have good information on that.

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Virtual Patient Communities

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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)

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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.

 

 

 

 

 

Twitter Tips and Resources for Cancer Patients

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The “Twitterverse” is pretty mainstream now and not just for the younger generations any more. Of the many, many uses for twitter, cancer information, education and support are gaining ground. Twitter is fast, easy, mobile and instantly gratifying.  Information literally at your fingertips.

Several articles have been published on the increased use of twitter by cancer patients, from cancer patients tweeting through chemo, “power” cancer patient tweeters in Japan, and a controversial article in ASCO about a breast cancer patient tweeting about her disease.

Tweeting is easy. Set up an account and go! If you are interested in getting some good information back from Twitter though, you should choose carefully whom to follow.

All news sources are on Twitter, so it’s easy to find them and follow them.  All top cancer medical centers are on Twitter and they are a great source of information on cancer research, news, clinical studies and basic medical information. Here a just a few to start with:

@MDAndersonNews

@DanaFarber

@SeattleCCA

@MayoClinic

@MoffittNews

@LurieCancer

Patient support groups for cancer patients are numerous and you can usually find one that is specific to your illness. Again, here are some to start with:

@StupidCancer – mainly for young cancer patients

@ImermanAngels

@MyelomaCrowd

@MyelomaTeacher

@MyBCTeam – for breast cancer survivors

@CancerSupportCM

@PCFNews – Prostate Care Foundation

@PanCan – Pancreatic Cancer Action Network

There are many, many more – this is just a small sampling. To find specific groups or people to follow, you should use the search engine on Twitter or do a hashtag search and see what comes up. For instance, if you are interested in following groups or people that tweet about stomach cancer, do a search and research their profiles. For instance, I just searched “stomach cancer” and this is what came up:

You can now go to these twitter profiles and see if these are some people that you would be interested in following.

So you can go to these twitter profiles and see if any of them appeal to you.

It’s quite simple and you can follow some groups and people for a while and then “unfollow” them if their tweets are not what you were looking for. Once you follow people or groups that you know have the same interests as you, you can use them as your “news stream” and tailor your stream to the kind of information that is most suited to you.

Twitter is easy, quick and gets to the point right away (it has to – with only 240 characters allowed by tweet!) It’s a great way to keep informed and have custom-made information at your fingertips.