January 27th, 2012

Mission Statements for Health Activism

by Amanda

Today we have a post by Sharifa that really gets to the heart of January goal-making: creating a Mission Statement for yourself and your community. In order to really get things done and stay on track with your Health Activist brand. Have you written a plan for what you want to accomplish? It’s worth a shot – especially when thinking of how you want to grow your community! –Amanda

 

Visualization: A Critical Step Toward Materialization

by Sharifa Simon-Roberts

As we are in the first month of the year still, I thought about how I could develop a post that would incorporate the resolutions of many Health Activists for 2012. Therefore, my mission here is to explore the very common term ‘mission statement’ not as it pertains to corporations but I wish to tailor this common concept to Health Activists. Whether it is for you personally, your blog, or for advancing your communities or others efforts directly related to raising awareness of your health community. I thought I’d share some suggestions with you to see what you thought – especially since this is a topic that we can continue to revisit all year as our Health Activism evolves.

 

First let’s breakdown what a mission statement is. After having studied Principles of Business and reading several mission statements, this is my interpretation: A mission statement is a declaration presented by an entity (it can be an organization or individual) explaining its purpose, goals and principles, and clearly identifying its target market.

 

I believe strongly, a mission statement can enhance the group, person, or venture it has been created for because it helps you to refine and focus on the intangible parts of your mission that are so important.

 

I expanded a bit and added some of the benefits of a mission statement. Now, I trust (OK, it’s more like hope) you are eagerly awaiting the revelation of… (Drum roll please) – How can you create a mission statement? Keep in mind that the tips here can be adapted to suit your needs and wants – individual, community, organization, blog, etc. So here goes:

 

  1. Determine your mission or goal – it is understandable if it seems vast and wide at first but take some time to narrow it down and pinpoint the people you intend to reach and connect with. Here, you are adding clarity to what you want to accomplish as a Health Activist. Often, it helps if you jot down notes or even draw pictures as ideas come to you.
  2. Reaffirm your mission and reasons why you focused on a specific facet – you are reminding yourself what you set out to do and why. Affirmations can provide the stimulation you need later.
  3. Don’t be afraid to look back and alter your vision as you make progress – if along the road to creating that mission statement, you realize you want to modify your initial purpose, you should be flexible enough to make adjustments. Don’t worry – these changes do not mean you are indecisive or your goals were ill-defined at the start. It just means you are learning and being more specific. Recognize that changes can be a result of enlightenment, recent encounters you have had, or newly-acquired knowledge.
  4. After the identification, reassertion and improvement of your objective – it’s time to dedicate yourself to writing this powerful statement. You want your mission to be high-quality and truly represent any revelations you may have had along the way and the journey/ process that you have been through. Given the importance you place on this statement, I suggest you unveil your mission statement in fine form. After all, it is a time to celebrate!

 

I would like to get your input. As a Health Activist, what is your mission statement or the mission statement of your community? If this is an aspect which is missing, why not create one? Remember to put thought into it, as it now becomes a representation of you and/or your community.

For 2012, I vow to create a mission statement for Sharifa Simon-Roberts; yes, that’s right my personal mission statement. Stay tuned.

 

 

 

 

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January 26th, 2012

The Health Activist Awards Judging Criteria

by Amanda

It’s almost time for us to announce the official Health Activist Award Winners. We’s so excited to introduce these amazing folks – it’s been hard to keep it a secret (in fact, Susan and I haven’t even divulged the winners to the rest of the WEGO Health team). But it will be worth the wait.

 

Before we start the Health Activist Awards Ceremony on Tuesday, January 31st during our 3pm ET Health Activist Tweetchat (#HAchat) we wanted to share a bit more about how the winners were chosen.

 

As mentioned when we announced the judging, we worked hard to ensure that these awards would not be a popularity contest and that each Health Activist (no matter their audience size, condition or community, or media) had an equal opportunity to win. Even if nominees received numerous nominations – they had the same chance to win as someone who received just one nomination.

 

To make the Health Activist Awards extra special (and fair) – we selected panels of Health Activist Judges who were joined by a member of the WEGO Health team to decide the winners of each award. First, the judges were given a list of every single nominee to review and select their top nominees for a Finalist short list. These short lists were combined and entered as Finalists. Then all the judges met on a conference call to discuss who should win (and vet their favorites). It was a huge success – especially thanks to all of the Health Activist Judges who took their roles very seriously and worked hard to choose the most deserving Finalists.

 

After the Finalists were chosen and the conference call began, all Judges reviewed the Finalists according to the following :

 

 

At the end of the call, each individual Judge secretly scored the Finalists from 1-5 points for each of these 3 criteria and submitted their final scores. We, then, tallied and averaged all the scores and selected the official award winners based on whoever got the highest numerical score. It was an extensive process but an important one – and we’re really eager to share who came out on top.

 

But, because it’s not just about the singular winner – we are going to share who made it to the Finals. Over the next few days we’ll highlight each of the nominees who made it to the Judges’ short lists. That way we can celebrate everyone who made it as Finalists and build momentum before we announce the winner on Tuesday. So stay turned and thanks again to everyone who has helped make this such an exciting event!

 

 

 

 

 

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January 25th, 2012

#HAchat Recap: Health Activists Define “Awareness”

by Caitlin

For those of you who didn’t tune in to yesterday’s fabulous #HAChat, the topic was “awareness.”  What does awareness mean to you and your community?  For many of Health Activists, spreading awareness is what made them open up about their disease. KatharineS84 said, ”I’m excited for this topic because it’s the main reason I started opening up about living with #cysticfibrosis.“  However, in following yesterday’s conversation, it became clear that “awareness” doesn’t have a very clear definition. It takes on a different meaning depending not only on your perspective as a Health Activist, but also depending on your condition.  Awareness of diabetes will certainly differ from that of multiple myeloma, as will expectations of how aware others should be.  Some definitions from our chat yesterday included:

tmana “Awareness” means many things depending on context. We expect gr8er understanding from patients, activists, friends/family #hachat.

lizzmariposa To me, being aware of any health condition is a conscious decision we make to embrace knowledge, information, and the human factor. #hachat

ncrainbowgrrl T1: that there are actual people living with these conditions/ diseases and no, we don’t look any different…

kimmieCollas T1: recognizing that even if you don’t understand what we’re going thru, we ARE sick, not faking #HAchat

tmana T1. Also, that medical management technology is NOT synonymous with “cure”, and that costs incl physical, psych, social, and fiscal #hachat

So with so many different opinions and perspectives, how can we define such a broad concept? I’ve decided that awareness isn’t quite one thing, but a combination of many.  Here’s what I came up with:

Awareness isn’t quite understanding. According to @KatherineS84, “understanding comes with experience.”  Awareness is having a basic understanding of what a disease or condition is and how it affects the body and mind. It’s enlightenment and education.  It’s seeing past the condition and into the affected person.  It’s respect, empathy, and an openness and willingness to learn.  It’s a state of mind in others that makes you feel that you are not alone.

Awareness isn’t quite knowledge. If it was, then patients wouldn’t feel alienated or misunderstood by healthcare providers.  Doctors would understand pain and you wouldn’t be accused of faking. Patients would feel that they are heard and their experiences understood. If awareness was knowledge, then reading a text book would allow you to understand what it’s like to live with lupus, to survive cancer, to have diabetes. On your side, awareness is having the knowledge to understand what your doctor is saying, and to be an equal participant in your care. As NataliaElizabea said, “I think sometimes being aware goes hand and hand with being able to question the facts as they are presented read between the lines.”

Awareness isn’t the same for everyone. For some, it’s self-awareness, awareness of your condition and how it will come to affect your life. As KatharineS84 shared, “As a patient, I had to become aware myself before I could move forward. Denial can be a difficult hurdle, but it’s key.” And, similarly,  @ncrainbowgrrl noted, ”I also need to make sure I take care of ME while helping to educate others.”

For others, awareness means support. It means your friend/family member/caregiver has the understanding and the respect to be there for you even if they don’t quite understand what you’re going through.

For communities, awareness is recognition, acknowledgement of a condition and the physical, emotional and economic implications it has on those if affects.  For some communities expectations will be high, but for niche communities they will be lower.

sanmees Awareness can vary by community- the awareness goals for an unknown condition will be different than one with a lot of coverage. #HAchat

KatharineS84 @susanmees So true! For #cysticfibrosis, goals start out basic due to lack of knowledge of most people. #hachat.

Not only will levels awareness differ between people, but awareness is knowing that not all patients are the same.

tmana Certainly important to recognize that in some silos, there is a wide range of effects on people-living-with, from mild to devastating #hachat

GermanInAlabama A huge part of awareness for me is recognizing that there are many facets to each story/condition. There is no one size fits all #HAchat

Awareness isn’t always a means to an end. Awareness isn’t always about raising money, though it can play an important role in attracting donations.  It’s not necessarily about reaching a goal, such as a number of people educated about your condition. Awareness goals will also depend on whether you’re a patient, caregiver, healthcare provider, or a Health Activist:

lizzmariposa I think awareness goals are ultimately spurring curiosity in people to learn more, seek more, question more, HUMANIZE illness more. #HAchat

wegohealth T4.1 As Health Activists, we can learn more about others’ conditions & bridge gaps. We can teach others what works re: awareness. #HAchat

wegohealth Humanizing a condition & presenting the narrative piece is a great way to make awareness “stick” & people to really care – I think. #HAchat

Awareness isn’t just a state of being. It’s a continuum. As kimmieCollas shared,  ”Awareness is a spectrum – there is always something new to learn.“  It’s changing all the time depending on new drugs/treatments/test/procedures, and the especially by the way we can access information on the internet.  The level of awareness reached by each person will differ as well.  Some will stop at only a basic level, because as GermanInAlabama said, ” re:stopping at basic awareness: It’s easier. More comfortable because becoming more aware might mean becoming involved.” For others it will depend on their direct exposure to a condition.

Finally, why be aware?

bobutler T3: It’s bad enough to be suffering from something. It’s far worse to feel as though you’re suffering alone. #HAchat

Have any other thoughts or ideas of what awareness means? Share this post and start a conversation in your community.

See you at next week’s #HA Chat!

 

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January 24th, 2012

Today’s #HAchat: Let’s talk about “awareness”

by Amanda

A new year means a bunch of new opportunities to raise awareness for health conditions and communities. There are numerous health observances and “awareness months/weeks/days” or events that seek to do a bunch of different things (raise consciousness, funding, share research, and reduce stigma – among others.) But let’s really look at the idea of “awareness” today.

 

From Wikipedia: “Awareness is the state or ability to perceive, to feel, or to be conscious of events, objects or sensory patterns. In this level of consciousness, sense data can be confirmed by an observer without necessarily implying understanding.” Does this align with the way “awareness” is used in the media? In your community?

 

Where does awareness fit in with our Health Activism?

 

Join us for a discussion today where we discuss health observances, awareness campaigns, who awareness is for, and where it fits in with what we’re doing.

Can’t wait to hear what you have to say! See you on Twitter today at 3pm ET. http://tweetchat.com/room/HAchat#

 

Invite your followers to join us! Here’s a tweet to use now:

What does “awareness” mean and who is it for? Join me at 3pm ET for today’s Health Activist Tweetchat: http://bit.ly/zGpcDp #HAchat

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January 24th, 2012

Now Updated: Cancer & Your Bones Sharing Hub!

by Susan

As we continue to strive to empower Health Activists and create features that appeal to you, WEGO Health is excited to announce our updated Sharing Hub – “Cancer & Your Bones.”

 

We heard your request! Based directly on Health Activist feedback, we have revamped our Sharing Hub, “Cancer & Your Bones”, to include easy social sharing tools.

 

This sponsored Sharing Hub features videos from some of the country’s leading cancer physicians, Dr. Adam Brufsky and Dr. James McKiernan, and Alicia Staley and Joel Nowak, breast and prostate cancer Health Activists. This video presentation focuses on the importance of identifying and treating bone metastases, specifically around cancer.

To access the new Sharing Hub: “Cancer & Your Bones” visit: http://bit.ly/yJm5Iu


Know others in the cancer communities who might be interested? Please invite them to visit http://bit.ly/yJm5Iu

 

(As you requested, we’ve also included a few easy ways to share the video presentation directly from the new Sharing Hub!)

 

We hope you’ll take a few minutes to visit “Cancer & Your Bones” and share it with others!

 

 

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January 23rd, 2012

Join a new Health Activist Panel on Multiple Sclerosis

by Amanda

Our goal at WEGO Health is to empower Health Activists and we find that our virtual insight panels are one of the most powerful means we have to connect Health Activists with one another. For those of you who have taken part in a WEGO Health Insight Panel, you know firsthand the power that comes from connecting with other Health Activists around a particular condition and in sharing your own experiences as well as those of the larger online community.

Right now we’re looking to hold a sponsored Multiple Sclerosis Panel for both patients and caregivers who are active online – whether that means blogging, tweeting, facebooking, or just connecting one-on-one.

A few things to know:
• This panel will be virtual so participants can join from anywhere in the country but will need to be online and on the phone at the same time
• Each session will last one hour
• Participants will get the chance to have a candid conversation about the needs of their online community and to connect with others who share their interests.
• All participants will receive $25 for their participation

Do you have experience with Multiple Sclerosis or care for someone who does? Join us!
Click here to sign up: Multiple Sclerosis Insight Panel

Don’t have experience with Multiple Sclerosis? That’s okay – you can still help! Share our panel on facebook or twitter to make sure others know about the opportunity: http://bit.ly/wacEDqbp

 

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January 20th, 2012

Mistakes Patients Should Avoid When First Taking to the Web

by Amanda

 

When reading this article “Social Media Marketing Mistakes to Avoid” I decided I wanted to write a version for patients in the online health space. I’d love to see what seasoned (and new) Health Activists would add to my list! What mistakes have you seen and how would you correct them?

 

Mistakes Patients Should Avoid When First Taking to the Web:


  • Letting Google get the best of you. When facing a new diagnosis of yours or someone you love, it’s tempting to Google the Dickens out of it until you read absolutely everything you can possibly find. Yes, information is the very first step toward empowerment – but (and this is a significant but) – these searches and health info sites can easily overwhelm you. Before you know it you’re scaring yourself into thinking of the worst. You’re hearing about symptoms, outcomes, and other frightening things all at once. Instead of overwhelming yourself, pause, and consider asking someone you trust to look for you (or alongside you). And, instead of just looking for articles and hard facts – seek out patient communities. The narrative piece and community piece are going to give you solace and honesty along with the facts. Look for patient leaders and community members who can humanize the black and white and fill in where your care team may have left off.


  • Taking to the keyboard before setting up Do’s and Don’t's for yourself. Decide what you want to share online about your health before you do it. Set boundaries for yourself. Health and health conditions are undeniably emotional and create feelings within us that we have every right to express (it’s actually cathartic that we do). But try not to act too quickly out of passion when you’re behind a computer. Your words and confessions are going to be there for a while (maybe even forever) and you might not be able to censor your thoughts later. Ask yourself – what do I want to share? What do I want to keep to myself? What language am I comfortable using? How many details am I going to share? Keep in mind that these boundaries can change over time (and should) but outlining ahead of time is a good idea.


  • Not talking to their close family/friends about what they are comfortable with being sharing. Too often I’ve seen people online write about other people’s situations and wondered – “is the person they are talking about ok with their personal business being shared?” This is never more important than with health and health conditions. Speak to your loved ones about how you feel and what you are comfortable sharing and not sharing. Remember, especially if your health or treatment could impact them, to learn what they need as your loved ones and caregivers. Talk about what you both need before you jump on Facebook.


  • Post under your real name or identity right away. Like above, it’s important to set yourself up for longevity on the web. It’s better to say a little and add more over time than to try to subtract later. Consider joining in forums and communities by commenting under an avatar or anonymous username. Beware of logging in to sites using Social Sign-on as it sends information to Facebook that may be posted to your Friends faster than you can delete it.


  • Believing snakeoil, spammers, and scams. Especially when first diving into the web and health searches – you’re going to come across a lot of false information, myths portrayed as truths, and products being touted and sold. You’re in a vulnerable place and, as scam artists get craftier with their web-use, you may fall into their trap. Be ready to do your research before you sign up to try anything. And always ask your doctor before changing a treatment or medication routine. Wondering about whether a site is credible? Ask around! Health Activists know the community and are adept at spotting fakes.


  • Self-diagnosing. This is a tough one especially if you like researching and learning about yourself. Remember to take what you read online with a grain of salt and not to do anything drastic until you consult your physician. There are some great symptom lists and quizzes on the web – but they aren’t the be-all-end-all. Keep your wits about you and ask before you try (or buy).


  • Being a bystander, when you could jump in and share. It’s great to start out as a lurker, see what’s happening, and learning how the community functions. But don’t be so shy that you are afraid to jump in. Love a blog post? Tell the author. Learn something about another condition? Say so. Share what you learned. Try new things and see how social media and online community could work for you. Connect with Health Activists who you admire and look for support from fellow commenters and members.

 

That’s my list. What would you add?

 

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January 20th, 2012

Educate Your Community: Thyroid Awareness Month

by Amanda

Editor’s Note: I’m excited to share a post with you written by our Sponsor Programs Assistant Sharifa Simon-Roberts on Thyroid Awareness Month. To learn more about Thyroid Awareness and the online Thyroid community – check out our interviews with Katie Schwartz, founder of the wonderful Dear Thyroid, and Mary Shomon of About.com’s Thyroid community. Both are doing amazing things for their communities and, if you haven’t yet, you’ll learn a bit more about thyroid health! –Amanda


Educate Your Community: Thyroid Awareness Month

by Sharifa Simon-Roberts

Thyroid Plush

For many, January is the month where a number of bold declarations are made. Heading the list are promises to pay closer attention to one’s health – whether it’s in terms of diet, exercising or making physical check-ups a priority. With this in mind, I thought I would highlight a condition which affects millions of Americans – thyroid disease. What better time to take a look at a common ailment while paying tribute to that new year’s vow of making health a priority, than now and oh yes, of course during Thyroid Awareness month?

Like some of you, I had heard the term “thyroid” previously but if asked to define it and pinpoint its exact location during a biology exam, I would skip over that question quickly and hope no similar questions would haunt me as I completed the exam. I think now, perhaps I can avoid such a situation. The official name for the thyroid is ‘thyroid gland’ and it is an endocrine gland located in the lower part of the neck, in the vicinity of the Adam’s apple. It is butterfly-shaped, surrounds the trachea and some functions of this gland are to secrete hormones and monitor metabolism, heart rate, body temperature and the speed at which the body uses energy.

So what happens if this gland malfunctions or stops working? This is where my limited knowledge on the thyroid did reside. I remember in 2007 Oprah Winfrey attributed her 20 pound weight gain to problems with her thyroid. Her problems started off with hyperthyroidism where her thyroid gland was producing too many hormones, followed by, hypothyroidism, as her thyroid gland was not producing enough hormones. According to Winfrey, this was stress-induced. After devoting time to rest and some TLC (tender loving care, or in this case thyroid loving care) which we could all use, she was on the road to recovery and regaining her health.

Other disorders that I learned can result from thyroid dysfunction include: Goiters (an enlargement of the thyroid gland), thyroiditis (condition in which the thyroid becomes inflamed), and thyroid cancer.

In an attempt to avoid such ailments, researchers say we should ensure we consume foods with certain properties, for example: anti-oxidants, whole grains and iron. Fear not, these foods are not hard to find and benefits extend beyond that of thyroid health. By adding blueberries, tomatoes, spinach, tuna, chicken, turkey, broccoli, raisins, and dried peas and beans you are on your way to supporting a healthy thyroid. You do not have to alter your regimen radically. Rather seek to incorporate these foods into your diet.

In honor of the thyroid, the gland which does so much but receives, let’s just say, less than the praise it deserves, I hope you take to time to share with us specific experiences have you had with your thyroid. Are you active in the online thyroid community? What do you wish more people knew about thyroid and thyroid conditions? How can Health Activists in other conditions help raise awareness this month?

To learn how you can help raise thyroid awareness, click:  http://www.thyroidawarenessmonth.com/

Best wishes on your quest for improved wellbeing this year!

 

 

 

 

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January 19th, 2012

#HAchat Recap: Health Activist University

by Caitlin

Back to School!

Great job to all our participants in the “What if…?” Tweetchat this past Tuesday! By designing the curriculum for our fantasy Health Activist University together, we came up with a lot of ideas about resources that would be useful for the online Health Activist community as a whole.  This exercise also helped us set goals for who we should try to reach with our activism and to what end.  Here’s an outline of our new curriculum:

Course Offerings

The ideal Health Activist curriculum would cover topics for everyone from newbie activists to our most seasoned community members.  Everyone could benefit from some Social Media 101 – with topics ranging from tweeting, networking, and linguistics for industry/community jargon.  Then there’s the art of building your online community, starting with “Blogshop”  to go over the basics of building your blog and website management and ending with tips to build and interact with your online community.  Everyone should take a course focusing on balancing your advocacy and your personal health (@FindStability).

Once you’ve completed such required courses, it will be time to move on to more specific topics, such as Health Statistics, Empathy Online 101, alternative medicine and therapies,  and learning the in’s and out’s of pharma, regulatory, and insurance.  And finally, for taking your activism to the next level, courses on mobilizing activism into action! Courses that would answer the question “What are your options as Health Activists?” and “How can we be heard at the local/state/national level?”  As AliciaGetsFit put it:

AliciaGetsFit #hachat Also, who can we partner with (non-profits, orgs) locally & nationally that want to support our cause, get involved.

Rate my Professor

And after we’ve designed the curriculum, we discussed who exactly would be teaching these classes. What would help us put these concepts into action is a mentor, someone inspiring to show us the ropes.  Someone like this:

AliciaGetsFit @kimmiecollas :) I associate activist with being able to rally a crowd, move an audience, inspire change #hachat.

2manyfish2fry @wegohealth Someone who was kind and supportive, but also tough.

FindStability @wegohealth someone who is assertive, un-biased, community based, a person who listens and leads. #HAchat

Someone you can go to with your biggest questions. Who you can ask for blog post ideas, run ideas by, and who will help you determine how to best deliver your message.  Someone to keep you motivated when you’re sick, or when your community is sick, but who will also be there to remind you that your health comes first.  In the end, your mentor would help you to get your message out there, to find ways to communicate to new audiences in innovative ways.  They would help you craft your image, to correct misconceptions about Health activists, such as:

kimmieCollas@wegohealth T3.2 that we’re trying to be doctors . . . too many think that because we’re proactive we’re trying to practice medicine #HAchat

MeredithGould T3.2 That patient communities are made up of whiners, malcontents, & nutcases. Too blunt?!? #HAchat

 

These Health Activist mentors would help you define your reach. And get your message to the people who need to hear it most. When we discussed who needs to hear about Health Activism – here’s who you’d tell about your condition or your health activism if you could:

kimmieCollasT3.1 – the FDA. they need to know that WE should come first, not profits for pharma #HAchat

MeredithGouldT3.1 A recently dx’d patient who is looking for support, information, encouragement & hope. #HAchat

apdolanT3.1: President Obama. (Why not?!) #HAchat

Once you’ve got all that down, what comes next? As tweeted by flywithhope : Do we ever stop learning how to be effective Health Activists? @susanmees #HAchat

 

Finally, here are some very valuable lessons from our very own Health Activists, mentors in their own right!

Susanmees - Connect, connect, connect! Health Activists in other conditions know what’s up and can help you (regardless of diagnosis). #hachat

kimmieCollas: be open-minded, never stop learning – there’s always something new and helpful to be found, and you’ll never know it ALL #HAchat

KatharineS84: To not forget their end goal: to spread awareness, support, and advocate.

kimmieCollas: every body is different, no 1 thing will work for all patients, even if the illness is the same #HAchat also take care of themselves first. #HAchat

 

 

Thanks to all who participated and we look forward to chatting with you again next Tuesday at 3pm ET for another Health Activist Tweetchat!

 

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January 17th, 2012

Today’s #HAchat: “What if…” Health Activist Wishes

by Amanda

For today’s Health Activist Tweetchat let’s continue with our big picture thinking and play a little “What if” game. Health Activist Wishlist-creation. In true brainstorm fashion – there are no wrong answers!

 

Join us at 3pm ET for a fun brainstorm chat  about the following topics:

 

  • What if you could create a school for Health Activists? What classes would you offer? Who would teach?
  • If you had a Health Activist mentor – what would you ask them?
  • If you had unlimited time (or unlimited spoons) – what would you do?
  • If you could tell one person, company, org, or group about Health Activism and online patient community – who would it be & what would you say?

 

    Can’t wait to hear your responses!

    http://tweetchat.com/room/HAchat#

     

     

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