Tag: July 2012

#HAchat: Which came first? The Online or Offline Health Activist

Image credit: myguerrilla on Flickr

Continuing our discussion of IRL Health Activism, this week’s #HAchat focused on the intersection between the online and offline Health Activist community.   Logistically, offline advocacy was around long before online advocacy. After all, the internet is still relatively young, and online patient communities as we know them today are still developing.  While some Health Activists were able to take advantage of the anonymity of the online community from the get-go, others had no choice but to seek IRL support.

CIRants: Offline came first – there was no “online” back then! #HAchat

TomKindlon: Mainly offline. We ran the first #ME Awareness Week in Ireland back in 1996. Only tiny bits of online stuff for first few years. #HAchat

FeliciaFibro offline interaction,mostly because it was 11 years ago & there wasn’t a lot online for #fibromyalgiathen. #HAChat


We have discussed time and time again the benefits of the online community: immediate access 24/7, anonymity, endless contacts and resources…but we always discuss this subject as if online and offline activism (or life) are mutually exclusive concepts.  Believe it or not, that person whose blog you’re reading has a whole life on the other side of their computer.  How these worlds overlap and how Health Activists balance the commitments that have to online and offline relationships is a different story.


What do the people in your real life think about your Health Activism?


For the purpose of this discussion, let’s assume that your friends and family know about your blog, your community, the online forum where you participate.  Let’s also assume they have little to no idea what you do as a Health Activist, and that your online and offline lives are relatively separate. Many Health Activists in Tuesday’s chat commented that their friends and family didn’t really read their blog, or that they would keep their Health Activism separate from their personal social media accounts so that their followers don’t get bored.  This is understandable, while friends and family certainly want to know about your health and how you’re doing, they probably aren’t going to be super interested in recommendations for safe trick or treating when your kid has food allergies if that isn’t something that affects them.

FoodAllergyBuzz. My family knows about my #foodallergy blog & activism as well as a few friends. I don’t think any of them follow it, & that’s OK #HAchat

FeliciaFibro: yes, they know I have a website & separate social media focused on #fibro & that I interact with other spoonies.

KirstenWalters: Most people know I have an illness, blog about it, and do Arthritis Foundation walks… not that many are interested in helping! #HAchat

AfternoonNapper My father has also told me that he specifically chooses NOT to read my blog bc it hits too close to home for him. #HAchat

FeliciaFibro @AfternoonNapper that is how The Helpful Hubby was for the first 1-1.5 years, then he started reading it more often. #HAchat

TomKindlon: I set up 2 FB accounts to split off my #MECFS activism from my friends and family so they wouldn’t be bored. #HAchat


How does it make you feel to keep such a big part of your life so separate?  Keeping your personal and Health Activist accounts separately can definitely be useful in terms of organizing your online social media presence, but it’s ok to speak up and tell your other followers, friends and family about what you’re trying to do with your blog or your Facebook page.  Health Activism doesn’t get enough recognition as it is, so bringing a little bit of your online crusade IRL can spread awareness of the power that Health Activists have to incite change!


Having it all

Obviously your Health Activism isn’t the only thing you have going on in your life. You have family and friends vying for your time, doctor’s appointments, jobs, volunteer activities. You need to clean and eat and rest and exercise.  How do you do all of these things AND spend hours a day blogging, emailing, looking for content and research?  CIRants was interfering with my real life, then real life interfered with online life; still looking for the balance. #HAchat Like anything, it takes practice and knowing yourself well enough to know what you need in your life to stay happy and healthy.  Health Activists had some tips for maintaining balance:

FoodAllergyBuzz During the school year, online work/advocacy happens early in the morn b4 work, or in the evening #HAchat

serenebutterfly I tend to have a specific time in the day to write my blog, or tweet or spend time on Facebook and then make time for chores

Your online world and your offline world are not mutually exclusive.  Your real life interactions help to shape your presence online and vice versa.  And your online presence and the experiences that you have online will shape that way you address your condition IRL.  Overlap between them can take many forms, most basically in the sense that your online relationships have the ability to turn into IRL ones.  HealthcareNovel It’s been fascinating for me to see how online activities can lead to those ‘real’ interactions in daily life. #hachat


It’s about balance

Having it all is all about balance.  Everyone has to find what works for them.  Here are some tips from Health Activists about finding the right way to have fulfilling interactions both and on and offline:

FoodAllergyBuzz I would say, start small. Get a sense of how long you spend online and how much time you have to devote to being online.

serenebutterfly: Always schedule time for ‘you’. Relax and have a nice soak in the bath, or spend time with friends over coffee, watch a film

treatdiaries it takes time, go slow, be consistent and just focus on building trust. #HAchat


Remembers that it’s ok to get frustrated. Remember that other Health Activists are there to offer support and advice about how to find your balance:


AfternoonNapper It seems that just when I’m getting REALLY frustrated & overwhelmed, I hear “you don’t know how much this has helped me. That said—don’t forget to encourage other advocates. We all need to support one another’s support efforts.#hachat


Remember that there is value in each relationship that you have, whether it be on or offline:


It’s easy to get caught up in what you’re doing, especially when you’re starting to get to know new people or you have recently discovered a group that you really identify with. As such, when you’re delving into the online community, don’t forget the value of the relationships that you have IRL. HealthcareNovel Recognize that online will always be 24/7 so just find your space and do your best – people will be there when youre ready #hachat Just because you can talk to an online friend any time doesn’t mean you shouldn’t save time to make a meal with your friend from work.  Just because your online friends “get it” doesn’t mean that that IRL friends can’t offer words of support and advice, or even offer an escape from thinking about your condition.  Just because it’s easier to open up to your online friends doesn’t mean that you shouldn’t try to educate your IRL friends and family. After all, how can we spread awareness if we don’t reach out to those outside of our communities?


Be sure to join us next week as #HAchat participant, author, and bridger-of-gaps-between-physicians-and-patients Robert Green (@HealthcareNovel) hosts. We’ll be tweeting at 3pm ET on Tuesday, July 31st and hope to see you there!



Getting to Know HealthcareNovel: Robert Green

Next week we have a very special Health Activist Tweetchat hosted by writer Robert Green. We’ll be discussing the important topic of how healthcare professionals can work together with patients through the ever-passionate and knowledgeable: Health Activists. It’s going to be a great discussion and we’ve love to have you join us next Tuesday – July 31st at 3pm EST.


But first let’s learn a bit about Robert himself and his book about his experience working with clinicians and physicians, Community Healthcare.


What got you involved with the health community? What’s your Health Activist story?

The health community is one that involves all of us, each in our own way.  I have been inspired by many people over the years from physicians who work tirelessly everyday to help their patients to people who, more than just as patients, want to lead by example with their positive leadership and behaviors.  I have always been interested in my health beyond the clinic visit in terms of knowledge and healthy behaviors.  What has driven me throughout my career is bringing people together to achieve more than we ever could alone.  We all have our own stories that represent more than just our health or a particular condition, but the people we care about and what we want to achieve in our lives.  The health community just represents what I believe to be the most personal stories of all – and everyone has an important one to tell.


What’s your mission?

I want to stimulate a productive dialogue between all people employed by the clinic and the people they serve as patients regarding the intersection of patient engagement and staff engagement in the patient experience.  This is a time of tumultuous change in healthcare and an important time to define and execute on the patient experience beyond the tradition of transactional clinic visit to one of a continuum of care at the community level.


What inspired you to write your book “Community Healthcare: Finding a Common Ground with New Expectations in Healthcare“?

Through my own experiences as a patient, with others in my family as patients, and my business relationships with physicians I have seen both great examples of leadership in the process of care and missed opportunities.  Physicians I have known for years are not just doing a job as a physician, but living their life as one.  The increasing demands for information and accessibility within the clinic cannot fall solely on the shoulders of physicians.  While tools such as health information technology (HIT), social media and electronic medical records (EMR) represent meaningful platforms to improve gathering, organizing, reporting, and sharing of information, they are still driven by the trust between a patient and physician and the other staff who support this interaction everyday in the clinic.  There are real opportunities to make incremental improvements in the clinic by and for people without being overwhelmed by the myriad of new requirements within the healthcare industry.



Tell us a bit about the book.

The book is a story that represents a journey among the staff in a clinic who are trying to balance the needs of patients, the forces of competition, the expectations for collaboration, and the strategic use of HIT.  The people in the story are fictional characters, but the story represents a compilation of my experiences working with people in clinics.  There are many people who as patients or caregivers are advocates for health and are setting the expectations for clinics in terms of accessibility of information, guidance, support and coordination of care.  While these may represent a confrontational conversation for some, they really represent an opportunity to help people in the way that they need help and build the clinic reputation within the community.  Often times, people in the clinic perceive these expectations as a revolutionary experience and hence struggle to find a starting point.  Just as there are people who are advocates for their own health and want to actively participate in their own care, there are non-clinical staff members in the clinic who have ‘pockets of knowledge’ from their own experiences everyday.  What these people have in common is that each in their own way represent advocates in the culture of care who are trying to connect with the physician.  However, the clinic too often epitomizes a fragmented process that separates the clinical and clerical staff in the patient experience.  Further, the perceived pressure to add HIT tools to this process creates even greater separation among these same staff in the clinic to meet each others expectations and those of patients in a consistent way.  I offer strategic recommendations throughout the story to make a difference in the community with patients by tying together the industry challenges at the national level with the competitive challenges at the local level for all concerned in the clinic.


What’s next for you as an advocate?

As an advocate, I will continue to encourage an alternative and complementary definition of HIT within the clinic – Human Interaction Throughout between people on either side of the clinic reception desk.


Any upcoming projects you’re working on that you’re excited about?

I’m already working on some projects to help clinics define the process of engaging patients with a comprehensive approach – and looking forward to many more.


Thanks so much for sharing with us. It’s going to be a really exciting chat! Be sure to follow Robert on Twitter @HealthcareNovel

Health Activist Authors: Trisha Torrey

As part of our monthly celebration of Health Activism In Real Life (IRL) and offline advocacy – we will be looking at a way members of our online health network have made a splash writing offline: authorship. Today’s interview is with Patient Empowerment Health Activist – Trisha Torrey who advocates at her site Every Patient’s Advocate and has written several books including, You Bet Your Life: The 10 Mistakes Every Patient Makes.




When and why did you start writing?

I began writing my first book, You Bet Your Life! The 10 Mistakes Every Patient Makes (How to Fix Them to Get the Healthcare You Deserve) shortly after my misdiagnosis experience in 2004.  But the more and more I researched what I knew I wanted to write about, the deeper the information took me, and the more appalled I became at what the American healthcare system had evolved to.  It started me on a very long learning curve until 2008 when I re-outlined my book, then began writing it from an entirely different viewpoint.  It was eventually published in early 2010.



What inspired you to write your book? Tell us a bit about your book.

In 2004 I was diagnosed with a rare, incurable, terminal form of lymphoma and given a prognosis of just a few months to live.  Despite the fact that the diagnosis had been based on a small tumor removed from my torso, and despite the fact that two pathology labs had diagnosed me with that lymphoma – I had my doubts.  I then took on the medical establishment, led by my oncologist who insisted I start chemo, and eventually proved I had no lymphoma.  Eight years later, I have never had any form of treatment and no recurrence of tumors or other symptoms.


After the final non-diagnosis verdict, I realized two things.  First, that if I had undergone chemo, and survived it, then the very doctors who were wrong would have been declared heroes for curing me of an incurable cancer.  And second, that if this had happened to me, then it could happen to anyone.  I began reading everything I could get my hands on about misdiagnosis, then medical errors, and then the many ways the healthcare system is set up to harm patients instead of help them.


My conclusion:  That American Healthcare is not about health or care.  It’s about sickness and money – making money from sick and injured Americans.  Further, that because we don’t engage in our own care, including learning about our diagnoses, or researching treatment options, even, simply, asking questions or double checking the information we are provided – we are letting the system get away with treating us so poorly!  We default to trust and belief, and do so at our own peril.


So that’s what led me to writing the book that was eventually published, You Bet Your Life! The 10 Mistakes Every Patient Makes (How to Fix Them to Get the Healthcare You Deserve). It’s written for patients to help them understand why they aren’t getting what they need, and how they can turn that around.  It provides the points of view of providers and payers, and helps patients use those to their benefit instead of being buffeted to their detriment.



Any tips for fellow Health Activists who may want to write a book?

Just do it!  And stick with it.  Writing a book is a monumental task.  I spent many evenings and weekends writing because it was easier to turn off email then, and the phone doesn’t ring as much.  For a period of several months I gave up everything that wasn’t necessary (including a summer’s worth of golf!)  I also had buy-in from my family – everything from cooking and cleaning to moral support.


Plan, plan, plan – and be sure you have your facts straight.  I spent years adding to my body of research, and hours and hours outlining and organizing.  Good, thorough planning and resourcing helps the words go together when it comes time to do the writing.


Finally – make sure the cover represents the content of your book.  It drives me nuts to see the author’s photo on the cover – that’s a cop-out unless the book is about that author.  My publisher sent me covers with stethoscopes and syringes….  But I wanted “vulnerable patient.”  Eventually – that’s what I got.  And it was worth the struggle.


Thanks for sharing with us, Trisha. You can learn more about her book You Bet Your Life by visiting her site Trisha Torrey and following her on Twitter @trishatorrey.


#HAchat Recap: On Offline Awareness Events

For Health Activists it doesn’t get more IRL than awareness events.  We know that many members of the WEGO Health community must have attended at least one awareness event in their life, whether it be a talk at a local organization or book store, a walk, a conference, or a fundraiser.  But what goes into these events? How big or small do they have to be to really “raise awareness”?  Check out what Health Activists had to say about hosting awareness events during this week’s Health Activist Tweetchat.


IRL Awarness Walk

NataliaForsyth An awareness event can be getting together in at a coffee shop or a full blown conference. Its abt the conversation not the venue. #HAchat


When you’re first thinking about how you want to raise awareness, don’t get sucked into the “awareness events = awareness walks” mentality. It’s possible to raise awareness in many different venues, formats, and with many different people involved.

FeliciaFibro: though, typically I think of walks, runs, benefits, auctions, etc… Educational events count too. #HAchat

FeliciaFibro I don’t an event has to be labeled as an awareness even for it to be great at raising awareness.#HAchat #fibro #spoonie

NataliaForsyth: I think awareness is sharing education & resources, connecting & rallying people to communicate for change. #hachat

womenofteal *events* don’t have to raise funds. As simple as a banner / ribbon or a presentation to a group or written article #HAchat


No matter the venue or format, awareness events should spread knowledge and understanding around a certain condition or cause, and should include patients, caregivers and healthcare professionals so that all voices are heard.

serenebutterfly: Qualities around an awareness events need to consist of people living with the condition, giving a real account… #HAchat

MHoskins2179: Most meaningful to me=actually having ppl living w/condition, not just docs/experts/those giving “textbook answers” #nooffense


Consider the goal of your event carefully!

Before you start rolling out the banners and ribbons, carefully consider the goal of your awareness event. The format of your event will depend largely on the goals that you hope to achieve.  Are you hoping to raise funds? Get better healthcare services for people living with your condition? Inform the general public about your condition?  Who do you want to attend the event? What do you want the outcome of the conversations to be?  The answers to these questions will define what your event will look like.  For walks, auctions, benefits, etc., the goal seems to be to raise money to fund a cause or research.  Other types of events seem to focus more on getting people together to discuss their experiences and activities and provide support.

kimmieCollas : the goal depends on the event. For some, it’s raising money for research, for others it’s raising awareness;

serenebutterfly: To raise the knowledge surrounding the condition, making aware the symptoms, prevalence, treatment and so on #HAchat

SinnerEllaDeVil: the goal should always be EDUCATION! Detection, testing, treatment, coping, support!#HAchat


Define what will make your event successful!

Once you know what you’re hoping to achieve at your awareness event, define what will make the event successful.  If you’re raising money, how much money do you hope to raise? If you’re hosting an educational event, how many people do you hope will attend? If you want to connect patients with Healthcare Providers (HCPs), what should the ratio of HCPs to patients be?  Setting clear goals will help you to plan your efforts and activities to ensure that your event is successful.  No matter what your goals are, be sure to define them before you make any big decisions about what your event will look like.  They will guide you through the planning process to ensure you, your organization, and your attendees get the most out of the event.

serenebutterfly: A successful awareness event should be fun, a lot of pamphlets handed out and getting the word out to as many people as poss #HAchat

TomKindlon: Reaching a lot of people (ideally with good information) might be one way to describe a successful awareness event #HAchat

womenofteal Success: Hearing someone say ” I never new that” or “I’m going to call my doctor when I get home” #HAchat

FeliciaFibro a successful event for attendees does not always mean the same for the hosting organization/group. #HAchat


Be prepared for potential challenges!

After you define your goals, be sure to define anticipated challenges so that you can address them from the get go. For instance, perhaps you have a great community of patients, but don’t have great relationships with healthcare providers.  In this case, you should start reaching out to potential attendees well in advance.  If your budget is tight, be sure to factor in unanticipated costs. If the event is soon, be sure to set realistic planning milestones to keep you on track. And of course, be sure that you have enough help! Get people to commit to helping out at the event (with clearly assigned roles and responsibilities) well in advance, and make sure you have extra hands the day before and the day of the event. There are always last minute tasks to be done, and you don’t want to be panicking right before your attendees start to arrive.  Before participants do start to arrive, you will also want to have clear guidelines as to what to do during a crisis: MHoskins2179 Just because you’re trying to raise awareness, which is good, that doesn’t mean all will agree w/approach. Just the way it is. #HAchat. Someone is bound to disagree with something going on at your event, and knowing how you’re going to deal with issues from participants or attendees before they come to you with a problem will save everyone a headache.

TomKindlon: Challenges: Getting good attendance; Getting people to commit to help on day; Having useful material to share within a budget #HAchat

FeliciaFibro @wegohealth t3 convincing local media outlets to share your info – when many events won’t get shared. #HAchat

SinnerEllaDeVil: try not to get too much going at once. Overwhelming yourself guarantees losing steam and possible failure. #HAchat

FeliciaFibro having a clear leader in charge of the planning committee, using social media to stay in touch with community. #HAchat


Follow up!

As much as you try to plan for success, you should also keep several things in mind when it comes to ensuring that your event doesn’t fall into the “unsuccessful” category.  Be sure that you stay true to your goals during the event. Yes, awareness events can serve as a great source of exposure for numerous organizations and those sponsoring the event, but don’t let an outside agenda run the show.    MHoskins2179: Too much self-promotion, so you lose sight of message/issue of the awareness-raising. That= unsuccessful.

Next, have clear next steps or action items. The last thing you want is for folks to walk out of your event with lots of pamphlets that they are never going to read.  You want them to walk out of your event refreshed and excited about what they just learned and about future opportunities to engage. What are these opportunities and next steps, you ask? You have to define them!

FitnessFleet: It can be [unsuccessful] if the participants dont have a follow up plan. What happens after the excitement of the event? #HAchat

HealthcareNovel: When the org/committee see the event as the end vs. means & fails 2 offer channel 4 more engaging w/people #HAchat

caissg : confusing facts, not enough information, next steps are ill-defined #hachat

HealthcareNovel Based on what happens w/people after event – have to sustain this effort to engage w/sincere behaviors #hachat

While these are certainly not the only steps that go into planning an awareness event, taking the time to think about these items will definitely help to ensure success!


Have you hosted an awareness event or do you have one coming up? Let us know about it! We’d be happy to let others in the WEGO Health community know about your event.  Additionally, you can email us with any other tips, tricks or suggestions at  Tune in next Tuesday at 3 PM for more discussion of Health Activism IRL!


This week's HAchat: Awareness Events

Image credit: SewPixie on Flickr

To keep going with our July Health Activism IRL theme – let’s delve into the ever-important aspect of in-person awareness events. These are the walks, talks, fundraisers, and other gatherings that help rally together a team of people for the same cause. Have you attended an event for your health condition or focus? How did it go? If you could create a perfect awareness event – what would it consist of?


Join this week’s Health Activist Tweetchat to discuss:

– What defines an “awareness event?” What types of awareness events exist?

– Which events are the most successful and why? Which are the least successful?

– What should the goals of all awareness events be?

– What are the challenges of hosting/attending awareness events? How can one overcome such challenges?

– How can we help awareness events become more creative and influential as Health Activists?

– What can online community bring to awareness events? (And vice versa)?


It’s going to be an interesting discussion! Whether you’ve started your own event, participated in someone else’s, given donations, or simply heard about other events – there is a lot of ground to cover. In true health leader fashion we’ll be looking critically at what it means to raise awareness and why in-person events are important – if they are. Wear your analytical hat and bring your knowledge of what other health communities (or even non-health-related non-profits, orgs, charities, and more) are doing to get their name out there and their cause supported.


Join us Tuesday, July 10th, at 3pm EDT. We’ll be tweeting using the #HAchat and you can join us here:



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