Please Come to Grantsville, MD #cinderblocks2

JjrkCh Please come & RT: June 4-6 in Grantsville MD http://t.co/2uYkCGgKua #Cinderblocks2 #ptsafety #essure #meshdevicenews Woodstockburningmanish 5/16/15, 1:03 PM

Apply for a $500 Patient Travel Scholarship to June 4-6 Partnership WITH Patients in Grantsville, MD

More Patient Travel Scholarships!

What does the “Cinderblocks2: The Partnership with PatientsContinues” conference (in Grantsville, MD pop. 825) and Doctors 2.0 & You conference (in Paris, France pop. 2 million) have in common?

Both events are focused on innovation and better communication within healthcare. 

Doctors 2.0 has the over arching goal of identifying the ways in which the inclusion of health 2.0 tools and social media platforms can improve care.

Cinderblocks2 is a mash up of art, activism, medicine, social media, HIT, patient rights and fire-dancing.  It is sort of like if Burning Man met healthcare.

Both events were founded and are organized by two powerful women:

Denise Silber is the founder of the Doctors 2.0 & You conference series. She is a healthcare social media influencer, keynote speaker, and valued strategic advisor. 

Denise was awarded the French Legion of Honor in 2011 for her work in promotingeHealth trans-Atlantically. A Smith College graduate in Government, Denise wasa US Foreign Service Officer before getting her MBA from Harvard BusinessSchool. She then spent 9 years in the pharma industry before creating her own medical communications companies and helping to found digital health start-ups. 

As for Cinderblocks, I am Regina Holliday.  Sometimes called the Rosa Parks of Healthcare.  I graduated Sapulpa high school in Oklahoma. (GO Chieftains!) I worked retail for 16 years before my loving husband Fred died of cancer in 2009; then I became a patient rights activist and artist. I am a keynote speaker, a health information technology change agent and am currently creating The Walking Gallery Center for Arts and Healing in Grantsville, MD.   

Both events are on the same days!!!

Doctors 2.0 is on June 4-5, 2015.  Cinderblocks2 is on June 4-6,2015.  Now some conference planners would be shooting eye daggers at each other over that, not Denise and I.  We are all about spreading the love.

The most important thing both events have in common is that they will benefit from Patient Travel Scholarships issued by the Society for Participatory Medicine!

In 2012, The Society for Participatory Medicine created a patient travel fund so they could award ten $500.00 patient travel scholarships. These were issued to patients so they could afford to attend Cinderblocks1 in Kansas City.  We crowdfunded the money and we asked for direct donation to the site.  We were successful thanks to many kind donors.

When Denise pointed out that our events were on the same days she said it would be great if we could connect them in some way, so we decided we are going do some live streamed interviews between the two conferences. But why stop there?  I said that the Society for Participatory Medicine (#S4PM ) was going to provide patient travel scholarships once again for Cinderblocks, would she like to include Doctors 2.0 in the competition?  She said yes!  #S4PM said yes, they could issue awards for either event!!!

SO…. One day after I announce that HIStalk is epically cool and issuing travel scholarships for HIMSS,

I am announcing that the Society for Participatory Medicine will issue $500.00 Patient Travel Scholarships to attendees of Doctors 2.0 or #Cinderblocks2.

How do you enter?

You must post a blog entry by March 31, 2015 NOW EXTENDED to April 20, 2015 explaining why you want to go to either Doctors 2.0 or Cinderblocks2 and why a patient travel scholarship is needed. 

You must send a link to the post to me by either twitter or facebook prior to  March 31, 2015 NOW EXTENDED to April 20, 2015 If you do not have a blog, please send me your post as an attachment and I will find a blog you can post on as a guest blogger.  

You must also encourage people to donate to the travel fund. These scholarships will come from donations to the fund. I will do my best to encourage companies to sponsor folks but I have found when it comes to patients many small donations add up. (Below is just a screen shot you must go here to donate.) 

How will you be judged?

We will judge entries based on writing ability and need.  We will announce the winners on March 31, 2015 April 24, 2015. Payments will be issued after the conference events.

Responsibilities of the winners: 

You will need to attend the conference of your choice.  We encourage you to use social media during the conference.  We will need you to post a report of your experience on a blog.  After these responsibilities are fulfilled, the Society for Participatory Medicine will issue the $500.00 scholarships.

It is sure a great time to be a patient activist! Spread the word and good luck!

________________________________________________________________________________

Joleen Chambers:  application for #S4PM scholarship

I want to attend because I will meet with other effective patients/advocates and healthcare leaders who are at the forefront of progress in providing the right healthcare at the right time for those who need it most.  Patients who have been harmed are provided a unique forum to speak of their experience and share what policies and procedures need to be legislated and/or adopted to PREVENT harm of others.  In sharing there is healing and validation.  It is essential to take responsibility for our own health and work together toward public health of our community and nation.  Healthcare spending is now 1/5 of our economy and 400,000 preventable deaths occur because of hospital medical errors annually.  Cinderblocks convenes a diverse group of activists that exponentially shares new information and ideas and will have the greatest impact on how healthcare is delivered in the future.  I want to contribute and participate!  

I support the costs of my patient advocacy (beginning in 2009) with my own personal funds.  Travel to MD from TX and hotel and food will exceed the $500 scholarship.  

Regina Holliday keynotes in Australia!

A 'patient harm' advocate keynotes in Australia!

Regina Holliday is a young mother of two sons who is tirelessly working to make sure that all patients have access to their medical record.  Her husband's death was fraught with medical missteps and gaffs that were hurtful and altogether preventable.  It is her mission that these health system errors are corrected.

She is now in Sydney, Australia to keynote the Health Informatics Conference.

While she is working for us, let us overwhelm her with donations to her favorite causes!


Provide travel/conference cost support for patients and their advocates.
Please purchase her new book  The Walking Wall: 73 Cents to The Walking Gallery
Partnership With Patients in Kansas City, MO September 21-23, 2012

Regina Holliday/Mayo Scholarship & Medical Device Safety

Regina Holliday's Medical Advocacy Blog: Spare Parts: When I was a young teen I went with my little sister Esther to get my ears pierced at Claire’s Boutique in the local Mall.  If you are n...

Tutorial: Mayo Scholarship voting

Please vote daily until August 4, 2012. Heres how:

Your three action items are in RED.  You must go to the Mayo website (live link provided!) to vote-this is just a tutorial on this page.

Joleen C. – Scholarship Contest Essay

Posted on July 16, 2012 by Randy Schwarz

Editor’s Note:  Joleen C. is a patient/caregiver who submitted the following essay as part of the Mayo Clinic Center for Social Media Patient, Caregiver Scholarship Contest. To vote, simply use the Facebook “Like” or Twitter “Tweet” buttons at the bottom of each post to share or leave a positive comment. The top vote-getters will be finalists.

Login, “Like” Twitter & Post:  When the Medical Device Safety Act is passed by Congress and the Charter of the FDA is amended to include voting Patient Representatives on the medical device panel (as in pharmaceuticals), social media will be able to claim a large part of the victory.

Four years ago I began handling phone, mail and other correspondence for a family member who experienced early failure of a joint replacement implant.  Internet research revealed the medical and legal purgatory of thousands of joint replacement implant patients.  Navigating the medical system (for a disabled person prescribed maximum dose painkiller and living 1,000 miles apart) is challenging but not uncommon situation for many caregivers, I learned.  Because the root of the problem was intractable (poor federal public policy) my role transitioned to unpaid full-time advocate. I applied and was selected in September 2010 to attend the FDA Patient Representative workshop, which expanded my advocacy to all patients with failed implanted medical devices.

My stated goal is to help patients with failed devices access the medical care that they require and to work toward the conclusions of the Institute of Medicine’s 7/29/2011 report. It advised the FDA to restrict the use of FDA 510(k) approvals for implanted devices and provide a post-market UDI national registry that would be accessible to patients and their medical providers.

This quest prompted me to join with a number of effective advocacy organizations such as The Society for Preventative Medicine, Consumers Union and SpeakerLink.  I created a blog (http://fida-advocate.blogspot.com) and regularly participate on FaceBook, Twitter (@JjrkCh) and LinkedIn.  I have testified twice at FDA/CDRH Town Hall meetings and have traveled from my home in Dallas, TX to Minnesota, Washington, DC -4 times-, San Francisco, CA, Irving & San Antonio & Austin, TX in my role as advocate.  Recently, financial limitations prevented me from attending Regina Holliday’s The Walking Gallery and the HDI Forum in Washington, D.C. (both with registration complete) so I participated virtually on a webinar.

In my work toward the goal of safer and more effective implant devices I would value and benefit from discussions with trained social media professionals and other advocates.  I wish to elevate my advocacy skills and clarity of purpose so that I capably  represent the patients who have been harmed and are often unable to travel or spare time/money for this endeavor.  Exposure to new ideas/attitudes would refresh and enhance my implementation of more targeted social media communications.  My advocacy includes educating the public, the device industry, administrators and legislators about federal public policy and legislative changes that would strengthen patient safety and reduce patient harm.

I appreciate that Mayo Social Media has many qualified applicants for these three scholarships.  Thank you for your consideration and this valued opportunity to communicate via social media!  – Joleen Chambers

Select TWEET button.   Select 'LIKE' button.

Read to the bottom of all comments and leave your COMMENT and press POST COMMENT.

(I am now ranked at #5 and I must be #3 to be selected.  It is very possible with your help and the help of your followers!   Thank you so much!)

Please vote daily until August 4, 2012.   

http://socialmedia.mayoclinic.org/2012/07/16/joleen-c-scholarship-contest-essay/

Help me win a Mayo scholarship!

Go to http://bit.ly/PakhxV  To vote: Like, Tweet and a positive comment-daily!    Thx!

Mayo Social Media Summit

LINK

Voting for the scholarship is July 16-August 3, 2012.  http://socialmedia.mayoclinic.org/2012/07/16/joleen-c-scholarship-contest-essay/  I will win if you- DAILY - push the 'Like' button for FaceBook, Twitter, and leave a positive comment. Thank you!

My essay:

Login, “Like” Twitter & Post:  When the Medical Device Safety Act is passed by Congress and the Charter of the FDA is amended to include voting Patient Representatives on the medical device panel (as in pharmaceuticals), social media will be able to claim a large part of the victory.

Four years ago I began handling phone, mail and other correspondence for a family member who experienced early failure of a joint replacement implant.  Internet research revealed the medical and legal purgatory of thousands of joint replacement implant patients.  Navigating the medical system (for a disabled person prescribed maximum dose painkiller and living 1,000 miles apart) is challenging but not uncommon situation for many caregivers, I learned.  Because the root of the problem was intractable (poor federal public policy) my role transitioned to unpaid full-time advocate. I applied and was selected in September 2010 to attend the FDA Patient Representative workshop, which expanded my advocacy to all patients with failed implanted medical devices.   

My stated goal is to help patients with failed devices access the medical care that they require and to work toward the conclusions of the Institute of Medicine’s 7/29/2011 report. It advised the FDA to restrict the use of FDA 510(k) approvals for implanted devices and provide a post-market UDI national registry that would be accessible to patients and their medical providers.

This quest prompted me to join with a number of effective advocacy organizations such as The Society for Preventative Medicine, Consumers Union and SpeakerLink.  I created a blog (http://fida-advocate.blogspot.com) and regularly participate on FaceBook, Twitter (@JjrkCh) and LinkedIn.  I have testified twice at FDA/CDRH Town Hall meetings and have traveled from my home in Dallas, TX to Minnesota, Washington, DC -4 times-, San Francisco, CA, Irving & San Antonio & Austin, TX in my role as advocate.  Recently, financial limitations prevented me from attending Regina Holliday’s The Walking Gallery and the HDI Forum in Washington, D.C. (both with registration complete) so I participated virtually on a webinar. 

In my work toward the goal of safer and more effective implant devices I would value and benefit from discussions with trained social media professionals and other advocates.  I wish to elevate my advocacy skills and clarity of purpose so that I capably represent the patients who have been harmed and are often unable to travel or spare time/money for this endeavor.  Exposure to new ideas/attitudes would refresh and enhance my implementation of more targeted social media communications.  My advocacy includes educating the public, the device industry, administrators and legislators about federal public policy and legislative changes that would strengthen patient safety and reduce patient harm. 

I appreciate that Mayo Social Media has many qualified applicants for these three scholarships.  Thank you for your consideration and this valued opportunity to communicate via social media! 

Partnership WITH Patients Summit

LINK

http://partnershipwithpatients.com/

http://partnershipwithpatients.com/blog/

Partnership With Patients Summit

Friday, Sept 21, 2012 at 6 PM - Sunday, Sept 23, 2012 at 4 PM

Kansas City, MO

Event Details

This conference is two-fold in its mission. We will be working on strategies for a grass roots support the Partnership for Patients campaign. We will also help enable patients by providing a place to network, learn and grow as patient advocates that focus on health policy. You can read more about this on our website 

Partnership With Patients

The funding model for this event is the STONE SOUP method.  Please give what you can and take from this event the energy you need. 

We have no federal funding and no grants.  Cerner has graciously agreed to provide the space for our event in their educational building.  The Society for Participatory medicine is our non-profit partner.  They have agreed to create a Patient Travel Scholarship Fund.  They will accept donations for this purpose and will issue grants.  The hope being that this fund will grow beyond this one event and help patients attend other conferences in the future. 

We are looking for sponsors to help defray overall costs as well as providing scholarships to patients for travel and lodging.  This summit will be a moment of true cooperation with venders, organizations, providers and patients all coming together to advocate for positive change.  If you purchase a ticket here it covers attendance at this conference on Friday night, Saturday and Sunday.  You will need to make travel and lodging arrangement in addition.  A block of rooms have been reserved at 

The Marriott Downtown Kansas City

200 West 12th Street. Kansas City, Missouri 64105 

Please call 1 (816) 421-6800 to book your room at the conference rate.

Agenda:

 Attendees must attend at least one session in all three tracks

September 21, Friday night would be a meet and greet with a few speeches. Gathering of #TheWalkingGallery  Light refreshments.

September 22, Saturday begins with breakfast in exhibition space, Opening Keynote, Panel Presentation from the Society for Participatory Medicine, 4x4 presentations from our sponsors,  break outs in multiple tracks with different levels of information :ie 101 level, 102 level…

Attendees must attend at least one session in all three tracks

Track 1: HIT/Health Policy

Meaningful Use/ Cerner Experience Theatre/ ACO/HIE/ Blue Button/ Patient Portals 

Track 2: Patient Quality/Safety

Paticipatory Medicine, e-Patients, End of Life Care, Palliative Care, Healthcare-Associated Infection, Types of Medical Harm, Adverse Events, Safety Concerns About the Electronic Medical Record, History of Patient Advocacy, Partnership for Patients, Quantified Self, Gamification

Track 3: Media and the Message

Social Media/Activism through the Arts/ Public Speaking/

Evening: Ignite format speeches 

September 23, Sunday: Two tracks

Healthcamp unconference

Honing your message: for the patient speaker who needs more experience and for mentors who wish to help them!

Funding/Tickets:

Sponsorship levels:

Diamond Cinder Block 5,000 level

Regina Holliday will create a 24x36 canvas during 2012/2013 Partnership for Patients campaign year for this sponsor

Recognized from the stage during opening keynote
4x4 Presentation

Limited edition print of conference painting

Admission for 1

Table in exhibition hall

Logo on our website

Logo on thank you signage

Golden Cinder Block: $3,000 level

Regina Holliday will create a 18x24 canvas during the 2012/2013 Partnership for Patients campaign year for this sponsor

Recognized from the stage during opening keynote

4x4 Presentation

Limited edition print of conference painting

Admission for 1

Table in exhibition hall

Logo on our website

Logo on thank you signage

Cinder Block Level: $1,000

Recognized from the stage during opening keynote

Limited edition print of conference painting

Admission for 1

Table in exhibition hall

Logo on our website

Logo on thank you signage

4x4 Level $500

Admission for 1

Table in exhibition hall

Logo on our website

Logo on our thank you signage

2x4 Level: $250

Admission for 1

Logo on our website

Logo on our thank- you signage

Partner Level:  $100.00

Attendee who does not self-define as patient

Patient Level: $50.00

Attendee who does self-define as patient

Patient-Generated Data - Your Input is Requested!

LINK

Federal Advisory Committees Seeking Input on Incorporation of Patient-Generated Data for Stage 3 Meaningful Use

Monday, June 18th, 2012 | Posted by: Joshua Seidman, PhD, Director, Meaningful Use, ONC | Category: FACA, HIT Policy Committee, HIT Standards Committee

ONC’s federal advisory committees (FACAs) held a full-day hearing on June 8 (written testimony can be found here) to explore how patient-generated health data (PGHD) might be incorporated into Meaningful Use (MU) of EHRs for Stage 3 of the EHR Incentive Programs. Some examples of PGHD are data from a patient’s personal health record, data from a blood glucose monitor, or information about a patient’s functional status. Three FACA workgroups hosted the hearing: The Health IT Policy Committee’s MU and Quality Measurement Workgroups, and the Health IT Standards Committee’s Consumer Engagement Power Team.

The hearing built off of not only the committee’s previous MU recommendations, but also its 2010 hearing on patient and family engagement. The blog generated several dozen thoughtful comments after the 2010 hearing, and we hope that will be the case with this blog post! ONC and the FACAs look forward to additional input via this blog, which will help inform the workgroups’ and committees’ future deliberations on recommendations for Stage 3. We encourage you to voice your perspectives in the comments section below.

In particular, the hearing and discussion among committee members generated many areas and concepts of great interest upon which we would appreciate comment. We’d greatly appreciate input on the following questions:

•               How can we ensure that patients’ reports of symptoms and their knowledge of their own contraindications make their way into EHRs?

•               Although there clearly is a need to have a structure for PGHD, does all PGHD for care management need to be in a structured form?

•               In order to manage the legal, policy, and operational issues associated with provider collection of PGHD, what should individual providers do to ensure they have a plan for managing that data?

•               Patients – particularly those living with chronic conditions – have an ongoing stream of information, for which clinical encounters with the delivery system are infrequent data points. What is the relationship between that data stream and the EHR?

•               Although PGHD has some specific needs, identification and sourcing of all data sources are important; how can addressing PGHD management issues help clarify how data sources are tagged more generally in the EHR?

•               For which health issues is it clear that patients and families are the authoritative source?

•               How should we balance the need to build in the capability for providers to incorporate structured PGHD into the EHR without being overly prescriptive?

•               Similarly, how should we balance the concern about being overly prescriptive with ensuring a certain degree of interoperability, usability and understandability of PGHD?

•               What important implications does PGHD have for the robustness of clinical decision support, quality measurement, and care coordination?

•               How can collection of PGHD address health disparities and what cautions exist to ensure that disparities are not widened?

We look forward to hearing from you.

Joleen Chambers says:

Your comment is awaiting moderation.

June 19, 2012 at 1:24 pm

The EHR/MHR belongs to the patient/citizen/human being. The patient/citizen/human being should have the ability to go into the record and make changes/corrections. The real life example is my brother’s clinical record stated that he smoked 20 packs of cigarettes daily when, in fact, he smoked one. The correction (Mayo Clinic) took nearly 3 months and could have cost him his health insurance and clearance for further revision surgery on his failed medical device implant (FDA MedWatch Adverse Event #5009052). The providers are merely “riders” on the EHR/MHR and all information that is entered into the record is no longer “proprietary”.

Moving testimony at ONÇ HIT meeting June 8, 2012

Incorporating Patient-generated Information to Manage Health

HIT Policy Committee Hearing

June 8, 2012

Testimony of Nikolai Kirienko

Project Director, Crohnology.MD

University of California, Berkeley

www.crohnology.md

Thank you for the opportunity to testify before this committee. At the White House Summit on Health Care Reform, it was stated that 5% percent of patients contribute 55% to the total cost of care. In solidarity with this group, as both a young adult with a chronic care condition, and as a disabled student at UC Berkeley, I hope my testimony will speak to the urgent need to give these patients representation in their medical record that they do not have today.

We, the people providers call patients, most often navigate care by voice.  We tell our stories, in clinic, and at the bedside, in search of a cure for what ails us. Yet, we are not always heard-- especially when our illness cannot be easily seen by others-- or ourselves.

From ages twelve to eighteen, I hardly looked sick, despite years of disabling symptoms, and semesters of missed school.  I was airlifted from a ski resort with a full bowel obstruction, but on the day my intestines had finally scarred shut from the progressive inflammation of Crohn's disease, not even my family would have guessed.

Through the six months that followed at Children's Hospital Oakland, I was unable to eat, and received nutrition through a surgically placed central line.  A teenaged friend in the hospital, Anastasia, also battling colitis, had one as well.  We both developed a severe complication at the same time; a blood clot at the end of our central line.  My arm swelled up like a water balloon; my hand looked like a purple mickey mouse glove. I was the lucky one.

Anastasia's clot went undiagnosed, until the day she went under general anesthesia for emergency surgery.  Her clot broke off, traveled to her lungs and she coded on the operating table with a pulmonary embolism.  They were unable to save her.

This experience made a profound impact upon my life.  Later, in college, as I was being wheeled into an operating room in Boston for my second surgery, I noticed a trace amount of swelling in my fingers.  All scrubbed into their operation, my team of surgeons did their best to convince me that it was nothing.  

I knew that this was not how my story was supposed to go; I disagreed with their assessment.  

I revoked my consent on the operating table. And I asked for an ultrasound to locate what I believed to be another undiagnosed blood clot at the end of my central IV, called a PICC line. Reluctantly, they agreed. The ultrasound revealed a clot.

Fast forward seven years, multiple surgeries, and 5 identical blood clots later: I found myself on an operating table in need of central access, once again. This time, my care team knew this story well, and everyone was in agreement-- we would not be repeating that same procedure.

Yet, down in the OR, they began to numb the fold of my arm, prepping me for a dreaded PICC line. I froze. This was not the verbally agreed upon plan. In a panic, I recited my story. The folks in the masks were unconvinced by my invisible history.

Within 24 hours, I had a deep vein thrombosis in my right subclavian artery.  It moved to my lungs, and I had a pulmonary embolism.  

Why am I sharing this story with you today-- and what does it have to do with standards for patient generated data?

Patients are a vital source tacit knowledge, not always included in the medical record.  Yet, we have but minutes at the point of care to verbally transfer up to a decade of experience and preferences for care.  

Democracy is defined by participation, so how can it be that our health records are not?  

Patients make life and death decisions with the aid of this document. We should have a right to see it when it matters most-- when decisions are being made-- not 30 days after. Our constitutions physically and as a nation should align in the electronic health record where life, liberty and pursuit of happiness rely equally upon them both.

As an incoming student at UC Berkeley, they tell us you have all the resources to change the world.  I believed them, and with a grant from the Robert Wood Johnson Foundation, I set out to give patients a voice in their care that I never had.  

We developed an app that enables patients to record observations of daily living, allowing them to visualize their experience on an iPad, which they can share with their providers at the point of care.  It can track pain via SMS, weight from a wifi weight scale, and sleep and activity via a Fitbit activity monitor, in addition to medication adherence and lab results entered on an iPhone, among other measures, equipping a more complete view of a patient's health.  

The simple idea was to create a common frame for collaboration: to empower a patient and provider to see and discuss the same health story at the same time, when it matters most-- face to face, at the point of care.

However, in our findings from Project HealthDesign, we discovered technical barriers to collaboration in the workflow.  Patients were hand transcribing lab data from their patient portal into our app, as a means to see their data all together, in context.  Physicians were able to see trending daily weight values on their patients for the first time, instead of at the usual 3 month intervals they're used to. Yet, they still had to 'eyeball' the graph, and write a text note for the chart, losing the value of the data itself. 

What I am here to say to you today is: please make meaningful use a dynamic two way street-- a national, open API for health record data.  

Grant patients easily consumable access to their data on mobile devices, and make interaction with health data as simple for a patient as logging into Facebook or Twitter-- or their bank.  Besides unleashing an ecosystem of innovation for app developers, it can engage patients and caregivers in their health on a scale equal to the great challenges we face.  

By removing these barriers to collaboration, it will unlock the potential of mobile devices to function like the digital equivalent of the patient whiteboards hanging in virtually every hospital room across the country.

Above all, please enable patients, providers and caregivers to see the same story at the same time: it will empower them to write that happy ending that our system deprives thousands of Americans who, unlike me, are losing their lives to easily preventable medical errors every day of every year, as we speak.  

Thank you.