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Denise Brock

GRACE Partners with Patient Resource Publishing

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Recently GRACE has been working with Patient Resource to provide information made available through the current issue of their patient guide, focusing on cancer survivorship. Our founder and president, Dr. Jack West offers a message of “Survivorship and Your Path Forward” found on page 2 of the guide.  

Patient Resource is the leading national consumer based publication serving cancer patients, caregivers, survivors, and the medical community supporting them. It is written by a distinguished team of medical writers and overseen by a medical board of directors, including some of the country’s most widely respected oncologists. More than one million copies are distributed free of charge at more than 7,000 medical facilities across the country each year. 
 
The goal of Patient Resource LLC is to empower people who are suffering with life-altering diseases by giving them the most comprehensive and up-to-date guides to treatment and facilities for their disease free of charge. The information is written for ease of understanding and is offered in printed publications and online at PatientResource.com. GRACE is pleased to have partnered with them to produce their latest patient guide. A downloadable PDF of this document is available here.

 


 Please feel free to offer comments and raise questions in our Discussion Forums.


 


Denise Brock

ASCO 2017, Editing in Process!

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We love our community and all of the people who help to make GRACE what it is.  Jim (@JimC Forum Moderator ) and Janine (@catdander forum moderator) are outstanding, and their knowledge and willingness to help people who come to GRACE, as well as their dedication is nothing short of amazing.  We also love people we see once a year local to Chicago who come volunteer at our booth to give weary staff a break (our friend Dan each year helps out at the booth, James has in previous years graciously offered office space for early morning filming…). Every little bit of connection we have made with faculty, users of GRACE, patient advocates, and other advocacy groups shows that this community goes beyond GRACE as an organization, it is a group of people helping people, giving where they can and sharing information to help others.  When we help others, we help ourselves.   

Jim and his significant other, Lisa – as always, met us in Chicago to join us for a small gathering – where we took the opportunity to thank everyone for their very important work. We are so grateful for the faculty, and for all of the other people who help to make GRACE happen.    


We were once again honored to be part of the ASCO sponsored Patient Advocacy Booth, where we shared our information with other advocacy groups and oncologists from all over the world.  Jim and Lisa were also able to join us for a short volunteer stint in the exhibits hall, where they were able to walk through the booths and see what happens when 40,000 oncologists from all over the world convene at McCormick Place.   

Jim C, moderator extraordinaire, knowing our community well, posted earlier in the forums a link to the ASCO abstracts for people to review, with the following perfect and short description of ASCO – “Each year the oncology world gathers in Chicago in the first week of June for the ASCO (American Society of Clinical Oncology) conference, at which much of the year’s major research findings are unveiled”. 

Though post-meeting the abstracts are not now available, as we edit our videos from ASCO to share with our community, we invite you to review the meeting information they have made available.   The ASCO meeting library is available here:  http://meetinglibrary.asco.org/ and other good info from the attendee resource center can be found here: https://am.asco.org/arc/attendee-resource-center.  

The Washington Post did a nice overview about ASCO here: https://www.washingtonpost.com/news/to-your-health/wp/2017/06/06/7-attention-grabbing-topics-at-the-nations-biggest-cancer-meeting/?utm_term=.c02fc09fced9.

Stay tuned for our roundtable videos on the newest information presented at ASCO 2017!  


 

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 Please feel free to offer comments and raise questions in our Discussion Forums.


 


Denise Brock

GRACE at ASCO 2017

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As in previous years, GRACE will have a booth in the exhibit hall at the ASCO annual meeting at McCormick Place in Chicago, Illinois. We are excited to again be able to meet with potential partners and other patient advocacy groups during this event!

This year promises to again be full of interesting and new information with exciting news about trials and treatments.  Dr. West will be racing around at breakneck speed, taking it all in and gathering information to report back to GRACE.  Carlea Bauman, our Executive Director will be in back to back meetings – networking and meeting with potential partners.  Our program coordinator Laura Giannini will be working with our faculty on roundtable videos, and – like usual – I will be coordinating and managing the booth, volunteers, scheduling and keeping things working behind the scenes (we keep a supply of band-aids at the booth for weary GRACE feet). We love our trips to Chicago and being involved with ASCO, and are honored to have been chosen once again to be a part of the ASCO-Sponsored Patient Advocacy Booth.

If you happen to be at ASCO this year, come by the exhibit hall and booth 3005 and say “hi” to the GRACE staff. (We have cool pens!)  We are always excited to meet new faculty and GRACE friends.  

Also as in years past, keep your eye on the GRACE website for new videos and posts recapping information from this year’s annual meeting.  For information from last year’s meeting, take a look at the videos from 2016!

Here is a little walk down memory lane…


 

Please feel free to offer comments and raise questions in our Discussion Forums.


 


Denise Brock

Server Slowdowns and GRACE Update

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You may have noticed some frustrating server issues with GRACE these past few days.  Our true apologies – we are working diligently with our provider to solve these issues.  We ask you for patience, and we will be hopefully trouble free as soon as possible.  


Recent cancerGRACE.org issues have made me feel that it is a great time to give people a sneak peek at what we are working on behind the scenes.  GRACE is past due for an upgrade – and we have decided to give the site a shiny new coat of paint. Soon you will be seeing a new site when you log in to GRACE – and while change is always a little tough – we think you will like what you see.  

Our great development team at FUSEIQ based in Seattle has shown that they have a wonderful understanding of what we do and what we are trying to do.  They have worked with many nonprofits and have an excellent team who have been patient and understanding with our requests.  Their knowledge has been guiding us to develop a site that is intuitive, easy to navigate and much easier to find the important information that is so integral to the heart of GRACE.  We also will be implementing a new structure for our FORUMS – yes – many of the abilities that we have been promising since the last upgrade will finally be available.  Welcome back, personal messaging! 

Another very very exciting part of this rebuild is that we are giving you – our members – more control over what information you want to see.  When you have an account on GRACE, you will be able to personalize your dashboard so you see the information you want to see!  As GRACE grows, we hope to provide more and more information about different types of cancers.  We also know that not everyone – though it is all incredibly interesting and educational – wants to wade through new information on types of cancers that are not necessarily pertinent to them.  The new GRACE site will allow you to determine what feeds you get to see daily on your own dashboard.  You also can always default to the main page to see what is new, available site wide.  Here is a sneak peek! 

The GRACE main page mockup and design:

 Please feel free to offer comments and raise questions in our Discussion Forums.


Do you want to help us reach our goal?  

AS you know, GRACE is a nonprofit run solely on grants and donations from our users.   Funding is tight – and we hope to be able to launch the new site not only as a pretty new thing, but with our content and data migrated over successfully.  Operational tasks are always tough to find funding for!   

If you would like to help us reach our goal, you can donate HERE.  


 

 


Dr. Jack West – Social Media in Healthcare

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Buddy Scalera is a podcaster and Senior Director of Content Strategy in Global Health Science at the Medicines Company, and has been a member of the GRACE board of directors since 2011.   We are thankful to Buddy for his ongoing input to GRACE, and allowing us to share this interview with GRACE founder and president Jack West, MD.  


Recently Dr. Jack West made a special guest appearance on RxDM Storycast, with Buddy Scalera.  In this interview on the RX Digital Marketing Podcast, Dr. West discusses GRACE and topics related to storytelling in healthcare, the role of social media in healthcare, and the ways that the pharmaceutical industry can work effectively with non-government organizations.  

The full one-hour audio podcast and full transcript are available for free at the RXDigitalMarketing.com website, available here, or clicking the image below.

 “I think that oncologists and physicians, in general, have become enamored of statistics and evidence-based medicine, and of course that is really, has been in many ways, a benefit in the sophisticated way we think about treating patients,” explains Dr. West in the podcast, “but lost is the fact that everybody’s brain is really equipped best to think about narratives, about stories.”


The RX Digital Marketing podcast covers a wide range of topics, including ways that patients and professionals leverage social media for support. Dr. West spoke about early social networks during his TEDx talk in 2011. Buddy Scalera and Dr. West review key points from that presentation, as well. Dr. West’s TEDx talk can be viewed here


Please feel free to offer comments and raise questions in our Discussion Forums.


 

About Buddy Scalera

Senior Director, Content Strategy
Global Health Science, The Medicines Company

Buddy is a strategic thought leader in new media technologies with 16+ years of digital content strategy experience. He has written and spoken extensively about healthcare marketing, social networks, marketing storytelling, web technologies and multimedia. He is the author of five mass market books on content, creative techniques, and process. He launched and maintained award-winning health information websites and was one of the driving forces behind placing the first pharmaceutical brand on a social network. At The Medicines Company, Buddy is the Senior Director of Content Strategy in the Global Health Sciences division. 

Twitter: @BuddyScalera

Website: BuddyScalera.com


 


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