#Dazzle4Rare Campaign

The #gyncsm community supports women diagnosed with a number of gynecologic cancers that are considered by the NIH to be rare diseases. In an effort to raise awareness that Ovarian, Endometrial/Uterine, Fallopian Tube, Gestational Trophoblastic Disease, Vaginal and Vulvar Cancers are rare diseases, #gyncsm supports the #Dazzle4Rare campaign. You can join the effort too. Read the post below which originally appeared on the HESA website (http://www.hesaonline.org) and join us as we support #Dazzle4Rare during the week of August 15th - 21st. 

Here's something from #gyncsm that you can share:

• Let's #Dazzle4Rare - Learn about some of the rare gynecologic cancers http://gyncsm.blogspot.com/2016/02/february-chat-rare-gyn-cancers-vuvlar.html #gyncsm

Click here to join the #Dazzle4Rare thunderclap.

#Dazzle4Rare Social Media Campaign

During the week of August 15th through the 21st HESA is going to #Dazzle4Rare. We will be tweeting, posting, liking, and sharing for rare disease. It’s projected that 1 in 10 people suffer from a rare disease [https://globalgenes.org/rare-diseases-facts-statistics/]. It’s also projected that there are at least six to seven thousand rare diseases. With 10% of the population suffering from between six and seven thousand rare diseases, it’s hard for any one rare disease group to spread awareness of their condition.

We can band together as a wider, greater community and spread awareness together and for each other. We can join hands and reach around the globe to share our messages with those who would otherwise never hear about many of these conditions. The more we speak up and speak out, the more likely we are to reach those who may need to hear our message the most.

Tag your selfies. Tell your rare disease story. Share someone else’s rare disease story. Raise awareness.

If you would like to join our #Dazzle4Rare campaign, join our discussion group. We’d love to hear your ideas, see your posts, and find out more about your organization! Let’s dazzle the World and show everyone how rare can shine!


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Dee and Christina
Founders, #gyncsm Community

August 10,2016 Chat - Shared Decision Making / Patient-Centered Care

Twenty five participants joined our moderators to discuss shared decision making and patient-centered care. We were pleased to have Kara Rayburn, Patient Empowerment Network (@power4patients) join us. You may find additional analytics here and the chat transcript here.

The questions used during the chat and some responses appear below.

T1: What would patient-centered care (PCC) look like for you? (for appointments, lab results, treatment, surgery, medical records, etc.)

• Patient-centered care would consider treatment options based on patients' unique concerns, preferences, and values
• Everything under one roof, team approach, easy-to-understand unified billing, easy referral to out-of-network specialists, Personhood, mutual respect, and caring go along with those services implicitly or it isn't PCC.
•  Patent centered care means setting up medical evaluation and treatment options with a focus on where the pt is coming from
• how about meeting me where I'm at---Text, email, phone appts.
• or my family & myself patient centered care meant including the entire family in convos & treatment planning
• In my dream world, PCC includes awareness that meeting mental health & social needs is a crucial element

T2: What is Shared Decision Making (SDM) in healthcare all about? Where can people learn more? What are tips for making it work?

• It allows pts & their HC team to make decisions together-taking into acct both the best med evidence available & pts values/prefs
• Shared medical decision making is a collaborative experience between patients and providers
• As we move closer toward "consumers" of healthcare, #SDM allows for the patient perspective to become increasingly important 
• DeMeester said “(SDM) occurs when patients/clinicians work together to reach care decisions that are both medically sound and responsive to patients’ preferences and values”
• shared decision making requires informed choices...don't be afraid to ask questions and resources to learn more!
• It sounds to me like SDM brings the values of person-centered care (Carl Rogers) to all medical settings beyond mental health.

T3: What value does a patient-centered care (PCC) / shared decision making (SDM) approach bring to patients, families and providers?

• #PCC & #SDM allow for patients and their families to be active participants in doctor consultations
• As a provider, I can have "tunnel vision", PCC and SDM help keep me grounded and focused on what is best for the patient
• There is a lot to be said for knowledge, peace of mind, & comfort of care
• "Good Outcomes" are defined by what's meaningful and valuable to the patients and their families
• I think you can tell there has been PCC/SDM if all parties feel more satisfied and informed after an encounter
• PCC & SDM are integral to the @GeneticCouns process: info can impact a patient & their entire family, no 1 right choice for all
• #PCC creates value by changing infrastructure to include EHR & access to scheduling, thus strengthening the pt-doc relationship

T4: How can patient-centered care (PCC) and shared decision making (SDF) improve care at end-of-life?

• PCC/SDM throughout the process means the end of life and discussing it don't come as a huge unexpected shock. 
• #PCC and #SDM promise to improve the experience and quality of health care, while also reduce waste, over-treatment, and costs
• #SDM takes relationship building so having that in place can only help in #EOL. It's uncomfortable territory for all involved.
• shared medical decision making is the perfect way to address end of life care - help empower patients and ensure dignity
• if the patient & their needs and wants is at the center of all discussions - May make end of life discussions easier
• Seeing a theme: PCC & SDM are processes...they continue and evolve throughout patient & provider relationship, needs change ovr time

T5: Have you seen PCC and/or SDM put into practice? What has worked well? How have you benefited?

• We all decided on best care for our loved one while being informed by Drs & social workers. Made horrible -tolerable
• PCC & SDM work best when we take time to really listen. Easy to forget in the course of a busy clinic or stressful situation
• The struggle is spending enough time to truly incorporate shared medical decision making in the context of an overbooked clinic
• I think systems where you can get lab results online - if you want them that way - are PCC

T6: What are some of the barriers to PCC and SDM? How open to these concepts are the medical community? 

• Time. Doctors are pressured to see many pts per day making it hard to build relationships and cover all pt concerns and issues 
• one factor among providers that can reduce PCC can be burn out ...more and more professional societies are starting to address
• Find the patient's perspective - the values of one patient don't match another's 
• Patients need to realize seeing other staff is not disregard for their needs, it is to make sure their needs are met
• Patient : ability to understand options, research them, learn it is ok to ask questions.

Resources shared during the chat may be found below.

Thank you Kara Rayburn for your insight and to our Health Care moderators and supporters for joining us. Remember you can always continue this conversation on Smart Patients at https://www.smartpatients.com/gyncsm.

September is Gynecologic Cancer Awareness Month and #gyncsm's Third Anniversary. Our chat topic is Gynecologic Cancer Advocacy. In addition, we will discuss the future goals of the  #gyncsm community and launch a ten question survey to help us better understand and serve our  participants. We hope to "see" you on September 14, 2016


Dee
#gyncsm co-founder

RESOURCES:

Patient Centered Care begins with Respect
https://modelingchange.blogspot.ca/2016/08/patient-centred-care-it-begins-with.html

A Person Centered Approach to the Care of a Chronic Illness
https://t.co/iyHjzfwsXX

The Role of Dignity in Health Care via @s4pm
https://t.co/M7LtmfAVky

Patient Centricity and Improving Clinical trials
https://t.co/OE5JStu0rj

@itsthebunk #MedX talk on Dignity in healthcare
https://t.co/wrVKhBpmws

@MayoClinic Shared Decision Making National Resource Center
https://t.co/wPA3YyPUwa

Robert Wood Johnson Foundation @RWJF Patient-Centered Care Collection
https://t.co/lBDils57nl

Tools for shared medical decision making by AHRQ
https://t.co/QCa7JFQy3Z

#EmpoweredPatient toolkit
https://t.co/b4ZDhbbaUK

Palliative care review of PCC
https://t.co/MguGfZWKo9

Accelerating Delivery of PC, High-Quality Cancer Care
https://t.co/o2IDKHFAep

Finding the Right Care for You
https://t.co/yWRihPYk9x

How to Communicate with Your Medical Team
https://t.co/FTBuEOy3bg

How to Tackle Physician Burnout
http://falconhca.com/how-to-tackle-physician-burnout/

Some good accounts to follow/check their website on #SDM @S4PM @IMDFoundation @PCORI

Suggestions from Smart Patients:
Society for Participatory Medicine
http://participatorymedicine.org/

Lown Institute
http://lowninstitute.org/home/vision-mission-history/

Shared Decision Making / Patient-Centered Care- August #gyncsm chat

Have you sat with your doctor to discuss what are the next steps in your treatment plan? Has your health care team asked you, "What are your goals? ". Have they given you a choice regarding follow-up tests? Have they suggested clinical trials or complimentary therapies? Have you been asked about your experience after a treatment? Physicians - Do you explain treatment outcomes in lay terms with your patients when helping them decide on a treatment? Do you refer your patients to a support group or therapist so their emotional needs are met? Nurses - Do you relay information a patient has shared with you so that accommodations can be made? These are the types of discussions that lay the groundwork for patient-centered care and shared decision making.

Maybe you've been involved in such discussions and didn't even know the terms for it or that there are people advocating for these ideas in healthcare. Maybe this is just the sort of care you have been looking for. Either way, we hope you will join us on August 10 at 9pm ET as we discuss Shared Decision Making and Patient-Centered Care. Our guest for this important chat is Kara Rayburn from the Patient Empowerment Network. She will be tweeting as @power4patients.

These questions will help guide our chat. 

T1: What would patient-centered care (PCC) look like for you? (for appointments, lab results, treatment, surgery, medical records, etc.)

T2: What is Shared Decision Making (SDM) in healthcare all about? Where can people learn more? What are tips for making it work?

T3: What value does a patient-centered care (PCC) / shared decision making (SDM) approach bring to patients, families and providers?

T4: How can patient-centered care (PCC) and shared decision making (SDF) improve care at end-of-life?

T5: Have you seen PCC and/or SDM put into practice? What has worked well? How have you benefited?

T6: What are some of the barriers to PCC and SDM? How open to these concepts are the medical community? 

If you want to do some reading prior our chat, we recommend Marie Ennis-O'Connor's recent article 

A Person Centered Approach To The Care of Chronic Illness on the Patient Empowerment Network website. 

We look forward to seeing you later this month. 

Dee

#gyncsm co-founder