Record Your Important Health Conversations With Abridge

Lacuna Loft is always on the lookout for resources, tools, and other organizations who are helping the young adult cancer community.  We like partnering with them and we LOVE sharing them with you!  Today, I’m super excited to share a great new app that was recently released by Abridge.

Their app lets you record a conversation with your doctor, then it transcribes the verbal conversation into text, and picks out the really important parts.  You can easily tap on any medical moment to replay that specific part of the audio, so you can quickly get to the part you want to relisten to. This makes it so you can easily go back to confirm details you missed, or share the conversation with someone who wasn’t able to be there with you. Plus, the app maintains your privacy and never sells your data! The info you record is for your eyes only (or for whoever you specifically share it with) to better stay on top of all of those details you get at a doctor’s visit.

Our CEO, Mallory, and one of our program participants, Megs, recently tried out the app and are sharing their thoughts with us today!  Plus, you can scroll to the bottom of this post to see an easy gif describing the app!

Megs:

I’m excited to share my experience with this new cancer app called Abridge. The app helps patients and their caregivers record their health conversations with healthcare providers. It then takes those verbal conversations, transcribes them, and picks out the really important parts.

It was easy to register. More importantly, it was super easy to use.

I used it for my appointment with my palliative care doctor. I simply asked my nurse and then doctor if I could record our discussion. I pulled up the app and hit the record button. BOOM!

You can pause it and then keep recording until you’re completely done with the appointment. Once you hit the done button, you can save it and input a title for the recording. The app will work its magic and gather the important insights from the conversations with your healthcare providers.

Then it produces a transcription of every word spoken highlighting important keywords. The type is clear. It breaks down the conversation and timestamps it.

From there, you can share it with your family and anyone else who has downloaded the app. You can write a message, which is optional, input their email address and the app sends the message. The receiver of the message will see your personal message and then directions to download the app and register. Once registered, they can hit play and listen to your recording.

I’m impressed with this app. I find it a necessary tool for every doctor appointment. We’re often hit with so much information when talking with our doctors that we can miss other key information. This app captures every word. It allows us to fully process what is said in each visit afterward.

I highly recommend this app to every cancer patient and their caregivers. It will take the pressure off trying to take notes during the appointment so you can be fully present in the moment.

Mallory:

I tried out the Abridge app at an appointment with my OBGYN.  I was able to easily start the recording with a simple press of a button and it picked up both my own audio and that of my physician.  The app made it really easy to go back and look at what my doctor had suggested…my appointment was later in the afternoon and my attention span isn’t always as good after lunch. 😉  I was also able to email a link to the recording to my husband who wasn’t able to go with me.  The app made sharing my appointment’s transcription and audio very straight forward.

Later in the week, I actually used the app again to record my half of a phone conversation with another doctor, one taking care of a family member of mine.  I sometimes get off the phone with her and realize that I remember more of my own questions than I do her responses.  While the app could only pick up my audio, I basically repeated back to her everything she suggested so the app recording could pick it up (and so I could go back and look at it later!).  In the call, the dosage of both medications my family member needs was being changed,  as well as how often to take them.  Later in the afternoon, I realized that I couldn’t remember which new instructions belonged to which medication.  I was able to readily go into Abridge and check both the audio and the transcription to safely check what the physician had told me.  It saved me a call to the doctor’s office, because we all know how long that turn around time could be, and it gave me peace of mind right away.

I’d highly recommend this app.  It’s easy, right there on your smartphone, and takes all of the guesswork out of what details I could recall after an important health conversation with my doctor!

And that’s it!  Two recommendations for a great new tool to help you take better charge of your own healthcare.  Download the app today and let us know how you’re finding it!

Support The Metastatic Breast Cancer Access To Care Act

capitol hill

Our friends over at the Young Survival Coalition have just shared this great, legislative advocacy opportunity with us and we couldn’t wait to share it with you!

From now through September 9, you have an important opportunity to make your voice count!   The Metastatic Breast Cancer Access to Care Act is an important legislative priority of the National Breast Cancer Coalition that concerns Medicare and Social Security eligibility for metastatic breast cancer patients.

If passed, HR 2178/S 1374 would waive the 24-month waiting period for Medicare eligibility and the 5-month waiting period for Social Security Disability Insurance benefits.

During August, Congress is on a break, so it’s a great time to reach out.  You are your own best advocate, and this is an important opportunity to make a difference!

Take action today!

August Will Be Here Before You Know It

august calendar

Lacuna Loft is taking a program break over the month of July.  We’ve just hired Employee #2, we’re growing and reaching further into the young adult cancer space, and we’re very excited about getting back to you in August with more wonderful programs.

What will we do in July?  Trust us, it’s not a vacation 😉  We’ll be strategically planning, onboarding, grant writing, program planning, evaluating, dreaming, scheming, networking, and talking young adult cancer survivorship to anyone who will listen!

If you’d like to read through young-adult-cancer stories and voices while we’re on our July program break, check out our blog!  The archives are extensive…dating back to when we first launched our website in March 2014!  Interested in searching more by topic?  Hit up our main page and scroll down until you see the phrase, “Are you interested in…” followed by a bunch of little circles detailing different topics you can explore!

Have a wonderful July!  We’ll see you in August!

We’ve Hired A Chief Program Officer!

aerial welcome

I announce today, with immense pleasure, that Lacuna Loft has hired a Chief Program Officer!  We are now a powerful staff of two, fully dedicated to bringing age-appropriate support programs to young adult cancer patients, survivors, and caregivers through a medium that fits their lifestyle.  With the added staff power, we’ll be able to expand how many young adults can fit into our online programs, grow our reach even further into the young adult cancer community, and talk AYA cancer survivorship to even more people.

Lacuna Loft has been a labor of love over the past 4 years and I am so excited to bring another staff member onto the team.  Please join me in welcoming Aerial Donovan!

Aerial is excited to join the Lacuna Loft staff. She has spent the last couple of years as the VP of Programs at GRYT Health where she dedicated her time to helping the cancer community learn about resources, education about patient rights, and encouraging engagement among peers.  Aerial has experience coordinating educational, psychosocial, and community programs.  She has a science background with specialized interests in sports medicine and medicine.  Aerial is passionate about ensuring not only patients get the support system they need, but caregivers, advocates, and others affected by cancer as well.  After caregiving for her dad, she is determined to continue that support on through the end of treatment.  She has experience volunteering with several cancer organizations including Imerman’s Angels, Stupid Cancer, and previously with Lacuna Loft.

Are You A Healthcare Provider?

stethescope

Healthcare providers are a critically important part of the young adult oncology world and we are so excited that you’re here!  There are many things happening at Lacuna Loft, all geared toward offering young adult cancer patients, survivors, and caregivers (ages 18-45) the support and resources they need to thrive.  Our programs are all offered online so young adult cancer survivors living absolutely anywhere can participate and connect with their young adult cancer survivor peers, either directly through our website or through a video chat platform.

There are several different ways we can work together!

  1. Interested in some materials to offer your patients? Fill out this form and we’ll mail some to you!  On that same form, you can also sign up for our healthcare provider email list to receive periodic program updates!
  2. We can help you bring our online programs directly to your group of young adult cancer patients.  Email mallory@lacunaloft.org for more information on possible programs and other logistics.
  3. Want to share your knowledge on a certain topic?  We can help provide you an online platform to reach young adult cancer patients, survivors, and caregivers, helping spread knowledge to a wider audience! (email mallory@lacunaloft.org for more info)

Want any more information or have a question?  Email info@lacunaloft.org.  We’d love to hear from you!

P.S.  Are you a young adult cancer patient or survivor and want us to chat with your healthcare provider?  Get in contact with us and we can help make that happen!

What Is Your Elephant?

elephants and tea logo

Have you heard about the new adolescent and young adult cancer focused magazine?  Elephants and Tea is the only magazine written for and by adolescent and young adult (AYA) cancer patients, survivors, and caregivers telling their story in their own words.  Cancer is the Elephant in the room.  Tea is the relief the magazine will provide.

Elephants and Tea’s mission is to help AYA patients, survivors, and caregivers experience relief through self-expression, inspire others during their cancer journey, and connect with supportive organizations across the nation.

Cool right?!  Another place to get great, young adult cancer content whenever you need it!  Check out their online magazine today!  (And when you subscribe, you can also sign up for the print version! woot!)

Become An Empowered Survivor Or Advocate At A Triage Cancer Conference!

triage cancer conferences

Lacuna Loft is happy to be a sponsor of the Triage Cancer Conference series! The Triage Cancer Conferences provide individuals diagnosed with cancer, caregivers, advocates, and oncology healthcare professionals, with valuable information about understanding your health insurance options, navigating employment issues, managing finances, and more. Register for FREE here!  2019 Conferences will be in Chicago, IL, Chapel Hill, NC, & Houston, TX – travel grants are available!

Who should attend?

Individuals diagnosed with cancer, caregivers, health care professionals, & advocates will learn about:
– Understanding health insurance, picking a health insurance plan, and appealing denials
– Accessing clinical trials
– How to work through treatment or take time off
– Applying for disability insurance
– Estate planning and other important documents
– Managing medical bills, finances, and getting financial help
– Becoming an empowered patient and advocate
– Dealing with how to grow after trauma

Become an empowered survivor or advocate today by attending a Triage Cancer Conference!

“Genetic Testing in Oncology To Improve Clinical Outcomes”

myoncopath white paper

I’m super excited to share a white paper with you today from MyOncoPath, an innovative company helping cancer patients and their healthcare providers identify genetic testing that could play a role in personalizing cancer treatment plans.  They also provide a hereditary risk assessment for patients and family members with preventative care.  They are a telemedicine clinic working to support patients and healthcare providers!

Genetic testing is one of those things that we keep hearing more and more about but it’s great when a company actually explains a topic’s importance and breaks down all of those clinical-sounding terms!  MyOncoPath has written a white paper doing just those things, entitled, “Use of Genetic Testing in Oncology to Improve Clinical Outcomes in Preventative Care and Personalized Medicine.”

“Hereditary tests are important for patients already diagnosed with cancer, as the results can expose crucial information about the specific, most effective treatments available, the patient’s risk of cancer recurrence, and the risk of the patient’s blood relatives developing cancer.”

Check out the rest of the report!

Want to Make Real Change In 5 Minutes?

telephone booth

Young adult cancer patient and survivor stories and voices are powerful.  When you use your voice to help make change, you are helping yourself and every other cancer patient and survivor who comes after you have better access to support and care.  This morning I got an email from the Leukemia & Lymphoma Society with really important information on how you can, in just a few minutes, make change with your voice in a very tangible way.  It only takes a few minutes to call the number below and they’ve even provided speaking points so you don’t have to figure out what to say by yourself if you don’t want to!  Will you call today?  I did!

Congress is considering an important bill this week that would stop the spread of dangerous junk insurance plans which discriminate against patients with pre-existing conditions. This is just one of seven bills that have been packaged together to protect and expand meaningful health care access and promote affordability for patients.

We have a chance to pass this meaningful legislation and protect patients, and we need your voice with us to convince Congress to act. Will you make your 1 minute call today?

Just dial 1-855-980-5634 to be connected with your representative – a recording will walk you through some talking points, and we’ve also included a script below. When someone at the office picks up, just say:

Hi, I’m [your name], one of your constituents from [your city]. I’m calling to ask my elected officials to stand with cancer patients and vote YES on H.R. 987 to stop discrimination against patients based on pre-existing conditions. The Strengthening Health Care and Lowering Prescription Drug Costs Act will protect and expand meaningful health care access and promote affordability for patients across the country.

[If you want, you can tell them why this issue matters to you and your loved ones.]

It’ll only take a minute, but your quick call will help rein in junk insurance plans.

These plans are meant to cover short periods of time – but they use dangerous loopholes to avoid important patient protections: they often have no limit on cost-sharing, no guaranteed coverage for essential cancer care like prescription drugs and no protection against annual or lifetime limits on care. Without these protections, cancer treatment is often out of reach.

Please call 1-855-980-5634 today to support H.R. 987 and then forward this message to your friends and family and ask them to do the same.

Interested In Getting More Physically Active?

impact study poster

Are you a young adult cancer survivor interested in getting more physically active?

Researchers at the University of North Carolina at Chapel Hill are studying ways to promote physical activity among young adult cancer survivors using Fitbit activity trackers and Facebook. They are seeking volunteers to enroll in a 12-month research study that tests a physical activity program designed specifically for young adult cancer survivors.

If you participate you will receive a Fitbit activity tracker, information about physical activity, a digital smart scale, and access to a Facebook group. You will be asked to complete online questionnaires 4 times and may receive access to a personalized physical activity website. You will receive up to $160 for completion of all study questionnaires and measurements. The entire 12-month study can be completed online.

You may be eligible if you:

— are 18 to 39 years old

— were diagnosed with cancer (excluding non-melanoma skin cancer) at age 18 or older

— have completed cancer treatment

Additional eligibility criteria apply.

For more information and to see if you qualify, please visit http://www.impactunc.org.