PEN Blog Archives

Ending Isolation: Tips for Connecting & Resources for Support Empowered #patientchat Highlights

Last week, we hosted an Empowered #patientchat on Twitter titled Ending Isolation: Tips for Connecting & Resources for Support Empowered alongside NORD. The #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets

Increased Engagement Across Social Economic Boundaries


Ways to Improve Patient Access


Health Literacy Matters


Full Chat


For a list of all past #patientchat topics and transcripts, click here.

Health Exercises to Tap Into Your Resiliency

The current pandemic the world is facing has caused a whirlwind of emotions, especially for immunocompromised patients, including cancer patients. Every feeling, from grief to sadness, and anger to hopelessness, has been magnified as our minds take a toll and our level of vulnerability has grown.

Right now, we are doing the best we can with the knowledge, experiences, and tools that we have. A couple of ways to utilize these tools and stay grounded during this time include meditation and exercise. Below are a list of resources, including ones I have personally used, that can be utilized to build inner and outer strength.

Walking

A great form of exercise that can be done anywhere and doesn’t require any equipment. During your walks, take in the scenery around you. Challenge yourself by quickening your pace, going up and down hills, or see how far you can go in a specific amount of time.

Yoga

Another activity that requires little to no equipment. Find free videos on YouTube or look to see if a local studio is offering online classes. Yoga allows your mind to calm and your stress hormone levels to reduce as you focus on slower movements and breath work.

Aerobics or high-intensity interval training (HIIT)

Helps improve cardiovascular health and endurance through quick movements done in rounds and can utilize the entire body. YouTube and Instagram are great places to look for these types of exercises. You can also incorporate weights (if you have them) to make it more challenging.

Strength training or weight lifting

Beneficial for both men and women, and burns more calories over time. You don’t have to be buff to lift weights or even have equipment. Buckets filled with heavy items or other things with handles, soup cans, bags of flour, a dish towel, or even body weight can be used to break a sweat. Again, YouTube and Instagram are your places for videos. Pinterest can also be helpful by searching for “body weight exercises,” or “exercises with no equipment.”

  • Mastering the form of each exercise is crucial to avoid injuries. Form > the amount of weight you can lift.
  • Do each exercise slowly. Form a mind-muscle connection.
  • Don’t forget to breathe!
  • Stretch!
  • Favorite exercises:
    • Bicep curls
    • Tricep dips
    • Bent over rows (back)
    • Rear delt flys (deltoids)
    • Upright rows (shoulders/trapezoids)
    • Squats
    • Deadlifts: Romanian, sumo, one-leg, stiff-leg (hamstrings)
    • Calf raises
    • Military press (shoulders)
    • Chest press

Meditation

Meditation is a wonderful practice that can be used to mitigate negative thoughts and distractions. This is important any time, not just during quarantine! One of the best things about meditation: you don’t have to be perfect! Meditation takes dedication and practice. YouTube has free, guided meditations that can be done in any quiet space. Some have someone spreading, while others are simply music. Apps, such as Headspace and Calm, also offer guided meditations.

Steps to Improve Patient Access to Online Services

The telehealth market is expected to experience an 80% year on year growth in 2020 as a result of the pandemic, with telehealth services easing the burden on traditional healthcare systems by urging patients with mild or moderate ailments to use web-based applications for treatment or management. Telemedicine also takes the lead in the cancer care strategy during the coronavirus outbreak and will continue to play a role in the future to support symptom management, lifestyle changes, and medication protocols. Therefore, access to online services to support patients with cancer is crucial to coordinate care from availing of financial aid and medical services to legal and psychological support. Empowering the patient to take control of their overall care using internet-based technologies can improve care coordination with medical and legal professionals and may also reduce the burden on the health care system.

Learn to Navigate the Web

Of vital importance to accessing online services is knowing how to use the internet to search for resources that you may need. In addition to the basics of having an email that you use to communicate, you must familiarize yourself with the main features of browsers such as clearing cache, bookmarking, and viewing history as well as the practicality of tabbed browsing.

Another important aspect of being internet savvy is to learn to use search engines such as Google, Bing, or Duck Duck Go effectively that will enable you to find answers to queries on all types of subjects. Know that you can also filter and refine your search to yield results that are suitable to your queries. Hence, if you are looking for lawyers that can help you find financial assistance for your cancer treatment, it will save you time since most professional websites are optimized for search engines nowadays. Professional sites do this by providing relevant and authoritative content that are useful to website visitors ranking them high whenever a query is typed in the search engine and results are displayed. Keywords that are often used by surfers are also incorporated in the text and articles of sites, making these portals easy to find by search engines.

Retrieve Information and Benefit From Online Access

Now that you are confident about using internet technology, there are many things that you can do online to assist in your cancer care management. One of the constraints in cancer care is health insurance. Access to government portals and organization websites such as the Social Security Administration (SSA) for disability insurance benefits or the Cancer Financial Assistance Coalition (CFAC) which offers a data base of financial resources can already give you leads on where to get financial aid.

Although many people are benefiting from treatment outside of hospitals due to mounting medical costs, declining number of doctors, and an older cohort of patients who are living longer, outpatient care can lead to a decrease in support delivered by health care staff. The good news is internet-based tech including patient portals, websites, and apps can tip the scale to balance the perceived support deficiency.

The ability to access health records, choose health providers and place of treatment, book and cancel appointments online, find psychological support, and order prescription refills virtually are major steps in cancer care management. Telephony is also another feature of the internet offering free phone calls if a patient needs to talk to a healthcare provider or specialist urgently. Other forms of communication with doctors and hospitals include forums such as message boards and instant messaging. Mobile applications to track and fight cancer also make it easy for patients to sign up for trials and access research results and other information on the go.

Improved access to online services by learning to navigate the web efficiently and effectively can open up an entire virtual world to a person with cancer. It also empowers a patient by managing the coordination of their condition with different actors such as oncologists, lawyers, therapists, and psychologists.

A Complete Breakdown of Telemedicine

Interview with Joe Kvedar, MD, President, American Telemedicine Association (ATA) Professor of Dermatology, Harvard Medical School Physician Scientist, Author. As the only organization completely focused on advancing telehealth, the ATA is committed to ensuring that everyone has access to safe, affordable, and appropriate care when and where they need it, enabling the system to do more good for more people.


Honora Miller:

Dr. Kvedar, thank you for joining us.

Dr. Kvedar:

I’m delighted to be with you.

Honora Miller:

Can you tell us what telemedicine is?

Dr. Kvedar:

Well, it’s not a new concept, but since the late 1960s, people have been talking and working towards this idea that care doesn’t necessarily have to be two people in the same room at the same time — that we can use technology to connect people. Like we’re doing now with this video interview, that’s the most common type of telehealth visit, but we can also connect with patients via telephone calls.

There are various remote monitoring devices that are able to monitor an individual’s vital signs or other health measures in their homes.

Finally, in the same way we exchange emails and text messages, we can do that securely with patients, what we call e-visits, which can be very helpful, as well. So there are a variety of forms, but it’s really all about care where the patient is, when the patient needs it, and not having an individual travel to visit a doctor in person.

Honora Miller:

Can you break down the differences between the terms telehealth, virtual visits, e-visits, and virtual health?

Dr. Kvedar:

I’ll go back to the beginning when there were visionary clinicians who believed medicine could be delivered this way and were doing this kind of work. They called it telemedicine. A few years into that journey, there were a number of clinicians who felt that the same technologies could be used in other ways, including education, and so they started using the term telehealth to make it broader and more inclusive. To this day, telehealth the term that everyone is mostly comfortable with.

A few years ago, some people started to say that we needed to be able distinguish between real-time and asynchronous interactions, the same way that we have video or phone calls and emails, and that we also needed to distinguish between direct-to-patient interactions and interactions between clinicians

If it is an interaction between patient and doctor, it’s a virtual visit; if it’s between clinicians, it’s a virtual consult. For example, if a physician is caring for a stroke patient in another hospital, we call that a virtual consult. An e-visit is considered an asynchronous interaction. For instance, I’m a dermatologist, so if my patient takes a picture of a rash or skin disorder, and sends it to me via a secure portal, I could respond with a message back to the patient. That would be an e-visit.

Likewise, if the primary care doctor caring for a patient decided that she wanted a picture of something looked at and sent it to me electronically, then we call that an e-consult.

Telehealth generally encompasses four areas: virtual visits, virtual consults, e-visits and e-consults. Digital Health has become a term of art because that includes everything from robotic process automation, to artificial intelligence, and so on.

Honora Miller:

What is telemedicine remote monitoring?

Dr. Kvedar:

Well, remote monitoring is best suited for certain conditions, mostly chronic illness — conditions like congestive heart failure or high blood pressure or diabetes, particularly type 2 diabetes, when it’s helpful to have more data from the patient about their condition.

For example, if you were starting out on blood pressure medication, we could give you a blood pressure cuff to take home, so that you could take your blood pressure for a week. The cuff, connected by Bluetooth, would automatically share your BP readings with your healthcare provider.

That would be an example of home-monitoring. For people with heart failure, we might give them a wireless blood pressure cuff, weight scale and a device to measure oxygen levels in the blood, so that we can remotely monitor their vital signs.

There are a variety of opportunities to monitor all types of health measures using wearable devices like an Apple Watch, and sensors, that can remotely monitor things like an EKG, sleep patterns, daily activity and other functions.

Honora Miller:

Is the monitoring done in real-time? Or do patients supply the data as it becomes available by entering it into a portal?

Dr. Kvedar:

A lot of remote monitor is done in an asynchronous way. For example, you might step on a scale every morning, take your blood pressure and heart rate, and that personal health data is securely transmitted to your healthcare provider and winds up in your electronic health record. Then a nurse or other provider could look at your data and put in a call to you if something was not quite right, and you’d have a dialogue. Again, it could be a video call or an audio call, but you’d have a dialogue with your provider about what was going on — maybe your diet was off, or maybe you need to increase your medicine dose, but that’s typically how it’s done. It’s not usually done with real-time readings.

Honora Miller:

Can you speak to what telemedicine care looks like in the era of COVID-19?

Dr. Kvedar:

I’ll start with statistics from my own large delivery system in Boston to give you a flavor, and by the way, our numbers are not unique. February of 2020, across two academic hospitals, we did about 1600 virtual encounters. In March, we did 89,000 and in April we did 242,000. We are not unique because I’ve been talking to my colleagues around the country and everyone’s having that kind of accelerated demand for telehealth services, what we would call hockey stick growth, partly because, to help stop the spread of the virus, people need to stay at home, yet we still have to take care of our patients. The technology that you and I are using for this interview is common now, whether it be Zoom or Skype or FaceTime.

People are, for the most part, comfortable with video calls, and likewise, patients have really taken to it. Patients generally have been very, very positive. Doctors are warming to it. Many doctors are saying Gosh, there’s so many things I can do this way that I hadn’t thought about, and I’m going to continue to practice this way. So telehealth services have grown a like wildfire. Before the pandemic, mental health was the biggest user and for sure now mental health providers are still the biggest users of telehealth. In mental health care, providers are talking to the patient, so it’s very easy to make that transition. And then we mentioned chronic illness before, but it turns out that the screening questions used to decide if someone needs a COVID test can easily be asked via telehealth.

if someone is sick at home with only mild symptoms, that individual can be monitored quite well using this kind of virtual care tool set because it’s all about asking questions.

Honora Miller:

So those are the main things that we’re seeing — the use of telehealth for follow-up visits for all kinds of conditions and health concerns, mental health, as well as respiratory symptom questions to determine if individuals need additional testing for coronavirus.

I’m wondering if you can speak to whether or not health insurance coverage has kept up with the pace of change in this arena?

Dr. Kvedar:

So great question and any time you ask about insurance coverage, it is always a long answer with a lot of caveats. I’ll start with Medicare, the Centers for Medicare and Medicaid Services, the biggest payer in the country for the elderly and disabled, and they said very early on they would pay for telehealth at the same level they would pay us for seeing you in the office, so that was a big boom. They’ve since refined that to pay for telephone calls at that rate, as well. That, by the way, is really a nod to addressing disparities because there are people who can’t afford a smartphone or have broadband and we want to make sure that we get to them.

I credit the Medicare folks for seeing that. Medicare is doing very well. Medicaid is state-by-state. Reimbursement will depend upon where you live. But most states, most governors, during this State of Emergency, said that they should pay and most private payers are paying for telehealth as well, so it’s pretty rosy right now, in terms of reimbursement.

One of the things that we’re doing at the ATA is trying to make sure that enough of that reimbursement culture sticks when we move out of this health crisis so that people can continue to enjoy the benefits of this type of care delivery.

Honora Miller:

Do you think that there will be legislation required in order to have that level of coverage continue or is there going to be another mechanism to advocate for that to be the case?

Dr. Kvedar:

Again, great question. I would say that if we look at history as a guide, when Medicare decides to pay for something, private payers typically follow, and there was no need for legislation because it was something that just rippled through the medical economy. So that’s what we’re hoping will happen again. In every state Medicaid is a little bit different. Patients have found that they can get care and there’s this what I call the magic of access, quality and convenience. And when you get that kind of care delivery, everyone feels great about it.

Patients have experienced that and doctors have experienced that. I would just suggest that you listeners and readers talk to their company’s human resources person, and tell them how much they’ve enjoyed their telehealth benefit; if you are insured by the government, take the time to write your senator or representative, and tell them that you don’t want to go back to in-person only care. I think we will have to advocate some but there’s such an overwhelming positive response that I’m quite optimistic that it will stick.

Honora Miller:

Having recently experienced four or five different medical professionals interacting with me through telemedicine, I’ve noticed that there’s a different cadence to each of the visits depending on the person’s communication style and their comfort level with the medium.

How patients can prepare themselves in order to get the best possible experience out of telemedicine?

Dr. Kvedar:

Sure, but before I get to that, I would just quickly say that we’re working on doctors, too, on what we’re calling “website manner.” It used to be something that we sort of said with a chuckle, but we’re very serious about it now. And it’s things like looking directly at the camera, and dressing up so that your patient takes you seriously.

But back to your question about how patients can prepare for a telehealth visit. I’d suggest everyone think about being more conscious of the information that your doctor needs to help you, either in making a diagnosis or by helping you with a care plan. For example, when we were able to have office visits back in the day — that was only several weeks ago — the doctor was asking questions, they listened to your lungs, your heart, even indicators such as your speech pattern or if you look your doctor in the eye. They were collecting information constantly during that office visit. So, let’s say, you’re a patient with diabetes. You should make sure you have your blood sugar readings handy.

Let’s say you’ve been following your blood pressure, make sure you have your blood pressure readings handy.

For me, as a dermatologist, it’s so important that we have good images of whatever it is on your skin that you need looked at. So it’s really thinking through what information your provider needs, and sometimes a doctor will help you. In our case, in advance of a telehealth interaction, we send patients information about how to take good quality pictures of their skin condition. So we’re learning, too.

Also, make sure you have your questions ready in advance, which is always good advice, both for an in-person or virtual visit, so that you get all your questions answered.

Make sure you have all the information about your condition that you can gather and make sure you have your questions prepared.

Honora Miller:

In relation to lab tests that a patient may need to get, how does that work in the telemedicine context?

Dr. Kvedar:

Well, that’s a wonderful question. Notwithstanding home pregnancy tests and the like, there are a number of companies making great strides towards taking a drop or two of blood and having a test done in the home, so we can look forward to that in the future.

In the meantime, the answer is, you need to go to a lab, hospital or clinic for testing, which is in most cases what happens currently. Things like genetic tests can be done with saliva, so some samples can be packaged from the home and shipped to a lab to be evaluated.

So it depends on the test, but unfortunately, for a lot of these tests, we still have to send people to a lab to get a blood specimen drawn or to leave a urine or stool specimen.

Honora Miller:

How can patients best identify whether their doctors provide a telemedicine option?

Dr. Kvedar:

Well, these days, I think most doctors are being very proactive, because we have this dilemma, where we want to take care of you but we’re discouraging you from coming to healthcare facilities because of the risk of contracting the virus.

If your doctor hasn’t reached out to you and you feel like you need a consultation or some care, reach out to your doctor and ask them what telehealth platform they’re using.

The government also said in the middle of March, when they relaxed the reimbursement rules, that providers could use any technology right now that we wanted during this crisis, including FaceTime, Skype, Google Hangouts, Zoom et cetera.

I’ve been telling patients, if you’re comfortable, there’s no harm in asking your doctor’s office if they will talk with you via FaceTime or another platform. I would say the first step is to ask your provider. Most people can also get access to basic telehealth services through large pharmacy chains. If you happen to have a CVS app on your phone or a Walgreens app, you can get a telehealth visit that way as well.

Most health plans, even before this health crisis, would offer an option for you to get a telehealth visit. I hope your doctor is responsive and he/she should be, but in the event that your provider isn’t offering telehealth visits, other options exist.

Honora Miller:

Can you speak to what tools a patient will need to adequately engage with patient portals?

Dr. Kvedar:

Patient portals have been around for a long time. However, I would give us a bit of a black eye on making them user-friendly. I don’t think we’ve done a very good job of that. And again, this is a patient empowerment conversation, and I don’t know that we’ve done a very good job of empowering people to interact with us through those tools.

That said, all of a sudden now patient portals have become a primary way you’re interacting with your healthcare providers, so we’re upping our game. It’s too bad it takes a crisis but there it is, and I think we’ll get much, much better.

I often say, every service you consume other than healthcare has a digital front end that has a way of interacting with software to get things done easily. For example, you take a picture of your check and deposit in your bank account with just a few taps on your smartphone. There’s millions of examples now, and health care is just getting going in that regard.

The patient portal story is really mostly about security, that is to say, it’s a very secure electronic environment for you to interact with your healthcare provider. The basic things that you can do there, apart from doing a virtual visit, is to do billing information, usually there’s a way to get a list of your medications, ask for prescription refills, schedule appointments, get letters for things like school physicals, and that the like. Nowadays, those things can be handled electronically.

There’s a little bit of, I would say, activation energy for some people, because signing up can be complicated.

It is so secure you are sometimes required to submit a letter or do something extra than you would to sign up for a normal website, all in good intent. I would urge people to put up with whatever barrier hits you in the beginning. Once you get involved with a patient portal, and we’re working very hard now to make it a really a good experience for you, patients will be able to not only interact with us as providers, but you will be able to access all kinds of information and services offered by your healthcare system, access lots of information from your record and so forth.

Honora Miller:

As a cancer patient, and for others living with chronic conditions, how might telemedicine impact the future of survivorship?

Dr. Kvedar:

It’s a great question. One aspect of survivorship is things like living wills which, if it isn’t done electronically, we will have to move in that direction, to enable that. There is a lot of interest in interactivity with palliative care and hospice around how to better care for patients, particularly around medication management. Patients can be afraid of opiates and sometimes they’re in terrible pain, so we need to get this right. So those are a couple of examples.

Honora Miller:

Is a potential for telemedicine to be used in lieu of in-person visits to such an extent that the medical provider doesn’t get to see the patient enough to pick up on subtleties that are crucial? Can you share any insights about this concern?

Dr. Kvedar:

I think that’s wonderful insight and we are definitely grappling with that for sure, especially now that telehealth use has surged. Before this pandemic hit, we had only one channel healthcare delivery to come to the hospital or doctor’s office. Now of course the answer is, let’s do a telehealth visit.

But the truth is somewhere in the middle, and I trust clinicians to have good instincts about that.

For instance, patients that we’re treating for a chronic illness, maybe we do every other visit in the office so that we can have that face time and actual interactivity. There’s something about in-person interactions with patients that’s very special. I take care of patients with acne, for example, and arguably that can be done online. But I would say we’ll probably end up doing every other visit in the office, because you want to get to know the patient, their family, etcetera. It’s just that right now where we don’t really have a choice.

Honora Miller:

Can you speak to privacy concerns around telemedicine?

Dr. Kvedar:

Forty-eight states have temporarily loosened their licensure restrictions in response to the pandemic. As, a patient, that may or may not hit your radar, depending upon where you live. Here in Eastern Massachusetts, I have a medical license in Massachusetts, but regularly take care of patients who live in New Hampshire and Rhode Island, because they often had come in for office visits. So now if we’re doing follow-up care, there’s a mechanism where I can still take care of them, even though I don’t have a medical license in those two other states.

Waiving restrictions on state licensure is important to point out because it’s really enabling us to again deliver better care to more people. The question then becomes, after this crisis is over, will we have to go back to the very old-fashioned, state-by-state geographic border-based care delivery model? This is something that the ATA is working on, as well as the need to maintain patient privacy, especially for providers using telehealth for the first time, who may not be familiar with these new procedures.

I would also point out that the biggest part of health data security is how we record that visit in the medical record, and that hasn’t changed. We do that in a very secure way. It’s something we take very seriously. And I don’t mean to say that you’d never get hacked. It’s part of reality that anyone can get hacked any time, but I don’t believe it’s something that should get in the way of delivering care.

Honora Miller:

Thank you, these are interesting times and we are moving at an amazing speed, and just the incredible growth that you described it really is a testament to how there can be interesting unintended consequences of a pandemic. Thank you very much for joining us and for you sharing your expertise.

Dr. Kvedar:

It’s been a real honor and pleasure.

Care Partner’s Checklist During a Crisis


 

PEN’s Care Partner Network Manager, Sherea Cary, shares her tips for care partners during a crisis:

 

Patient Access: Let’s Talk Health Care Technology #patientchat Highlights

Last week, we hosted an Empowered #patientchat on Twitter titled Patient Access: Let’s Talk Health Care Technology. The #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets

Increased Engagement Across Social Economic Boundaries


Ways to Improve Patient Access


Health Literacy Matters


Full Chat


 

Cancer Patient and Care Partner Tips for Keeping Busy During A Pandemic

Cancer Patient and Care Partner Tips for Keeping Busy During Pandemic from Patient Empowerment Network on Vimeo.

MPN managers Summer and Jeff share tips for keeping busy during a crisis. They both share how exercise, scrapbooking, and zoom improvisational theater has kept them occupied.

Summer, who lives with myelofibrosis, shares her experience with getting her regular blood draw and some of the new procedures in place allowing her visit to be smooth.

How are you keeping busy? Let Summer and Jeff know: question@powerfulpatients.org

How to Make the Most of a Virtual Visit

“Well, we need to check your titer,” the doctor explained as he went over my lab results via a recent Zoom call. “Titer?” I thought. I know I’ve heard that term before, but I wasn’t really sure what it meant. The doctor reappeared the word a few more times, exacerbating my confusion. I was too embarrassed to ask what he meant; he was talking quickly. When he eventually said, “The titer is the strength of the antibodies in your blood,” I finally understood and felt more at ease.

As we face this pandemic, chronic and/or rare disease patients like myself are facing an extension of the “new normal” that everyone is experiencing firsthand. Our doctor’s appointments are critical times when we’re able to explain how we’re feeling, how our medication may or may not be working, and what the next steps are. But our visits become different when our face to face sessions turn virtual. I believe we become more vulnerable, as we invite the doctors into our home lives.

While healthcare has certainly come a long way and telemedicine has been on the horizon, virtual visits are now the norm. We have been placed, both as patient and healthcare professionals, in a position that allows us to take advantage of the technology we have and still provide and receive great care. In my opinion, these visits should not be considered a hassle, but rather an encounter that continues to focus on patient education as we face unprecedented times.

A part of patient education is health literacy. Health literacy can be defined in many ways, but the short, paraphrased version is that health literacy is the ability of patients to understand health information (verbal, visual, etc.) in order to make the best decisions about their health. This includes understanding the messages that are being conveyed to them by health professionals, including symptoms to look for and how to take medication. The case remains the same whether visits are in-person or virtual, perhaps with greater emphasis on the latter, in my opinion.

Below, I will highlight things that patients can do to make the most of their health appointment, with a focus on health literacy.

Tips for Patients

  1. Discuss any information you have questions about during your appointment, especially if it has jargon you don’t understand
  2. If a doctor speaks too quickly, tell them to slow down or repeat what they said
  3. Take notes during your appointment if having something visual helps you remember
  4. If your doctor mentions a word you’ve never heard of, ask them to define it
  5. Share your understanding of how a certain medication or treatment is helping you and/or if you think something could work better
  6. If you’re unsure of how to take a medication, show the label to your doctor to have them explain
  7. If you are provided with test results, ask your doctor to review them carefully with clear language

How to Create a Month’s Worth of Posts for Your Advocacy Blog

Are you looking for a way to boost your advocacy activities online?

One of the best ways to do this is to create a blog.  Blogging shows your commitment and passion for your cause and because a blog is interactive, it’s also an extremely effective way to build a community and engage more people in your cause.

If you are brand new to blogging, and not quite sure how to start a blog, this step-by-step guide will get you up and running.

Many of us who blog start out with great intentions of writing regularly, but over time our inspiration well can run dry. Creating a blog is relatively easy; the challenge lies in consistently creating fresh content. Cancer blogger, Nancy Stordahl (@nancyspoint) recommends a consistent blogging schedule if you want to develop a loyal readership. “This takes commitment,” she explains, “which means posting on a regular schedule that works for you. This might be weekly, every other week or monthly. This way readers know what to expect, plus it keeps you focused. I post weekly (usually the same day) because that’s what works for me. Consistency is key.”

In this article, I want to share with you a month’s worth of things to write about. Whether you’re new to blogging and looking for ideas to get started, or you’ve been blogging for a while but your writing has stalled, the following tips are designed to kick-start your writing efforts.  Commit to consistency by writing one blog post a week for the next month with these topic ideas as your guide.

10 Ways to Create a Month’s Worth of Blog Posts

1. Share Facts and Answer Questions for Your Readers

You might like to start by asking your readers what kind of questions they have that you can answer for them.  You could use Instagram, Twitter or Facebook to do this or you could search on a question and answer platform like Quora. On Quora you can ask a question about your topic or simply do a search using your topic keyword to find what people are asking about that topic. Make a list of those questions which you feel you could write about. When you have written a blog post on the topic, go back into Quora and answer a question related to the topic. You can include a link to your post in your answer.

2. Recycle Old Posts

Recycling content simply means taking one piece of content and finding a new way to create content around it. Identify your most popular content through your blog analytics tool. Now brainstorm some ways in which you can take this content and turn into a fresh post.  Can you turn it into a video or audio post? Are there any new research or treatment updates you can add since you first published this post? Can you get creative and create an infographic or develop a downloadable checklist using the original post as a starting point? You’ve already spent time and effort in creating your content, now spend a little more time to maximize that effort.

3. Compile a Glossary of Medical Terms

One of the things I remember most when I was a newly diagnosed patient was how mystifying the world of cancer was for me. I had to learn a whole new language consisting of unknown medical terms and scientific jargon to be able to understand my diagnosis. Make the process less mystifying for newly diagnosed patients by putting together a useful list of medical and scientific terms (as I did with this Clinical Trials Jargon Buster) and publishing it on your blog.

4. Share the Latest Medical Research in Your Disease Area

Have you been to a conference where you learned about new medical research? Or read about the latest research in a medical journal?  Let your readers know about it through your blog by providing a summary of the key findings and translating the information into easy to understand language for other patients.

5. Create a Reader’s Poll

There are several online tools you can use to create a readers’ poll. If you have a WordPress.com site, then you’ve already got Polldaddy polls built in. You can create, manage, and see results for all of your polls directly in your WordPress.com dashboard. If you use a self-hosted WordPress site, install the Polldaddy WordPress.org plugin. Once you’ve collected your poll data, publish a follow-up post with your findings.

6. Write about a Typical Day in Your Life

What’s it like to live with your condition on a day-by-day basis? What insights can you share to help others understand what a typical day is like for you and patients like you? Can you share helpful tips to cope with common everyday difficulties? Do you have advice for how family and friends can help you navigate your illness? As a person with lived experience you are in a unique position to shed light on what it’s like to cope with your illness by writing about it on your blog.

7. Embed Slide-Decks of Your Talks

Have you recently spoken at an event? Did you use slides in your presentation? Did you know you can upload your slide-decks directly to a platform called SlideShare? This is a great way to develop a portfolio of your speaking work and showcase it on your blog by simply inserting the embed code provided by SlideShare.

8. Invite a Guest Blogger to Write For You

Inviting another patient or healthcare professional you admire to write for you, not only expands your blog’s reach and readership, but adds a valuable new perspective to your site. For example, each week, Nancy Stordahl invites a different metastatic breast cancer patient to share their story on her blog for her regular #MetsMonday post.

9. Create Recurring Content

Creating regular recurring content, like Nancy does with #MetsMonday, is another excellent way to keep consistent with your content creation. Another suggestion is to create a round-up post each week – this could be a round-up of the latest research or a link to useful resources and articles you think would be helpful to share with your readers. Pick a day for this and stick to that day each week so readers know what they can consistently expect from you.

10. Plan Posts around Seasons and Events

This final tip is one of the easiest ways to create content on your blog that you can use on a regular basis. For example a post on how to survive the holiday season, or healthy eating during the holidays is a post you can use year after year. Add the dates of awareness days, such as World Cancer Day, to your calendar as a reminder to create content around these events.

Virtual #patientchat Highlights

Community Matters: MD and Patient Authored Tips to Help You Stay Involved

Last week, we hosted our first ever Virtual Empowered #patientchat. The Virtual Empowered #patientchat was a moderated 45-minute conversation conducted online via Zoom and Facebook Live along with a lively discussion on Twitter. Below you will find the highlights from the online events and highlights from the conversation on Twitter.

Virtual #patientchat Highlights

Is Telemedicine a Useful Tool?

“I was experiencing some symptoms of COVID and I made an appointment with my PCP. We went over the symptoms and I tested negative for the antibodies, but I didn’t have to go in at the time when it was crowded.” – Mel

“I have always felt that we have under-utilized telemedicine. There is so much that can be done via a telemedicine visit.” – Dr. Rochester

“One of the best things I’ve seen from telemedicine is for a lot of people with physical ability issues or anything like that, or a really bad migraine or if you have a chronic illness that fluctuates every day. What if you make an appointment in December and it comes up a couple months later and you don’t feel good that day. You can still have the access to your provider and talk through any concerns or even potentially get help for a flare or things like that.” – Alexa

At Wits’ End?

“Be kind to yourself. Extend compassion to others. Find an emotional accountability partner. Write down a list of loved ones whenever you think of them so you remind yourself to check in later.” – Honora

Coping Tools

  • Don’t just zoom. Try online games with your loved ones!
  • Schedule virtual coffee or tea
  • Join a wellness challenge!
  • Take care of yourself

Community Empathy

It is normal to feel anxiety right now. Mel recommends finding the techniques that manage it best for you like doing some daily exercise to get your vitamin D. Stay focused: it’s a marathon not a sprint.

A Timeless Call to Action

“Reach out to others. You can physically distance without sociallydistancing. Pick up the phone, call someone, do a zoom call or facetime or skype, but don’t let these trying times prevent you from staying connected with your community and even from creating a brand new community.” – Dr. Rochester


Top Tweets

Sometimes You Need to Unplug


Enhancing Digital Health Literacy


Stories Are Still Important


Full Chat


 

The Government And Charitable Resources Available To Veterans Diagnosed With Cancer

Each year, over 40,000 veterans are diagnosed with cancer in the US. Many veterans of the Iraq and Afghanistan wars were exposed to a variety of hazardous substances, from depleted uranium to chemical warfare agents. This history of toxic substance exposure has left a legacy of health complications and may explain the worrying increase in cancer rates among veterans in recent years.

Veteran’s Affairs healthcare benefits

For veterans lacking insurance, cancer can be particularly distressing, adding financial worries to the considerable health concerns of a diagnosis. Veterans diagnosed with cancer during or after their military service may be entitled to Department of Veteran’s Affairs (VA) healthcare benefits if they are discharged under any condition other than dishonorable, regardless of the time since active service. VA healthcare benefits will cover health exams as well as specialized inpatient care. Furthermore, these benefits are available regardless of what insurance a veteran has, be it Medicare, Medicaid, private or none at all.

Veteran’s Affairs disability compensation and cancer

To receive maximum disability compensation, a disabled veteran must earn a 100% VA Disability rating. However, because of the way the rating is calculated, this can be very difficult to achieve. Veterans affected by cancer may qualify for VA disability benefits, and in cases where the VA determines the illness is service-related, they may temporarily receive a disability rating of 100% for as long as the cancer is active.

Agent Orange, a herbicide deployed in Vietnam, has been linked to Hodgkin’s lymphoma and leukemia in veterans and civilians exposed to it during the Vietnam war. As a result, veterans deployed to Vietnam may qualify for VA disability benefits under presumptive conditions. Presumptive conditions are cases in which the VA presumes a disability or illness is caused by military service and for which it decides to award benefits.

Non-governmental organizations offering assistance to veterans

Beyond the VA, there are a number of charitable organizations offering assistance to veterans diagnosed with cancer and their families . The Fisher House Foundation offers a no-cost network of comfort homes located near major military and VA medical centers across America to the families of veterans receiving treatment. This is especially important in cases where veterans must travel long distances for treatment at VA or specialist medical centers, allowing their families to be with them every step of the way. For veterans looking for guidance or aid when applying for benefits, Disabled American Veterans (DAV) offers their services free of charge, helping veterans file their claims and providing vehicles for those in need of transport to medical facilities.

The decade following the Iraq and Afghanistan wars saw an unprecedented increase in the number of cancer cases among armed forces veterans. While the VA offers benefits and services to aid veterans living with this disease, in many cases it simply isn’t enough. For veterans in this situation, there exists a strong framework of charitable organizations ready and willing to pick up the slack and aid them in the fight.

Cancer, COVID, and Change

“There’s something to be said for not being a patient,” one of my doctors said.

“It feels so good,” I said during our telemedicine appointment, “to be away from the hospital for eight weeks in a row.” It’s the longest hospital break I’ve had since being diagnosed with cancer last summer. Before mid-March, I’d been to four to ten medical appointments every month. Being a cancer patient felt like a full or half time job. Because of the pandemic, I’m now treated by my oncology team from the comfort of my own home.

I don’t miss shuffling from room to room or floor to floor and sitting in waiting rooms for hours. I love not needing to ask for rides or take cabs or public transportation while my white counts are low. I don’t miss being poked,  prodded, weighed, and measured or having my vital signs documented in hallways while removing my coat, wig, and shoes. I love not having to roll up sleeves for the vials of blood to be drawn or to pull down my pants so the doctor can put a stethoscope to my belly and bowels.

Because of the increased health risks at hospitals, new access to telemedicine, and flexibility around clinical trial protocols, I can see my oncologist, face to face, through Zoom. Questions can be answered ,via email, a text, or a phone call. Clinical trial drugs are overnighted to me.

I enjoy the time and money I’m saving and the convenience of getting all care from home. But I also miss the real-life hugs, handshakes, and high fives that used to come with seeing the clinical team in person.

COVID Challenges

Many cancer patients are losing jobs, homes, loved ones, and health insurance. For those newly diagnosed with cancer, surgery, scans, and treatments must be done all alone. Those in active treatment are often terrified of catching COVID-19 while immunocompromised. Others are afraid hospital visits will expose our family members to COVID.

It’s startling how much hospital protocols and procedures have changed. When I look back or think about what comes next, I worry. I hope the pictures and stories below capture what it’s like to be an oncology patient and how swift and severe the COVID-related changes over the last few months have been and continue to be.

From Person to Patient

My partner drove me to the hospital on the morning of my surgery. We checked in before 6a.m. and waited, with others, in the lobby.

Eventually, we were called up and walked, single file, through halls by someone escorting us to the pre-op area. Each one of us was assigned a bed (pictured) and a nurse (not pictured). The photo is of the pre-op area.

My partner got to visit me before surgery. He was there when the surgeon, nurses, fellows, and anesthesiology came to prepare me for surgery.

If surgery were scheduled today, my partner wouldn’t be able to stay with me.

The Shock of a Post-Op Diagnosis

This is me in post-op. My partner took this photo on his phone and was able to share it with my family and friends to let them know I made it through surgery. They were worried because it went hours longer than expected.

In the photo, I’m high as a kite and happy to be alive. I’ve just downed the iced coffee my partner snuck in (as planned and with permission from the nurse). In the photo, I am still in shock that my surgery was five hours long, it’s afternoon, and that cancer was found. I don’t yet know how serious my diagnosis will be. That will come twelve hours after surgery when the surgeon explains my cyst was actually a cantaloupe-sized cancerous tumor, aggressive, advanced, and usually chronic. Mercifully, my partner is with me as she explains that she had to do a total hysterectomy, removing ovaries, fallopian tubes, lymph nodes, and my omentum and lays out the timeline for chemotherapy.

My partner held my hand and crawled into my bed to hold me while I sobbed. But he provided far more than essential emotional support. He helped me stand and keep my balance, helped me get to my first trip to and from the restroom. He was there to advocate for me when I dozed off and to get the nurse when my call button went unanswered. He was the one who provided my loved ones with updates. He was the one who snuck my favorite health foods to help “wake up” my digestion enough to allow me to be discharged after one day.

It’s hard to imagine what that traumatic and challenging day would have been without him. I can’t imagine recovering from major surgery and receiving such devastating news alone but it’s what many diagnosed with cancer during COVID now endure.

At-Home Adjusting & Recovery:

Going home after surgery is comforting and scary. My right leg was giving out from under me because my obturator nerve “got heat” during my surgery. I had trouble standing in the shower or lifting my right leg onto the bed or into a car. I had extensive swelling and bruising on my right side and pelvic area and had a bit of a reaction to the bandage tape. I didn’t know what was normal. And after a phone call to the hospital, I was asked to come back in for a check-up.

Today, I’d either have had a telemedicine appointment or need to decide if an in-person visit with a medical professional is worth possible exposure to COVID. These are the types of decisions we are all facing but it’s especially scary when one is already vulnerable and fighting for life.

Early Treatment: Chemo Buddies are Not Optional

Getting chemotherapy infusions is time-consuming, scary, and intense. Everyone reacts differently to the many drugs given with chemotherapy (such as Benadryl, steroids, Pepcid, and anti nausea drugs). Everyone reacts differently to the chemotherapy, marked hazardous,  that require the nurse to wear gloves, masks, and protective clothing to prevent contact in case of accidental spills. Some drugs make you sleepy, and parts of your body numb. Others make you feel amped, wired, and agitated.

Some cause nauseous, headaches, or allergic reactions, immediately and others not for days or weeks.

Having a chemo-buddy like Beth was a huge help. She was the one who asked for window seats in the infusion center, who made sure I got warm blankets. She massaged my feet and reminded me to listen to guided imagery. She sat with me in waiting rooms as we waited for my labs to come back to make sure my white and red blood counts weren’t too low, my liver counts not too high, and that the chemo was making my tumor marker scores go down.

She was the one who touched the elevator buttons for me, the one who walked me to the car and handed me off to my fiancé at the end of the day. She was the one who got me water, coffee, or snacks.

I felt safer whenever I had a chemo buddy with me and Beth would also take notes and make sure I didn’t skip any of my questions just because the oncologist seemed in a hurry.

Beth was not only a source of support but provided an extra pair of hands to plug in my iPhone, to hold my bags, food, or books. She was the person I could share tears, laughs, and heart to hearts with. She listened as I worried about my daughter, as I struggled to balance work and parenting.

She was there to support me as I talked endlessly about healthy eating, fasting, supplements, and complementary medicine. But the greatest comfort of all was knowing she would be there if passed out, fell, or had an allergic reaction to all the treatment drugs. At my last treatment, I was alone and Beth at home. It was hard.

In-Between Hospital Visits: Public Services & Personal Support

 

Social distancing during treatment is hard even for introverts like me who need a lot of alone time. When physically weak, short visits with loved ones who bring food, hugs, and gifts are life-affirming and life-changing.

Those who show up do so for cancer patients as well as our families. They help us to take care of our kids, partners, pets, plants, and housework. They help us manage as we face fear and loss, whether losing jobs or body parts, or hair and having few or no visits is hard. Today, barber shops where we might get our heads shaved are closed.

The wig shops and stores we go to for hats and head coverings are often closed.

We can’t go out to eat with loved ones, or do yoga on good days. We can’t have parties for our loved ones to create normalcy or new rituals. We can no longer go out in the public either. We can’t do things such as sitting alone writing in a journal and drinking a smoothie when swallowing food is too hard.

We can’t travel to remind ourselves there is still beauty and magic in the world and to enjoy our loved ones and lives as much as possible.

These are not all small things or luxuries in coping with the brutal effects of cancer treatment and chemotherapy. They can change the cancer and recovery experience and all that helps keep us strong. 

Later Treatment

We need others when we are sick. We might need help standing, walking, or eating. We might need rides, treatments, or blood or platelet transfusions. We might need help articulating symptoms and side effects. To have fewer in-person visits when so medically vulnerable can be anxiety-producing.

We also have less in-person celebrations with our clinical teams when we finish a line of chemotherapy or have a cancer-free scan. We no longer have informal pet therapy either with the cheerful and cuddly animals of friends, family, and neighbors.

I can’t imagine going to chemo alone, depleted, and with low white counts.

The increased risks, vulnerabilities, and lack of human company and tactile comforts feels indescribably epic.

Maintenance Treatment & Clinical Trials

My immunotherapy infusions (or placebo) have been put on hold for the past two cycles. I asked if I could remain in my clinical trial if I refused to come to the hospital for treatment until the risk of getting COVID is decreased. Luckily, I’ve been allowed to stay home. Clinical trial protocols, in general, are much more flexible as a result of the pandemic. My medication (or placebo pills) are mailed to me. Before March, in-person prescription filling was required and always took hours.

However, I’ve been weighing what I’ll do if I have to weigh virus-related risks against the possible benefits of clinical trial treatment. If I’m required to be treated at the hospital I may drop out of the trial. This is one of the many difficult decisions oncology patients often face but it’s made more complicated because of the coronavirus. .

Have Some Changes Been for the Good?

The losses, challenges, and changes are worrisome and real. That said, not all the COVID-related changes for oncology patients are bad. The whole world is wearing masks, staying home, socially distancing, and worrying about health, wellness, death, and dying.

Instead of being stared at when I wear a mask, I’m now in good company, because much of the world is doing the same. Many of us are consumed with health issues and worried about health, mortality, and immune functioning.

To be reminded, once again, that health and life aren’t guaranteed to anyone, that we are all facing mortality, and must appreciate every day we have, is strangely comforting. While I’m reminded of our collective vulnerability, to hear health concerns, risks, and challenges confronted as the world and nation’s collective concern is a reminder that none of us are being personally picked on for failing at being human, we are just, in the end, all excruciatingly fragile and mortal.

“I feel like I’ve been slow-dancing with death since last summer but now I feel less alone,” I told my friend Kathy. “It’s like others have joined you on the dance floor,” Kathy said. “Yes,” I said, which once again makes me feel like a person rather than a patient and there’s something to be said about not being a patient….


Resource Links:

  1. The National Cancer Institute  guide: Coronavirus: What People with Cancer Should Know.
  2. American College of Surgeons: (ACS) Guidelines for Triage and Management of Elective Cancer Surgery Cases During the Acute and Recovery Phases of Coronavirus Disease 2019 (COVID-19) Pandemic
  3. Sample of patient visitation changes hospitals have implemented from Mass General Hospital.
  4. Telehealth at Dana Farber.
  5. Coronavirus (COVID-19) Update: FDA Issues Guidance for Conducting Clinical Trials

Diversity in Clinical Trials Benefits Everyone

The COVID-19 pandemic has been an unprecedented and collective experience for us all. Sadly, the pandemic has affected some more than others. This health crisis highlights both the pre-existing inequities in our healthcare system and the populations that experience such ramifications. Racial and ethnic minority groups (REMGs) will make up the majority of the population in the near future. Over the next two decades, the US population is estimated to make this major demographic shift. This is problematic because present inequities render REMGs disproportionately vulnerable and sick.

It is critical that REMGs are included in clinical trials because, as the broader population, their data will affect the outcome of precision medicine for everyone. Currently, REMGs do not have equitable access to general health care, let alone clinical trials. We need broader genomic data for understanding and curing existing diseases. Collective action is needed so future generations avoid the same health disparities.

Clinical Trials Awareness Needs to Extend Beyond an Awareness Week

Clinical trials awareness needs to extend beyond an awareness week or event.  Diverse Health Hub had the opportunity to speak with Dr. Gary Puckrein, president of the National Minority Quality Forum, to learn more about the importance of diversity in clinical trials. In our one-on-one, we learn what’s at stake and what solutions we can act on collectively.

Dr. Puckrein shares three critical considerations. First, we must identify the barriers that prevent diverse clinical trial participation. Second, he describes the bleak outlook if we do not increase diversity in clinical trials. Lastly, we discuss the path to empowerment that creates solutions to these problems.

Historically, clinical trials have been flawed. Different types of barriers prevent diverse participation. For example, in the 1990s, women were not recruited into trials on the assumption that they would react to medications the same way men did:

“Back in the 1990’s we didn’t recruit women into clinical trials and so there was a big struggle to make sure that clinical trials were diverse by gender. Back then the assumption was if you have a bunch of men in the trial, women would react the same way that men do to the medications or the disease pathology would be the same and so, why would you need to have women in trials?”

Likewise, during that time, REMG participation rates were low, around 3-5%. Trust is an essential barrier, with a negative historical context. A poignant example of this for African Americans is the Tuskegee experiment. Dr. Puckrein explains:

“In the African-American community, there are fears that came out of the Tuskegee experiment where therapy was withheld from African-Americans who were suffering from syphilis for no particular reason and it has an awful impact on their lives and so, that’s a deep scar in the African-American community about participating in clinical trials.”

Mistrust in Clinical Trials is Systemic 

Native American and Hispanic American communities have their own stories of mistrust in clinical trials.

The preexisting inequities in our healthcare system is another barrier, and a systemic one. Statistically, most REMGs don’t have access to basic healthcare, let alone resources to participate in clinical trials. Dr. Puckrein shares staggering data, “before the Affordable Care Act about 48% of African-Americans had no health insurance, about 54% of Hispanics had no health insurance.”

Furthermore, someone may be considered ineligible for a clinical trial if they already have existing health conditions. According to Dr. Puckrein, “REMGs were disproportionately excluded from some clinical trials based on either prior cancers, comorbidities, other things that may not have clinical implications.”

Outcome Risks If Barriers Aren’t Eliminated?

Without diversity in clinical trials, we risk collecting homogenized data which does not include the larger genomic context necessary to understand and improve precision medicine for everyone. It’s important that we make clinical trials all-inclusive, as Dr. Puckrein points out:

“What we’re finding is that we need highly targeted medicine, each individual is different. It has nothing to do with race or anything like that – it’s that everybody’s biology is different.”

The stakes are high because the future of our health depends on inclusivity right now. Clinical trials awareness needs to extend beyond a month of awareness. We don’t want today’s diseases to adversely affect generations to come. What then is a viable solution to this dilemma?

How Can We Learn and Take Action?

First. Get informed. Understand the larger historical context and intentions of clinical trials.

Second. Share this information by creating learning communities. Dr. Puckrein gives an example:

“If you bring physicians and patient advocacy groups, the policy makers and others around the table, you can solve problems like that and solve them quickly and inform the healthcare system so it’s interactive, it’s constantly learning. And so, we encourage people to build those – make them data driven. Use the data to help guide you on what interventions will work and how you’ll get the best possible outcome for patients.”

Third. Act. If you want to explore options in your treatment, seek out resources that embrace diversity in clinical trials. The “All of Us” Program is a public health initiative designed to remove the barriers that prevent inclusive access. As Dr. Puckrein highlights,

“The “All of Us” program is really designed to address that problem, to take populations that have not historically been in clinical trials — and now we include senior populations in that list as well — and make sure that we’re gaining signs in research about those populations. And so, the “All of Us” program is really designed to fill a big scientific gap in our knowledge.”

Furthermore, it is crucial to engage early with community leaders and grassroots organizations that resonate with underrepresented patients, and to encourage their participation in the critical stages of research.

Seeking knowledge, joining a community of advocates, and taking collective action is key to making a difference for all of us as we journey the path to empowerment.


 

ASCO Goes Virtual 2020

The American Society of Clinical Oncology (ASCO) is the preeminent professional organization for oncologists. Their annual meeting usually takes place in Chicago, IL, but this year it goes virtual! Take a look at the infographic below to learn how to attend virtually.

Attend ASCO Online

 

 

Tips for Patients on Staying Connected Despite Physical Distancing

We are in a crazy time right now, and no one has experienced anything like it…except for cancer patients. As high-risk patients, we know what it’s like to distance ourselves from others and practice good hygiene. I know I do.

As a thyroid cancer patient, I underwent radioactive iodine treatment, where I became radioactive. I was living with my family at the time, and I had to have my own room and bathroom. No family member could come within a certain distance from me. Not even my dog. I remember them leaving meals outside my door, and texting a parent or sibling when I needed something. It was strange, yes, but I knew it was what I had to do to keep myself and my family safe.

The same thing is happening right now. We’re told to stay at least 6 feet apart from people at all times. Performing normal tasks such as going to the grocery store, a friend’s house, and even work are no longer possible. It creates a sense of grief in all of us, as we feel lost without our normalcy. Instead, we are living a “new normal,” something that cancer patients have already been long accustomed to. It’s as if the rest of the world gets to see how we live, how we feel.

We may have to physically distance ourselves, but staying connected is still possible. And it is in these moments that we can learn how to cultivate strong relationships. We live in a world with an abundance of technology. We have the ability to call, text, email, video chat, Tweet, etc. Had this pandemic happened a long time ago, none of this would’ve been possible. Social distancing would be real.

To take advantage of the opportunities that are currently presented to us, I’d like to highlight the ways in which we can stay connected:

(NEW!) Virtual Empowered #PatientChat | Friday, May 15 @ 1PM EDT

The Virtual Empowered #PatientChat is a moderated conversation conducted online via Zoom and Facebook Live. This support group will feature an expert moderator, a panel of passionate patient advocates and care partners, and other people seeking a consistent friendly community. Learn more and register!

 Support groups via Zoom

  • Our Odyssey
  • Smith Center – for AYA patients (located in the Washington, D.C. area but is open to patients all over)
  • Look for ones from specific cancer orgs (ex. Thyca, Inc.)

Facebook support groups

These can be found for cancers from the general (ex. breast cancer) to the specific (ex. breast cancer with BRCA1 mutation)

Tweet chats

Search for these using the hashtag as seen below. A few of my favorites include:

  • #patientchat
  • #ThyCaTalk
  • #bcsm
  • #HealtheVoicesChat
  • #medtwitter
  • #HCLDR