Tag Archive for: empowered patients

Five Ways the PEN Empowerment Lead Program Can Support Your Cancer Journey

Our Empowerment Lead program is here to support patients and families around important topics and to provide navigation for the path to empowerment. Our Empowerment Leads are highly passionate empowerment ambassadors volunteering from around the U.S., engaging with the PEN network of cancer patients and care partners, and serving as a direct channel of empowerment.  

1. Utilize the PEN Text-Line

By texting EMPOWER to +1-833-213-6657, you can meet someone with your same condition  and  receive personalized support from our Empowerment Leads. Whether you’re a cancer patient, or a  friend or loved one of a cancer patient, PEN’s Empowerment Leads will be here for you at every step of your journey.

2. Watch PEN Videos

Taking a proactive role in your well-being as a patient is of utmost importance for optimal health outcomes. And PEN videos are a trusted source when seeking out information from cancer experts, patients, care partners, and PEN Empowerment Leads. Whether you’re a newly diagnosed patient, care partner, long-time cancer patient, or other concerned patient advocate, PEN videos provide a valuable way to learn about cancer patient stories, testing information, questions to ask your cancer specialist, how to support and be supported as a care partner, ensuring that your patient voice is heard, and more.

3. Read PEN Blogs

Our PEN blogs are a rich source of support information on a wide range of topics for cancer patients and care partners. The blogs serve as another way to gain knowledge and advice for navigating and coping with your cancer journey. Some recent topics have included mental  health advice, financial support resources, nutrition and exercise tips, COVID-19 vaccine guidelines, patient stories, caregiver advice, genetic testing, and cancer news updates.

4. Download and Use Our Activity Guides

Initiated as a patient and care partner tool at the beginning of the COVID-19 pandemic, our PEN-Powered Activity Guides continue as a way to stay connected and to relieve stress during your cancer journey. Packed with information and support resources, the Activity Guides provide content including clinical trial information and experiences, patient stories and lessons learned, advice from care partners, healthy recipes, music playlists, coloring pages, and more. If you’re a busy cancer patient or care partner, the Activity Guides are easy to print to take with  you to read during travel and waiting room time for cancer care appointments.

5. Learn About Our PEN Empowerment Leads

If you don’t have time to watch a video or to read a blog right away, you can browse our list of PEN Empowerment Leads. You can easily see the community that each Empowerment Lead serves  and read a short bio about their experience as a cancer patient or care partner.

By taking advantage of our PEN Empowerment Lead resources, cancer patients and care partners can gain knowledge and confidence to navigate their own cancer journeys.

Transportation Solutions for People With Cancer Who Can’t Drive

For people with cancer, transportation can be a major issue. While everyday trips like going to the store or running errands can be difficult enough, transportation becomes a bigger issue when you have to get to your medical appointments and treatment solutions.

Not having access to adequate transportation can hinder your recovery and add stress, making it even more difficult to stay strong and maintain a positive attitude throughout treatment.

Thankfully, even if you don’t have a vehicle or aren’t able to drive yourself, there are resources you can reach out to and options to consider when you need transportation. Your quality of care shouldn’t depend on whether you can drive. Let’s cover a few of those solutions, so you’ll never have to miss an important appointment or experience a lesser quality of life.

Why You Shouldn’t Drive

As many as 30% of people with cancer skip their appointments regularly. One of the biggest reasons why is a lack of transportation. That doesn’t necessarily mean you don’t have access to a vehicle or don’t know how to drive. But, your diagnosis and/or treatment could make it difficult or dangerous to get behind the wheel on your own, and you may be hesitant to ask someone else for help. If you’re going through radiotherapy or chemotherapy, it’s not uncommon to experience symptoms like

  • Fatigue
  • Nausea
  • Vomiting
  • Impaired motor skills
  • Difficulty concentrating

Obviously, it’s not a good idea to get behind the wheel if you’re struggling with any of those problems. Treatment impacts everyone differently, so until you know which side effects impact you the most, it’s a good rule of thumb to have someone else drive you to and from your appointments.

Even certain medications can impair your driving ability, so you might need to rely on someone to help you with everyday errands, too. If you’ve had “near misses”, multiple accidents, or multiple traffic warnings or citations, it’s a good indicator that it’s time to stop driving yourself until you’re off certain medications or until you’re able to build your physical and mental strength.

Reach Out to Resources

One of the best ways to find transportation to your appointments is by utilizing resources specifically designed for people with cancer. The American Cancer Society’s Road to Recovery program is one of the most popular transportation solutions. It offers free transportation to and from appointments, and all you need to do is visit their website and provide information about your location and schedule.

If you’re not able to find a Road to Recovery driver near you, consider reaching out to local church groups or the hospital you use for your treatment. Often, they will have volunteers or special services designed to provide transportation for those in need. While they might not be limited to people with cancer, as long as they are a trusted organization and are willing to work with your schedule, these are great resources to keep in mind.

Finally, reach out to your insurance company. Some companies reimburse people in need for any fares they might have to pay on public transportation, while others have programs that provide rides to their clients if there are no other options.

Utilize Technology

We haven’t officially perfected self-driving vehicles yet, but it’s coming! Learning more about the technological advancements in the auto industry can help you look for better safety features in your next vehicle, including things like

  • Lane assist
  • Blind spot detection
  • Parking assist

Some vehicles will even brake automatically if they sense a potential collision, which can be a huge help if you’re having trouble focusing or you’re tired after a treatment. Using technology to make driving safer and easier for you can build your confidence if you have no other choice but to transport yourself. However, technology isn’t perfect and there are still risks involved. If possible, it’s still safer to have someone else transport you while you’re undergoing treatment.

To that end, you can use ridesharing apps to help you get to your appointments. Uber created a dashboard specific to healthcare organizations that allows them to schedule car rides for patients. UberHealth gives providers the opportunity to coordinate rides for patients who might otherwise not have access to transportation. The Patient Empowerment Network’s digital sherpa™ program teaches cancer patients tech skills, including how to use ridesharing apps like Uber and Lyft. Thus, patients using the program always have access to transportation.

If you truly have no other transportation options, you can use technology to your advantage by utilizing telehealth. While some appointments will always need to be in person, including radiotherapy or chemotherapy treatments, you can practice better self-management and improve remote monitoring by connecting with your doctor online. Many physicians have their own digital portals, but even a video call can ensure you and your medical team are on the same page when it comes to your treatment.

Transportation difficulties should never keep you from getting the treatment you need. Keep these solutions in mind to keep yourself safe as you drive to and from appointments, and consider reaching out to family members or friends who might be able to help, too. You’re never going to burden someone with your request, and a lack of transportation shouldn’t be a reason to skip out on the treatments you need to beat the disease.

Patient Advocacy: 6 Tips for Making A Visual Impact on Social Media

When it comes to sharing your advocacy message visual impact is a key factor in creating more visibility for your cause and increasing online engagement. In an increasingly crowded digital landscape, where our minds are drawn more readily to content that catches our eye, images can break through the online content clutter to quickly communicate your message.

It stands to reason that the visuals you create and share online should set the right professional tone for your advocacy activities. To help you do this, I’ve put together a list of six tips to increase the visual impact of your social media posts, alongside a list of tools to help you create more professional-looking graphics.

1. Upload A High-Resolution Image

Upload larger high-resolution images to social media. When an image file is too small, it will stretch, resulting in poor image quality and pixelation. Pixelated images appear unprofessional and reduce the likelihood they will be shared by others.

2. Choose Clear Typography

Typography is made up of elements such as font type and size, kerning (white space between individual characters or letters), and tracking and spacing. Typography is important when it comes to making your content more understandable to your reader. Visit Google Fonts directory, a free tool to help you choose the best font for your graphic design.

www.fontsgoogle.com

3. Pick The Right Colors

Color design is an essential design element. Ask yourself if your color choice is easy on the eye. If you use a combination of colors do they complement each other? Complementary colors are those that are placed opposite to each other on the color wheel.

Keep your color palette simple. Don’t be tempted to use too many colors in your designs. Pay attention to the hue and saturation values of the chosen colors – lightening or darkening tones to convey more warmth or strength as needed.

Consider how color can elicit emotion, which can result in either negative or positive feelings. A vibrant red, for example, makes a design element more stimulating and is good for drawing attention, such as for a call to action button. Red, on the other hand, can have more negative connotations – red for danger. It’s also a difficult color to see, especially for those who are visually impaired. If you choose to use red in your designs do so sparingly and intentionally.

4. Make Good Use of White Space

This tip is all about learning to embrace white space in your design template. Make use of grids when laying out your design. Layout grids help designers position text and images in a way that looks coherent and easy to follow.

5. Adapt Your Images To Suit Each Social Platform

No one post fits every platform. Each social network has its own dimensions and your design needs to be adapted to fit. An image creation tool like Canva makes it super easy to create your image according to the dimensions of your chosen social channel.

6. Avoid Using Stock Photos

The best images to create connections online are authentic images. Try as much as possible to use your own photos and images in your design. That’s not to say you can’t ever use stock images, but be mindful of not turning to over-used, cheesy stock images.

Ten Tools To Create Professional Looking Graphics

1. A Color Story

This app lets you choose from a large selection of filters to make your photos stand out. Instead of filtering your photos to look all the same, A Color Story filters aim to enhance the color you’ve chosen in your composition. One very helpful feature of the app is that it lets you save your editing steps to reuse for future edits, which will save you time when batch-editing photos.

Acolorstory.com

2. BeFunky

There is so much you can do with this tool to enhance your visual assets, including creating collages, adding “one-click” photo effects (there are over 300 photo effects and filters to choose from), and an array of graphics (e.g. speech bubbles). The basic account is free to use and provides users with access to a library of 125 digital effects.

Befunky.com

3. Canva

Whether you want a Twitter post or Facebook profile picture, you can create them quickly using Canva’s drag and drop editor. Select from a number of pre-set designs, or create something from scratch.

Canva.com

4. Easil

Easil is an online graphic design tool with pre-made templates that you can adapt in seconds with simple drag-and-drop tools. It’s especially useful for Instagram and Facebook stories.

easil.com

5. Infogram

Infographics are a great way to present your data in a creative way and this free design tool makes it super simple to put together your own infographics.

Infogram.com

6. Life of Pix

Life of Pix offers free, high-quality images that are available for personal and commercial use. Each comes with a helpful color palette so you can plan your visuals accordingly.

Lifeofpix.com

7. Quotes Cover

Quotes Cover turns quotes or short text into images for social media and high-resolution images for posters or other print designs. It’s so simple to use. Simply enter your quote or text and then choose your preferred design elements, such as font, shadow effect, and color.

QuotesCover.com

8. Ripl

A mobile app that lets you create short animated videos with professionally designed templates. Ripl is integrated with the major social media platforms, so sharing your final video is easy. Once you’ve connected your social profiles to Ripl, you can post directly to Facebook, Facebook groups, YouTube, LinkedIn, and more. You can export your videos if you want to use them outside of your social media platforms.

Ripl.com

9. Typito

Typito allows you to make video content using its drag and drop tool, and add images, music and captions. Once you create your video you can export it into several formats, including landscape, square, etc. — giving you perfectly cropped videos for the platforms you use the most.

Typito.com

10. Unsplash

Unsplash gives you access to a bank of 50,000+ free-to-use photos. You can subscribe to receive ten new images every ten days directly into your inbox.

Here’s to your social media success!

The CDC is Joining the Patient Empowerment Movement

April 15, 2021 Update:
The CDC Foundation has launched the Empowered Health Cancer – Free Challenge! This competition calls for new, revolutionary ideas and solutions that meet people where they are and empower them to live longer and healthier lives, cancer-free. If you have an idea to create better care for cancer patients, enter today for a chance to win $5,000. Learn more here.


Inspired by the question: “Could the number of cancer deaths be lowered by helping people take a more active role in their health and health care?”the Centers for Disease Control and Prevention (CDC) and the CDC Foundation have launched an initiative which will further elevate the cancer patient empowerment movement: EmPOWERed Health.  

Complimentary to our mission and programs at the Patient Empowerment Network (PEN)the CDC’s EmPOWERed Health initiative aims to educate and inspire people to be more proactive in their health and in the prevention and treatment of cancer.  

To kick off EmPOWERed Health, the CDC Foundation will host a virtual hackathon in the spring of 2021 that will seek innovative ideas and bold approaches from a variety of people and organizations to generate ideas and potential solutions to some of the most difficult challenges in health and well-being. 

To learn more, visit https://empoweredhealth.org/ and follow #WeAreEmpoweredHealth on social media. 

The Patient Empowerment Network community is excited to have the CDC team’s talents on this vitally important effort to support cancer patients and care partners in achieving the best possible treatment outcomes 

How to Apply Your Empowerment Skills to Your Health Journey #patientchat Highlights

Last week, we hosted our third 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

Replay

How to Apply Your Empowerment to Your Health Journey from Patient Empowerment Network on Vimeo.

Panel

Top Tweets

What are some frustrations you are dealing with right now?


What is the biggest hurdle you’ve had to overcome in your health journey?


What are your go-to trusted resources and how did you find them?


Full Tweetchat


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

Patient Empowerment Revisited: What Does It Truly Mean To Patients?

Language is constantly evolving in our everyday lives. This is also true of the language we use to describe patienthood. The words we use color how we view our world and how the world perceives us as patients. 

‘Empowerment’ is one of those words frequently attached to patients.  The term is most often used to emphasize the value of having patients assert greater control over their health care.

In a previous post, I set out to explore what it means to be an empowered patient from the perspective of patients themselves. I outlined seven essential facilitators of patient empowerment, from access to information, to health and digital literacy.  Now, two years later, I want to revisit the theme of patient empowerment to investigate what, if anything, has changed in the interim. 

Is patient empowerment still a concept that resonates with patients? 

Reaching out to my online network of patient advocates I received an overwhelming response to this question.  The following quotes, which I’ve synthesised around the most common themes, demonstrate a rich source of insight. Some of the responses you may find surprising as they offer a new perspective on the evolving nature of what it is to be a patient in today’s connected world. Others I feel sure will resonate. Take some time to reflect on what it means to you to be engaged, empowered and enabled in your own care and that of your loved ones. As always feel free to share your thoughts on this topic with the wider community via PEN’s social media channels. 

7 Themes Related To Patient Empowerment

  1. Agency, self advocacy and control
  2. Information, choices and shared decision making
  3. Partnership and a team based approach to patient care
  4. Respect, understanding and compassion
  5. Peer to peer empowerment
  6. Is ‘empowerment’ the right term to use?
  7. Empowerment requires a systemic approach

As there is so much to cover across this topic I’ve split the discussion into two parts. In this first part we will look at Themes 1 – 4. 

Theme 1. Agency, self advocacy and control

On your health journey, care is the vehicle – why not take the wheel?” – Darren Myles (@DRMJunior).

The first theme to emerge centers around a sense of self-advocacy and taking ownership of our own care. Certified Cancer Coach and Executive Director of Emerald Heart Cancer Foundation, Elyn Jacobs (@elynjacobs) considers empowerment as something that is “essential to successfully navigate the cancer journey. As an empowered individual, you can take the path of action and self-advocacy.”

Laurie Reed (@lreedsbooks) also believes being “empowered means recognizing that you have the ability and the right to act on your own behalf. Empowered means taking ownership of the power to effect change for your health and how healthcare is delivered.”

Brain Cancer Babe (@braincancerbabe) sees empowerment “ as taking control for yourself and of yourself.”

Liz Johnson (@wired4story) who calls herself “a career soldier of cancer”,  views the ability to “have some control in dealing with a disease that is completely beyond my control” as essential to her survival. “I’m the coach of my healthcare team (and policy makers and researchers) And all that goes into my survival,” she says. 

Lily Collison (@lilycollison), the mother of a son with Cerebral Palsy (CP), says that taking a more active role in the management of their condition, pushes patients beyond “being recipients of care.” 

Doing so is a proactive move, a term favoured by two-times breast cancer survivor, Georgina Tankard (@flowersorcakes) and Victoria (@terrortoria), founder of the Younger Breast Cancer Network (@YBCN_UK). 

“In the past, perhaps patients were expected to do as they were told. Nowadays with so many more options and so much information, patients can reasonably play a key role in decisions regarding their care,“ points out MS patient, Conor Kerley (@conorkerley). 

Theme 2. Information, choices and shared decision making

“Empowerment is having choices and being seen as the human at the centre of your care.” – Julia (@BCCWW).

Choice emerges as another central theme related to agency and control.  “Choice gives us that feeling of empowerment, “ says Elyn Jacobs, “it allows us to regain the much-needed control we somehow lost when we heard “You have cancer.” If you do not know your options, you do not have any. Empowerment comes from knowing your options, and obtaining the necessary information is critical to make the right choices for you, and for your cancer.”

As Elyn highlights, choice is informed by access to good, reliable information. In the words of cancer patient, Chris Lewis (@christheeagle1) “I need the information so that I can make informed judgments about my life.” 

How can patients be empowered if they don’t understand their condition?” asks Lily, who was amazed to read that a “2016 survey of 1,214 parents and caregivers of children with CP found that they judged available medical information to be inadequate to guide their decision-making. Another piece of research found that the greatest area of unmet need reported by young adults with CP was information.”

Having knowledge is one thing, but it’s the ability to act upon that information that is a key driver of empowerment. To quote Conor, “knowledge is power but only if that knowledge is acted upon.” 

For that to happen, the right environment needs to be facilitated around the patient. This leads us onto our next theme. 

Theme 3. Partnership and a team based approach to patient care

“Whether it’s called empowerment or involvement, the patient needs to feel they are part of the team”  – Noreen (@hiberniaroots).

Many spoke about the importance of a team-based, partnership approach to their care. As Stage IV TNBC patient advocate, Janice Cowden (@JaniceTNBCmets) explains, “I feel empowered through knowledge about my disease, as well as experiencing a team approach, or partnership, with my oncologist in planning my care.”

For caregiver, Wendy Morton (@wendyjanemorton) it’s important that “there is a partnership between ourselves and the care team. Also a genuine adherence to shared and thoughtful decision-making.”

In this team-based approach, patients still rely on their healthcare providers to actively engage with them.   “It’s still very much up to our doctors to let us know what types of options are out there and include us in decisions about how to get there,” emphasizes metastatic breast cancer patient, Meredith Kuiik  (@MeredithKulik).

For Susan Rudick (@susanruddick1), “the word isn’t as important as the patient being engaged and knowledgeable and most importantly being an integral member of the healthcare team when possible.”

Theme 4. Respect, understanding and compassion

“As a patient it’s a matter of LISTENING to us. Our voices are the power we have. What’s wrong doesn’t always show up in a diagnostic test or a scan. It’s our entire self – physical, emotional, psychological and the voice of the patient  is our empowerment” – Ilene Kaminsky (@ilenealizah).

Achieving this approach requires a willingness on the part of healthcare providers to create a space in which patients can ask questions and feel they are being heard on a human level.

In the words of breast cancer survivor Jen Douglas (@MMEJendouglas), it’s not just about understanding the diagnosis, but also having the opportunity “to ask questions and having providers who will take my concerns seriously.”

Metastatic breast cancer patient, Keillie (@LehrKellie) agrees. “Patient empowerment means I can ask questions to my oncologist and she will listen and discuss what I am asking. When I tell her of a side effect, she believes me even if it is not on the list of top side effects of that chemotherapy drug.”

Nancy Seibel (@nancylseibel) sums it up by saying, “I think it’s about respect, dignity and compassion on the part of healthcare professionals and patients. I can’t express in a single tweet how routine hospital and medical practices can humiliate and challenge one’s sense of self as a human worthy of respect.”  

As Elyn points out, “empowerment is hindered when a doctor does not respect the patient’s right to be part of the decision making or instills fear to obtain compliance. You are not just a patient, someone who is expected to passively accept the treatment plan being offered; you are a person, a person with choices.”

Being respected in this way has a circular effect, as Conor demonstrates by saying, “Personally, I believe that as I educated myself and became more empowered, that the attitude of my healthcare team towards me as a young adult changed and I was given more respect. This led to more shared decisions regarding my care and in turn led to me becoming more confident and feeling more empowered!”

It’s important to remember, in the words of Victoria, that “not every patient is the same and clinicians should adapt depending on an individual’s needs.” Patient advocate Barbara Jacoby (@letlifehappen) cautions that we mustn’t forget the cohort of patients who lack the knowledge and skills to become more informed in their care.  “I believe that it then becomes incumbent upon the medical team members to take the time to share with the patient and their caregiver, or other trusted person who can accompany them to their appointments, to explain proposed treatments and options and why such a course is considered to be the best for this individual person,” says Barbara. “Even if the person does not seem to want to be vested in their own decisions, the respect that the patient is given by the doctor builds a level of trust and confidence. This allows the patient to understand that they really matter and are seen as something more than another disease that needs to be treated. Knowing that you matter as a person will enhance the doctor/patient relationship and this automatically empowers the person to want to do their best.”

To conclude Part 1 of this discussion on patient empowerment I want to leave the final word to cancer patient advocate (@GraceCordovano).

Patient empowerment is often framed in the context of:

  1. Activating an individual patient, to essentially change their behavior to better themselves
  2. The doctor-patient relationship, with specific actions that could be done or incorporated to strengthen the interactions, trust, and clinical encounters.

A person’s health and pursuit of their best life with a diagnosis is so much bigger than these 2 traditionally referenced settings. Patients need to also be best supported to hack the health care ecosystem, to navigate its many silos and fragmented workflows, and to exceed the barriers that stand in the way of patients getting the care and resources they need to live their best life where they are.”

Join me for Part 2 of this discussion, where we will take a closer look at the role of peer-to-peer networks in building communities of information and support. I will also be asking if “empowerment” is an outdated concept.  Should we even be using the term in our discussions?   Join me for more answers to this question and further rich insights in Part 2. 

Asking the Right Questions at the Right Time #patientchat Highlights

Last week, we hosted an Empowered #patientchat titled “Asking the Right Questions at the Right Time: Navigating Your Path to Empowerment”. Below you will find the top tweets and the full transcript from the conversation on Twitter.

Top Tweets

Your Goals Matter


The Importance of Self-Advocacy and Support


Full Chat

Best Practices for Sharing Your Patient Story #patientchat Highlights

Last week, we hosted an Empowered #patientchat titled “Best Practices for Sharing Your Patient Story” with special guest The Patient Story (@Patient_Story). Below you will find the top tweets and the full transcript from the conversation on Twitter.

Top Tweets

Sharing Your Story Can Help Others


A Free Public Speaking Toolkit


Don’t Give Weight to Other People’s Thoughts


Full Chat

Building Resilience and Boosting Immunity #patientchat Highlights

Last week, we hosted our second 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

Panel

“We can’t talk about frustrations without talking about resilience because that’s really how we manage these frustrations, how we bounce back, how we maintain our mental health and our physical health during these difficult times”

– Dr. Rochester

What is Resilience?

“Resilience really is about coming home to ourselves, to our center. We want to accept ourselves where we are, shine a light of awareness and sensitivity on ourselves with tenderness and with love. That’s what mindfulness can do for us.” – Broderick

“We all have things in life we have to deal with. What are the silver linings, what are the hidden blessings? Resilience really is how to jump back into your life” – Jill

How Do We Build Resilience?

“When i first was diagnosed, I did a lot of Bible journaling and some quiet inward time to think about it, and that really helped. Building community is a real big part. You need to connect with your family, your friends, and the people that are out there and let them help you. Focusing on personal health, things like yoga and meditation are huge, eating well.” – Jill

Boosting Immunity

Walking

  • Forest Bathing
  • Getting out into Nature
  • Dancing with “IV”
  • One step at a time

Eating Well

  • Dinner with family
  • Phase out added sugar
  • Smoothie game: Guess what’s in this one!

Stress Reduction

  • Breathing exercises
  • Mitigating suffering added by your own mind
  • Mindful acceptance and non-judgment

A Timeless Call to Action

It’s a matter of picking up the pieces, looking forward, and figuring out what you need to do next and what’s important to you. Be true to yourself… Cancer or any serious life-threatening thing really puts it in perspective. What you want to do with the rest of your life? – Gerri

Top Tweets

“Current me is where the fun is”

Alan's Top Tweet


Resilience Comes from Hope

Barby's Top Tweet


The Present is the Only Thing We Can Control


Full Chat

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.

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.

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


For complete list of #patientchat topics and transcripts, click here.

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


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

Community Check-In #patientchat Highlights

Last week, we hosted a “Community Check-In” #patientchat with Amanda Greene (@LALupusLady). The #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets

Telehealth to save the day?


Online communities won’t be canceled


Use social media to find patients like you


Full Chat

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

Best Practices for Participating in a Patient Community #patientchat Highlights

Last week, we hosted an #patientchat on “Best Practices for Participating in a Patient Community” with Carly Flumer (@carlyflumer). The #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets

Dos and Don’ts


A Good Online Community


Always Somebody There


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