Tag Archive for: patient empowerment

PEN Featured On Advarra’s In Conversations With Podcast

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Patient Empowerment Network (PEN) recently had the opportunity to participate in a podcast with its partner Advarra through their In Conversations With podcast. In this episode, Becoming Your Own Best Advocate Through Patient Empowerment, Advarra’s Chief Commercial Officer Robann Cunningham and PEN’s Director of Development Robin Barnes discuss how patients can become their own best advocate through resources like those provided by PEN. 

Advarra’s Mission

Advarra helps advance how clinical research is conducted: gathering life sciences companies, CROs, research sites, investigators, and academia together at the intersection of safety, technology, and collaboration. With its trusted review solutions, innovative technologies, and consultants and worldwide connections, Advarra provides solutions that help safeguard trial participants, empower clinical sites, ensure compliance, and optimize research performance. Advarra is working on clinical trials to help make them safer, smarter, and faster for all patients. You can learn more about them at advarra.com.

Breast Cancer Survivor’s Lessons About Patient Engagement

Robann Cunningham of Advarra has a personal connection to Patient Empowerment Network’s mission through to her own experience as a breast cancer survivor. After her diagnosis with triple-negative breast cancer with a BRCA mutation, Robann was scared but also felt fortunate to have knowledge of how to take control of her cancer journey as an engaged patient. She knew about the importance of exploring treatment options and multiple opinions to decide on the best path forward for her. Robann feels that one of her goals in her mission as a breast cancer survivor is to increase patient engagement in clinical trials, and the podcast with Robin is one way she has worked toward fulfilling her goal. 

Robann collected some key takeaways from her cancer journey including:

  • Finding the right path for you is key—and knowing how to find it is even more important.
  • Education and awareness are everything.
  • We can increase the number of success stories.

You can learn more about her breast cancer experience in her article “What Being a Breast Cancer Survivor Taught Me About Patient Engagement.”

Empowering Patients 

The Advarra In Conversations With podcast provides a rich conversation about patient empowerment. Robann shares some things about her cancer journey, while Robin shares about her experience as a care partner for her husband. Robann shared her views about empowerment, “The humbling experience that that was being in this industry, but I think what I really took away and what’s important here is that I would define empowerment as both awareness and advocacy and I think that if we can raise awareness, advocate, and then I would also say education is critical.”

Robin also shared PEN’s views, “Empowerment will mean something different to each and every one of us, but at the Patient Empowerment Network the core of what we believe empowerment means is having the knowledge and also the confidence to become a co-decision maker with your healthcare team, and what that often looks like is insisting on personalized treatment options it means asking questions, it means having the knowledge and education though resources…to be able to come with confidence to that conversation and make sure that what you are receiving is the right treatment for you…”

Clinical Trials Process

Clinical trials, of course, are discussed in the podcast. Robin shared, “Encouraging patients and care partners to not think of the clinical trial, as a last resort option if other treatments have failed but to consider it at the very first step of a diagnosis, and that, of course, ties into when appropriate biomarker testing and all of these wonderful tools that we  have today.”

Regarding clinical trial informed consent documents, Robann shared, “I recommend if anyone out there is considering getting involved is to really take your time through that process, make sure that you are afforded that opportunity to have a conversation with the investigator and staff you ultimately you need to have a level of confidence and a good relationship with your investigator and their team…” Patients must be given time to take the document home to review the terms and to discuss them with their care partner and family members to ensure the patient is comfortable with the proposed research. I know Robann also shared, “…there is a popular saying, which is ‘Nothing about me without me,’ and so much of what you’ve shared today, I think, really speaks to that.”

In the podcast, Robann and Robin also discuss timely topics including health literacy, health equity, actionable resources, community-based organizations, and goals for the future. PEN is excited to be partnering with Advarra to help advance patient empowerment and clinical trial efforts. We hope you can take some time to listen to the podcast or to read the podcast transcript – and to read Robann’s article about her breast cancer experience and what she learned about patient engagement. Stay tuned as we report more about our ongoing partnership efforts with Advarra in our dedicated efforts on the behalf of cancer patients and care partners.

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Six Ways the digital sherpa® Train-the-Trainer Program Can Empower Your Members

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The Patient Empowerment Network digital sherpa® program empowers mostly older cancer patients to improve treatment outcomes through digital technology. Program participants learn skills including identifying credible online resources, using telemedicine and their patient portals, and how to use mobile devices to improve health.

Benefits program participants have learned include how to:

1. Use Patient Portals

Using patient portals can be helpful to save time for common tasks. Participants learn about booking health provider appointments, requesting prescription refills, and getting lab test results.

2. Perform Google Searches

Doing Google searches can be helpful when carried out with a watchful eye. Participants learn about performing Google searches, finding reliable sources, adding bookmarks for favorite websites, and copying and sharing links with others.

3. Utilize Social Media

Twitter and Facebook social media tools can be useful for those seeking more information and support. Participants learn the nuts and bolts of both tools including how to set up an account, checking and maintaining privacy settings, how to post or tweet, finding experts, connecting to online support communities, using hashtags and tweetchats, and posting photos.

4. Benefit From Telemedicine

Learning about telemedicine and best practices can be helpful for optimal visits. Program participants learn how to install video conferencing tools, how to be prepared for a telehealth visit, and who to contact if they run into issues.

5. Improve Health Travel

Using mobile apps can assist patients and care partners in health-related travel. Participants learn about the apps Uber and Lyft and are shown how to set up accounts.

6. Engage With Patient Communities

Engaging with patient communities can be reassuring for patients and care partners alike. Program participants learn about patient communities such as Inspire, PatientsLikeMe, MyLifeline, StupidCancer, HealthUnlocked, Cancer Support Community and how to join support groups in them.

By taking part in the digital sherpa® train-the-trainer program, participants can learn valuable skills to gain confidence and to improve treatment outcomes through digital technology.

Patient Advocacy: How To Increase Twitter Engagement

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While Twitter might not be as popular as other social networks such as Facebook, Instagram, or YouTube, it nevertheless has a large following among healthcare professionals and patient communities. Twitter has the potential to be a powerful tool that keeps you informed, encourages collaboration, amplifies advocacy activity, and raises awareness of your cause.

When Twitter first launched in 2006, gaining traffic from it was easy. Since there wasn’t much competition among users and the concept of tweets was still relatively new, people were curious to click on the links users tweeted.

Today, gaining followers and increasing engagement is harder. But there are ways once you understand how Twitter’s algorithm works. In this article, we’ll cover some tips and techniques you can use to improve your engagement rate and make a bigger impact with your advocacy campaigns on the platform.

How Twitter’s Algorithm Works Today

1.Relevancy

Since 2018, Twitter’s main timeline is no longer chronological. This means an older tweet may appear alongside a tweet from two minutes ago and one from ten minutes ago. Twitter’s algorithm sorts the tweets you see based on your interests, which is why Twitter may sometimes show you a tweet from someone you don’t follow.

What this means for you: Because Twitter shows you content it thinks will be of interest to users, you should check that the people you follow and those who follow you share the same interests.

2. Timeliness

Twitter’s algorithm is heavily weighted by time so timing is one of the most crucial factors that influence how well your Tweet performs and how many people engage with your content.

What this means for you:  You need to post at a time when people are active online for a better chance of visibility. Based on research by social listening platform Sprout Social the best times to post on Twitter are around mid-mornings and mostly on weekdays (Central Time). This will of course vary depending on location. Therefore, it is best to experiment with your timings to discover what works best for you. By tweeting at various times, you can determine when your audience is most active on Twitter and use this information to identify the optimal  times to increase visiblity for your tweets.

3. Credibility

Twitter’s algorithm favors credible accounts. Even if someone doesn’t read a single tweet, they’ll see your bio. They will decide quickly whether or not to follow you when they do.

What this means for you:  In order to make your profile look credible be sure to fill out every detail, such as your profile photo, bio, location, credentials, and so on. Your Twitter profile should be regarded as an important part of your professional advocacy activities. When people encounter your online profile, what will be their first impression of you? What might motivate them to follow you?   Do you need a more professional picture to represent yourself online? Do you have an image for your header? As an example, you could use a picture of yourself holding a sign with a strong message. Maybe you’re working on a campaign or a project right now. In that case, why not include an image that represents this in the header.

How To Increase Your Twitter Engagement

We’ve looked at Twitter’s algorithmic elements, now let’s see how we can take advantage of this information to boost engagement on the platform.

What is Twitter engagement?

Simply put Twitter engagement is when someone engages with the content that you post. It includes:

  • Mentions of your Twitter handle
  • Comments on your Tweets
  • Likes of your tweets
  • Retweets of your tweets
  • Clicks on links you included in your tweets

Furthermore, Twitter followers and activity are positively correlated. A Twitter user who is active will have more followers, increasing the likelihood that they will be engaged.

What is a good engagement rate on Twitter?

Twitter’s average (high) engagement rate is currently 0.33 percent, significantly lower than that of Facebook, which stands at around 1 percent.

Engaging content is something people will see, like and retweet.  Early engagement is especially important. Tweets have a half-life of around 18-24 minutes, meaning that half of the engagement will be received in a little under half an hour. If your tweet doesn’t get much engagement within the first couple of hours, it won’t be shown to more people.

The following pointers will help you get the most out of your tweets, and if you use them consistently, you should see a boost in engagement.

Respond to engagement

The simplest way to get more engagement is to get in the habit of monitoring your notifications tab and responding to each person who @mentions, comments and retweets you. If you’re having trouble getting people to engage with you, be the one to start the discussion. Reciprocity is a big reason why people want to follow and interact with you. To start a conversation, ask a question, reference other accounts in your tweets, repost others’ tweets utilizing the quote tweet tool to add your own thoughts, or create a poll. Polls are a Twitter feature with built-in engagement – and not utilized as much as they could be.

Include a Relevant Hashtag

Hashtags, like Instagram, are an important aspect of Twitter usage. Tweets with hashtags have a 100 percent increase in engagement, according to Twitter’s own findings.

Tip: Visit symplur.com to find relevant hashtags for your disease area. If you can’t find a hashtag related to your topic, you might consider creating your own. For more information on using hashtags strategically read Everything You Ever Wanted To Know About Hashtags in Healthcare…But Were Afraid To Ask!

Take Part In Twitter Chats

Joining a Twitter chat is a fantastic way to meet new people and engage in conversation. People will come to know you if you attend a Twitter chat on a regular basis, and you’ll be able to swiftly create and grow your own network of supporters. Again, you can find a list of disease-specific chats at Symplur. A great place to start is by joining the Empowered Patient Chat  #PatientChat held every other Friday at 10:00 am Pacific / 1:00 pm Eastern.

Add Images To Tweets

You’ve surely heard this before, but it’s worth reiterating: images matter — a lot.  People connect more emotionally with images than text, and in an increasingly crowded digital landscape images can break through the online content clutter. Adding visual appeal to your tweet is a smart way to make your content stand out among a sea of tweets. Not only does adding an image increase the visibility of a tweet, but tweets with images also get more retweets and likes (according to Twitter, a whopping 313% more engagement.)

The type of visual assets you can create include images, videos, infographics, quotes, and GIFs. Take advantage of the fact that you may add up to 4 images to your tweets (all you have to do is click on the photo icon after you’ve added your first image, then add up to 3 more images) and build a carousel of images to draw the reader’s eye.

Tip: Stick to the same colors, typefaces, and layouts in all of your photographs to establish a strong visual identity.

Reshare your best content

Twitter is a fast-paced environment where messages are quickly buried. As mentioned already because a tweet’s shelf life is so brief, you’ll need to publish your best content on Twitter several times to boost visibility. To find your top-performing tweets, use Twitter’s built-in analytics tool (analyticstwitter.com). It’s likely that if this content did well once, it’ll do so again.

Tip: Change things up by adding a powerful graphic, highlighting a crucial statistic, or converting a statement into a question. Experiment with publishing at various times and on various days to see how this affects your engagement rate.

Ask people to share your content

A simple “Please Retweet” can increase the likelihood that people will reshare your content. Yes, it sounds simple, but it works!

As always, thanks for reading. I hope you learned something new today.

Rx for Community Wellness and Achieving Equitable Care

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Culturally competent whole person care is critical in work to reduce health inequities. The standard of care for underrepresented communities is not enough, treating the whole patient is crucial, in cooperation with existing care. We at Patient Empowerment Network are dedicated to working toward equitable healthcare for all, and our Rx for Community Wellness program has provided another opportunity. Here’s a look at the program, links to content and highlights from panelists and participants. PEN is grateful to our partners Triage Cancer, Leukemia and Lymphoma Society (LLS), CancerGrace and American Urological Association (AUA) for helping to raise awareness of this program.

Importance of Whole Person Care

Whole person care is the patient-centered optimal use of diverse healthcare resources to deliver the physical, behavioral, emotional, and social services required to improve care coordination, well-being, and health outcomes. Whole person care is critical for improving health outcomes because human wellness depends on coordination of multi-dimensional, multi-systemic care. For people with cancer, social, emotional, economic, and environmental conditions impact their health. 

Rx for Community Wellness focuses on conversations between at-risk populations and key health experts resulting in crowdsourced information that can help empower diverse communities and their providers. This information can also help motivate health leaders to understand issues that exist and to push for solutions to overcome them.

Whole Person Care Resources 

The Rx for Community Wellness program focuses on moving toward culturally competent whole person healthcare. Content for this program was crowdsourced from real-life experiences that provided a way for underrepresented patients and community partners to share their experience with whole patient care, both positive and negative with the healthcare system. In an effort to create models for culturally competent whole person care, the learning resource includes meditation and nutrition tools. These tools were created to help empower patients in optimizing their well-being and supporting them in having the best possible cancer treatment outcomes.

The Rx for Community Wellness programs have covered the following topics:

 Wellness Rx Meditative and Nutritional Tools include the following resources:

A crowdsourced resource is also available:

Rx for Community Wellness Program Highlights 

The Rx for Community Wellness program has generated a wealth of information for patients and healthcare providers alike. The information has informed others about inequitable healthcare experiences while also serving to educate and empower patients with whole person care resources.

Aswita Tan-McGrory shared about how pediatric medicine has provided a roadmap to improve adult whole person care. According to Tan-McGrory, “…they definitely have cornered that market of really thinking of social determinants of health or the whole system for their pediatric patients in a way that I think adult medicine is just catching up on…because you’re working with kids, you can’t not talk to the parents, not think about what is the school like…so you’re forced to because of that environment, but that’s really a model that we should be using for all of our patients.”

 Dr. Broderick Rodell, a naturopathic doctor and wellness expert, shared advice that he’s found helpful in maintaining his own health and wellness. According to Dr. Rodell, “I do spend a large amount of time focusing on training the mind, reducing stress, educating yourself around, what can I do to eat well, nutrition, what can I do to exercise? To get my body moving, what are the various things that I can do to care for myself to the best of my abilities…”

Mexican American patient Sasha Tanori shared about her experience with inequitable healthcare. According to Sasha, “…where I come from, it’s a very like low demographic, we don’t have a whole lot of resources and stuff like that. So getting care is…it’s not the easiest. I’ve had to go to several doctors before I even got diagnosed…I had to be sent to San Diego because they had no idea what was going on. They were like, ‘We don’t know what’s wrong with you. Go home.’ They kept giving me misdiagnosis after misdiagnosis, and especially with being a plus-sized Mexican American, they were just like, ‘Oh, if you lose a couple of pounds, you’ll be fine.’”

Dr. Nicole Rochester shared information about one of the impacts of stress on health. According to Dr. Rochester, “…there’s a study specifically looking at prostate cancer by Dr. Burnham, a researcher, and what they found in this study is that they looked at prostate cancer cells from African American patients and white patients. And when they treated these cells with stress hormones, they saw that the Black patient’s prostate cells would begin to up-regulate the genes and the proteins that are known to make that cancer more resistant to therapy.”

 Dr. Rodell shared his opinion about the U.S. healthcare system and advice for patient advocates, “…if you’re not spending enough time with patients and you’re not communicating with other practitioners that are working with these patients, then you’re not going to have a very good idea of what’s going on in this patient’s life and what could be contributing to their illness. So, therefore, it’s incumbent upon the patient, we as individuals, to try to learn as much as we can and try to get our communities involved to help create educational programs to facilitate that education and that awareness.”

Some program participants provided valuable testimonials about the Rx for Community Wellness programs.

‘I will make more of an effort to get my team members to read information that has been shared on my tests and progress.” – 

“My hematologist is pretty responsive, but I don’t have a holistic doctor, and I’d like to get one. This program definitely raised my awareness of equity issues. Sasha was great explaining her issues. Thank you!”

“THANK YOU for the amazing panel you put together and the moderator (wow!) Perfect representatives from 4 angles/roles = complete and powerful picture/movie.”

How to Take Action for Community Wellness

Valuable advice has emerged from the Rx for Community Wellness program. Anyone with a desire to help can take action to improve care for underrepresented communities. Some recommended actions toward equitable care include:

  • Educate yourself as a patient to work toward better health and wellness. Take advantage of the Rx for Community Wellness resources to help yourself and others who may be struggling with their health.
  • Healthcare providers can read patient experiences to gain an understanding of their points of view and try to do more active listening to make their patients feel heard.
  • Take action to ensure you use wellness practices like exercise, healthy eating, and exercise to decrease stress levels and to maintain a healthy body, mind, and spirit.
  • Use the crowdsourced solutions in the Equity Rx Crowdsourced Resource to learn patient and patient advocate suggestions for more equitable healthcare.
  • If you have an experience to share of when you experienced a health disparity, contact us at question@powerfulpatients.org and let us know what future topics you’d like us to cover.

What Is the Patient’s Role in WM Treatment Decisions?

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What Is the Patient’s Role in WM Treatment Decisions? from Patient Empowerment Network on Vimeo.

Dr. Jorge Castillo discusses the patient’s role in their Waldenström macroglobulinemia (WM) treatment decisions and shares advice encouraging patients to be active participants in their care.

Dr. Jorge Castillo is Clinical Director at the Bing Center for Waldenström Macroglobulinemia Dana-Farber Cancer Institute and Assistant Professor of Medicine at Harvard Medical School. Learn more about Dr. Castillo, here.

See More From The Pro-Active Waldenström Macroglobulinemia Patient Toolkit

Related Programs:

Emerging Waldenström Macroglobulinemia Treatment Approaches

Emerging Waldenström Macroglobulinemia Treatment Approaches

 When Is It Time to Treat Waldenström Macroglobulinemia?

When Is It Time to Treat Waldenström Macroglobulinemia?

 Why Patients Should Speak Up About WM Symptoms and Side Effects

Why Patients Should Speak Up About WM Symptoms and Side Effects

Transcript:

Katherine:                  

What do you feel is the patient’s role in treatment decisions?

Dr. Castillo:               

From my perspective, the patient’s role is very important. I need, as a physician, that the patient feels that it’s part of the team here. So, when patients come to see me, I strongly encourage patients to bring as many people as they want with them. If they want somebody on FaceTime at the same time, I’m happy with that too. And that helps because the amount of data that we provide, the amount of information that we provide, is a lot in terms of quantity. But sometimes, it’s not easy to understand when you just hear it one time, right?

So, having somebody taking notes, having somebody else taking notes, having somebody else listening, somebody else asking questions, and then somebody else explaining back to the patient – the patient is looking for the best for them, but if he’s also affected by the whole process. It would be naïve to feel – or to think – that somebody was told they have an incurable blood cancer, and they are completely paying attention to everything you’re saying, after you said something like that.

So, I think it’s important for patients to be there with family, friends, or whoever wants to be there to help out. I think that’s a really important aspect. Then, number two is you need to know about your own disease. And I am fortunate to work with a group of patients who are highly educated, to the point that they get to know more about their disease than their own doctor. And I think that’s key. I think that’s important. For me, that is not threatening or challenging. I think that is actually a good thing.

And that way, I can have a more direct conversation, meaningful, because I understand that the patient is understanding what I am saying, and we are trying to speak the same language, so I think that is key also. So, bottom line, I think education from the patient perspective, involvement of their care, I think that’s key so they can be their own best advocates.

There is going to be a lot of – since it’s a rare disease, there’s going to be a lot of backs and forths with different physicians. Some physicians are going to be more intensive and trying to treat when the patient doesn’t need to be treated. The opposite is also true in which a patient, they do need treatment, and the physicians are saying, “No, we can wait a little bit longer.” And again, that has nothing to do with the quality of the doctor. It’s just the fact that the disease is rare, and to keep up with it is very difficult. So, the patient being their best advocate is actually a very important role that they should have.

Katherine:                  

Knowledge is power.

Dr. Castillo:               

That’s right.

The Importance of Patient Self-Advocacy in Bladder Cancer Treatment

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The Importance of Patient Self-Advocacy in Bladder Cancer Treatment from Patient Empowerment Network on Vimeo.

Bladder cancer expert Dr. Shilpa Gupta encourages patients to advocate for themselves and to become active members in their treatment and care decisions.

Dr. Shilpa Gupta is the Director of the Genitourinary Medical Oncology at Taussig Cancer Institute and Co-Leader of the Genitourinary Oncology Program at Cleveland Clinic. Dr. Gupta’s research interests are novel drug development and understanding biomarkers of response and resistance to therapies in bladder cancer. Learn more about Dr. Gupta, here.

See More From The Pro-Active Bladder Cancer Patient Toolkit

Related Programs:

 

Emerging Approaches in Bladder Cancer Treatment

 Understanding Common Bladder Cancer Treatment Side Effects

Understanding Common Bladder Cancer Treatment Side Effects

Who Should Be on Your Bladder Cancer Care Team?

Transcript:

Katherine:                  

Right. Let’s talk about patient self-advocacy for a moment. Patients can sometimes feel like they’re bothering their healthcare team with their comments and their questions. Why is it important for patients to speak up when it comes to symptoms and side effects?

Dr. Gupta:                  

Yeah, I think the patients have to be their own advocates, right? Unless they do tell their team about what they are going through, many times action will not be taken unless they’re actually seeing their team in real-time.

And sometimes that visit may not be happening for months so it’s very important to never feel that you’re bothering the teams. And nowadays, with all these electronic ways where patients can communicate with their teams, I think patients are very aware that they can send a MyChart message, for example, and someone will get back to them within a day. So, I think that is really important and the way they can communicate with their teams has also evolved.

Katherine:                  

How do you think patients can feel confident in speaking up and becoming a partner in their own care?

Dr. Gupta:                  

I think they have to tell their doctors during their visit that they would like to – whatever their expectations are and what they would like their teams to do to fulfill those expectations.

I think that’s the best way I can say this. That they should always speak up no matter what and if they feel that their concerns about treatment are not being heard, then they should let their treatment teams know and ask what alternative treatments there may be. Or, if their life goals have changed, sometimes patients want to get aggressive treatment and sometimes they just don’t want to go through it anymore. They should let their teams know so, adequately; the goals of care can be modified.

Katherine:

Right. If a patient isn’t feeling confident with their treatment plan or their care, should they consider a second opinion or consulting a specialist?  

Dr. Gupta:

Absolutely. I think every patient has a right to consult a second opinion or get second opinions, or even more opinions if they want to make the right decision. Many times, patients are told about one treatment option, and then they want to know, “Well, what alternative options do I have?” “What if I really don’t want my bladder out?” “Is there anything else that can be done?” So, they should be seeing a radiation oncologist in that case.  

I think the way we can really make a difference and offer multidisciplinary care is to have the patient see a surgeon, a radiation oncologist, and a medical oncologist. That’s true multidisciplinary care for anybody with localized disease. For metastatic disease, we have a lot of options and usually medical oncologists are the ones who manage it.   

Patients can always get second opinions if they feel they want to do something less or more aggressive.   

Katherine:

What advice to have for patients who may be nervous about offending their current doctor by getting a second opinion?  

Dr. Gupta:

That’s a great question, Katherine, and I know a lot of patients feel that their doctors may feel offended, but in my experience when – if my patients are not local or they – I actually encourage them to go get second opinions and even make referrals to places which may have trials if we don’t have that. It’s always good to have the patients be able to decide and I don’t think nowadays doctors take offense if patients want to get another opinion. In fact, we try to collaborate with our community oncologists.  

Where, let’s say patients are currently being treated and they come to us to discuss trials or just to discuss if they’re on the right track. We reassure them and reach out to the community doctors that – yes, we totally agree with what the patient is doing, and these are some other options down the line. And, with the advent of virtual health it’s really become a lot more collaborative because patients are still getting treated locally. When the have their scans and have questions they can schedule a virtual appointment with their doctors in institutions where we have more treatment options like trials.  

Katherine:

Dr. Gupta, if patients want to learn more about bladder cancer, or if their families want to learn more what are some credible resources that you would send people to?  

Dr. Gupta:

Yeah, I think it’s always good to get credible information than just Googling things which may or may not be true. Bcan.org is a very powerful resource that is a Bladder Cancer Advocacy Network, and as the name implies it’s for the patients, made by bladder cancer advocates.   

That’s one of the resources that we highly recommend. Then there’s the resource that you all are working on. So, I think these collectively are the best sources of information which patients should try to stick to.   

Katherine:

Right. That’s good advice. To close, what would you like to leave our audience with? What are you hopeful about?  

Dr. Gupta:

I think I would like to say that there’s a lot of good information, there’s a lot of advocacy resources. Patients should try to get their information from these verified sources and bring it to their care teams. And never hesitate to reach out for whatever they need during their diagnosis and treatment phase. Always ask questions. Ask about clinical trials. Ask about alternative options. That’s what I would leave the message to be.   

Katherine:

Thank you so much for joining us today, Dr. Gupta. We really appreciate it.   

Dr. Gupta:

Thank you, Katherine.   

Finding Value in Your Care: Take Action Checklist

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1. Am I getting the best care or even offered the best?  

  • Is the care appropriate for my age? My condition?
  • Am I being given more than one option, if at all possible, with the pros and cons explained to me?
  • Is my provider willing to recommend me to a colleague for a second opinion if I feel that I need one?
  • Does my healthcare provider care for me as an individual or do I feel lumped together with other patients?
    • Do I feel comfortable asking questions? 

2. Are the ordered scans and blood work helping me in my care or are they ordered “just because?”

  • Does my provider explain the reasoning behind these orders (i.e. what information we’re looking for, how this will help progression of my care, etc.)?
  • When the results come back:
    • Do I have access to them? If so, are they easy to find?
    • Are they explained to me in a way that makes sense?

3. Is insurance providing me coverage or am I consistently receiving denials/is my provider having to do a peer-to-peer? 

  • Does my coverage make sense?
    • Are providers transparent about how much something may cost?
  • Are terms explained?
  • Can I easily receive access to a care representative?

4. Does my employer offer benefits that fit what I need? 

  • Health insurance 
  • Short-term and long-term disability 
  • Options for FSA and/or HSA accounts 
  • Employee assistance programs 

5. Are the medications that are prescribed working as intended? 

  • Do I understand how to use them correctly? 
  • Do I feel comfortable telling my doctor if I have any side effects and need to switch to something else? 
  • Are they affordable or are there alternatives? 

6. Is a patient portal available and easily accessible? 

  • Is it easy to find what I’m looking for? 
  • What capabilities does the portal have?
    • Can I message my provider?
    • Can I view lab and imaging results?
    • Can I schedule appointments and see upcoming appointments?
    • Can I see visit summaries of previous appointments? 

About Patient Empowerment Network (PEN)

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Founded in 2009, Patient Empowerment Network (PEN) is a 501(c)(3) non-profit organization working on behalf of cancer patients and care partners. For more than a decade, we’ve been improving treatment outcomes and health equity for cancer patients and care partners at every step of their journey. PEN was founded by a chronic lymphocytic leukemia (CLL) patient, and over time we’ve dramatically expanded the cancer types for which we provide resources and support. Here’s a closer look at our origins, mission, programs, and goals for the future.

Origins and Vision of PEN

Unfortunately, a cancer diagnosis can overwhelm both patients and their loved ones. The need to take control after cancer diagnosis provided the seed, and the idea for PEN was born. With patients and their families in mind, we embarked on a path toward empowering them to ask the right questions at the right time for improved care. With this empowerment, patients and care partners built their health literacy to make informed choices in shared decision-making along with their care team.

PEN Mission

With that vision in mind, we penned the mission statement to guide the work ahead. Our mission is to fortify cancer patients and care partners with the knowledge and tools to boost their confidence, put them in control of their healthcare journey, and assist them in receiving the best, most personalized care available to ensure they have the best possible outcome.

How PEN Is Different

So how does PEN differ from other cancer advocacy organizations? At PEN, we take patient education a step further; we educate, then ACTIVATE cancer patients and their care partners to become shared-decision makers with their healthcare teams. By insisting on the most current and personalized care available, empowered patients achieve better treatment and health outcomes.

PEN Programs

With a wide array of content, our programs enhance patient health literacy to enable shared decision-making and to provide informational and educational resources to empower patients and care partners at every step of their cancer journey.

In 2020, we adopted the Path to Empowerment Framework to guide us in empowering patients and care partners along this journey. We know not everyone’s experience with cancer is the same, there are commonalities. Based on the National Cancer Institute’s Cancer Experience Map, we have outline six commonalities. Within the framework’s six categories, you’ll find easy-to-understand and reliable information.

Path to Empowerment Framework

The Future of PEN

We are on track to serve over 200,000 patients and care partners in 2021. And in the future ahead, we aim to continue empowering patients and their families with knowledge to improve their treatment and health outcomes; build key strategic partnerships to expand into additional disease areas, expand the reach and visibility of PEN content; and locate and build additional funding resources. With these goals in mind, PEN can continue fortifying a sustainable future of serving and empowering patients and care partners toward optimal care and health outcomes for all.

Patient Empowerment Revisited: Part 2

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Welcome back to the second part of this discussion on patient empowerment. In Part 1 we looked at self-advocacy and the importance of having access to information which allows us to take a more active role in our care. We also looked at how a team-based, partnership approach to care – one in which the patient is respected as a person – facilitates a more empowering environment. 

In Part 2, we’ll look at the role of peer to empowerment and explore whether the term “empowerment” is even the right term to use. Finally, we’ll conclude with some thoughts on the need for systemic change and a shared vision to embed new solutions into healthcare systems and pathways.

Theme 5. Peer to peer empowerment

“Engagement with your community, bolsters our confidence with good information.” – Britt (@mewhinney). 

Information, knowledge and the confidence to become a more active participant in our care also develops from engagement with other patients.  As Conor describes it, “I find being part of patient groups empowering for so many things, including where to find information, other peoples experiences and above all, chatting with others who just understand.” 

Piarella Peralta de Wesseling (@piarellaperalta), Patient Advocacy Lead at Diaceutics, is unequivocal in her belief in the collective wisdom and power of patient communities. “It is not clinicians nor industry nor government who have empowered me as greatly as the community of empowered individuals themselves,” she says. “No one has greater urgency to get it right, to evaluate and decide what best fits our lives than us facing the very challenges of the disease. People come to me and my fellow patient advocates to ask very simple questions that in the end just have two purposes, feeling heard, share in the knowledge of the devastating news that they have learned they have cancer, be in solidarity and then to know how they can make the best decisions relevant to them.”

Theme 6. Is ‘empowerment’ the right term to use?

When crowdsourcing these comments, I received some push-back on the use of the term ‘empowerment.’  To quote Piarella, the term itself “creates a sense of power differential and that is perhaps intuitively contradictory to the notion that each human has a right to be autonomous and self-determined.”

Kristie Konsoer (@kkbadger1) agrees. “For me, empowerment means taking action/speaking up so I feel like I’m participating in and influencing my health care,” she explains. “I empower myself. Empowerment comes from within. An authority can’t give it to me, but we can work together toward the same goals.”

Here are some more quotes expressing similar viewpoints. 

“For what it’s worth I think patient empowerment is lacking. It implies patients need authority given to them by another. Patient rights seem more fitting. Patients have rights, and doctors and healthcare providers must ensure those are not infringed but are guaranteed.” Mark Samber (@MarkMyWords67).

“I cringe at the term! Despite its well-meaning origins, it’s a conversation stopper within our hierarchy of medicine.” – Carolyn Thomas (@heartsisters).

“Empowerment is a convenient shorthand that smacks of condescension, as if someone is deigning to award me some of their power when I presumably have little or none. How about respecting patients and taking our input seriously. We can strengthen our own power by exercising it.” – Nancy Seibel (@nancylseibel).

“Like everything, thoughts on this evolve. #Patientsinvolved means patients can be as passive or pro-active as they like, but it also means they are heard and asked about their thoughts and needs. Empowerment perhaps is self-empowerment. Not that patients are ‘given power’?” Sharon Thompson (@sharontwriter).

“I think patients like to ‘feel’ empowered, because the word connotes being engaged, participatory and pro-active. At the same time it can be overused, although when people say they’re empowered by ‘xyz’, there’s ‘power’ in that.” – Cathy Leman (@dammadbrstcancr).

“Patient empowerment is a concept I believe in, but as a patient activist, I find the term somewhat passive. I’m also concerned that power is not something men diagnosed with breast cancer feel they have. Faced with a labyrinth of medical institutions and pink charities geared towards dealing with this predominantly female disease, those of us in the one percent cohort feel virtually powerless.” – Rod Ritchie (@malefitness).

“Not a big fan of the term because what exactly does it even mean? Empowered vs powerless, or what? Also, what empowers each of us varies so much as we are all unique. It’s another trendy buzz word. But if it works for some, that’s fine too.” – Nancy Stordahl (@nancyspoint).

“I use the word ‘empower’ in my mission statement but only believe it is worthy of a mission statement or used anytime when ACTION is taken. A word is empty without the tools/resources to use it.” – Terri Coutee (@6state).

Theme 7. Empowerment requires a systemic approach

The final theme centered around the need for a systemic shift in how patients are treated in the healthcare system.  As Julia (@bccww) put it, “empowerment would be health care services being appropriately funded and accessible to enable those with serious/long term chronic conditions to live well. It’s about being enabled (for me) to manage my long term health conditions, live well with them but with access to support and/or treatment (if I need it) to keep on course.”

Elizabeth Nade (@elizabethnade11), who prefers the term “patient activism”, points out, “I am already empowered. I am seeking change to the current healthcare model because it is insensitive and unresponsive to the needs of patients and their families. I want to challenge the relationship to affect change.”

Similarly, Patty Spears (@paspeers88), emphasises the need for systemic change. “I don’t like the term and how it’s usually used. Even unempowered patients need good quality care, not just empowered patients.  Rather let’s ensure equal and high quality care for ALL patients. Putting the burden on the patient (to be empowered) is a bad idea in my book.”

Cardiologist, David Lee Scher MD (@dlschermd), adds the physician voice to the discussion. “Education, awareness and tools are what is needed for patients to self-manage chronic diseases and navigate the healthcare system,” he says. “What you call it doesn’t matter. Labels and phrases (engagement, etc) in healthcare have yet to translate to better care.”

A Shared Vision

To conclude this discussion, I’m turning to Liz Ashall Payne (LizAshallPayne), CEO and Co-Founder @OrchaHealth, a passionate advocate for healthcare  transformation through digital and mhealth.  I  really like what she has to say about working together on a shared vision that puts the patient at the center of the entire healthcare ecosystem. 

“To truly support ‘patient empowerment’ we have to think far broader than the patient, we must also make sure we are empowering those that sit around the patient. 

We need to empower Health Care systems to be incentivised to support this vital work.

We must educate and empower our health care workforce to know how to empower patients 

We must support innovators to know what patients’ needs are, and how to embed new solutions into healthcare systems and pathways.

Above all we must COLLABORATE with a shared vision. 

The current COVID crisis has really brought the whole system together to drive digital uptake amongst our patients and populations, but we are not finished, we must do more, and there has never been a better time to do so.”

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

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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. 

15 Tips To Get the Most From Your Doctor’s Visit

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beautyHave you ever had the experience of leaving the doctor’s office wishing you had remembered to ask a certain question? Or have you left it until the very end to tell your doctor about the real reason for your visit? These so-called “doorknob” questions – bringing up an important concern just as you are leaving the office – can mean your doctor won’t have time to adequately address your concerns. When the average time it takes for a doctor’s visit is fifteen minutes, it’s easy to feel rushed and forget what you wanted to say, or to leave an appointment unsure of the information you have heard. But with a little advance preparation you can learn how to make the most of those fifteen minutes. Follow these fifteen tips to become a more empowered and engaged partner in your own health – and the health of those you care for.

1. When you call to make your appointment, explain clearly why you need to see the doctor. Let the receptionist know how much time you will need to schedule for the visit. If you have any special needs, such as wheelchair access or interpretive needs, let the office know in advance.

2. Be sure to that where you make your appointment accepts your insurance. You can call or go online to your insurance website to see a directory of in-network providers.

3. If this is your first visit to a new physician, gather together any past medical records and family medical history to take along with you.  If you’re seeing other doctors and have information they’ve provided, bring this along too.

4. Write down a list of your symptoms before the visit. It’s a good idea to keep a diary so you can chart your symptoms over time. Include details of the type of symptoms you are experiencing, when these symptoms began, and what makes them better or worse.

Use this common medical mnemonic to guide you.

(O)-P-Q-R-S-T

  • Pain (“Where does it hurt?”)
  • Quality (“What does it feel like?”)
  • Radiation (“Does it move anywhere?”)
  • Scale (“How bad is it? How much does it affect you?”)
  • Timing (“When did it start? How long does it last? Does it come and go? Is it gradual or sudden in onset? What makes it better or worse?”)
  • Other (“Any other symptoms?”)

5. Set the agenda at the start of your visit. Did you know that a patient has an average of 23 seconds to state their concerns before a physician interrupts? According to an article published in The Journal of the American Medical Association, only 28% of doctors know their patient’s full spectrum of concerns before they begin to focus on one particular concern, and once the conversation is focused, the likelihood of returning to other concerns is only 8%. Doctors have a limited amount of time for office visits. In order to use their time wisely they usually set the agenda and control the visit as much as possible. To avoid this happening to you, prepare in advance the top two or three concerns you want to raise with your doctor. Are you looking for a diagnosis? Do you need a new treatment plan or a modification of an existing plan? Are you looking for help with feelings of fatigue or depression? Don’t forget to describe your emotional state and any personal circumstances which may influence your physical health. Write down your main concerns so you are ready to verbalize them clearly at the beginning of  your visit.

6. If you use a self-tracking device, like a Fitbit, download your data and summarize the findings beforehand.

7. Bring a list of all medications you are currently taking, including over-the-counter medications, vitamins, herbs, or supplements. If you have a smart phone or tablet, it’s useful to take pictures of your medication and supplement labels to show the doctor.

8. During your visit, tell your doctor you would like to take notes. If you would prefer to record your notes via your smartphone, ask your doctor if it is ok to do so.

9. Medical care is a conversation. So to have influence in that conversation you have to speak up. If you don’t want the treatment your doctor recommends (or you’re not sure), it’s reasonable to ask if there are other treatment options available. Never be embarrassed to tell your doctor if you don’t understand something she has said. Sometimes doctors use medical jargon without realizing they are not explaining things in terms we understand. Repeat what the doctor has told you to be sure you understand and ask for clarification if needed

10. If you find it difficult to speak up for yourself, or you are facing a potentially challenging diagnosis, bring a friend or family member along for support. This person can also take notes and help you remember what was discussed later.

11. Always be honest with your doctor. You may not like to admit how much you drink, or smoke, or if you have stopped taking your medication because of expense or side effects, but your doctor needs to know about these and other lifestyle matters to ensure you are receiving optimum care.

12. Ask you doctor to explain any test results to you, Request a copy of the results for your own files.

13. Before you leave, be sure you understand what needs to happen next. Do you need any further diagnostic tests? When will you get the results? If you have just received a diagnosis, what are your treatment options? If you have questions or concerns later how should you contact your doctor? You can also ask if your doctor recommends any specific reading materials or websites about your condition.

14. If you have been given a prescription for a new medication, do you understand how and when the medication should be taken? Are there any side-effects, for example drowsiness, you should watch for? How will you know if the medication is working? What happens if you miss a dose?

15. After your visit, review and file your notes along with any test results or other documentation and billing you received. Schedule any follow up tests or appointments right away.

Your relationship with your doctor is one of the most important you have. Advance preparation will help you use your own time and your doctor’s time more efficiently and effectively. When people take an active role in their care, research shows they are more satisfied and do better in how well treatments work. Preparing for your doctor’s visit is an important step toward becoming a partner in your own health care and a better advocate for your health and well-being.