Male Survivor Prostate/Bladder Cancer… A Diary Entry

Real patient experiences shared privately at www.TreatmentDiaries.com.  Read more, share if you like or join in the conversation.  Making sure you feel less alone navigating a diagnosis is important.  Connecting you to those who can relate and provide support is what we do.

Today I am a male survivor of bladder and prostate cancer – annual Oncology visit…still here, still healthy, PSA still less than 1%. Possibility for bladder cancer’s return are extremely minimal. That’s now six years in remission. Now thinking about removing the alien (aka port). To those either starting to deal with this inconvenience or have dealt with it…STAY POSITIVE!

Where it began…. The port was installed yesterday. No big deal, only discomfort came from injection site for the IV (I have crappy veins) and learning how not to sleep on my right side…could be worst. Day 1 of chemo was this morning not bad. I have an incredible oncologist, he’s upfront, informative and has a sense of humor!! The entire Cancer center staff is incredible. With their support, my great friends and especially my wife, the road (although, interesting) will be made a lot easier. Day 2 (consisting of three significant meds) will be interesting.

Completed my first round of chemo yesterday, only two rounds (8 treatments) remain. What have I learned; trust your doctors, do your research to be as informed as possible, surround yourself with positivity, support your body’s recovery by; eating, staying hydrated, and stay positive.

Last week’s sessions marked the halfway point for me, as well as reminded me how tough back to back treatments can be. The good news, my oncologist feels chemo is working and that’s all I need to know. My Christmas present…no treatment this week, well deserved!!

Having a positive, ‘I will survive this’ approach is the only one to take if living is your objective. Due to the aggressiveness of my ureteral carcinoma, bladder removal is being proposed as the best (next step) option. It’s the consensus of four doctors. This includes my oncologist who is someone that consistently emphasized a focus on my life’s quality and quantity above all else. As a result, we continue to have very frank and realistic conversations. Essentially, I trust him. It will be a significant change, however a good friend endured a similar situation more than six years ago. Her insight benefited me greatly during chemo and I’m certain, will continue prior to and after surgery. Stay positive and continued success to you.

A year ago, my life changed significantly…I was diagnosed with stage 3 bladder cancer. Later it was determined prostate cancer had also joined the party (need to limit those medical malady invites).    The prior 12 months allowed me to experience (against my better judgement) life’s highs, lows and a great deal of uncertainty. But with support of friends, their prayers, a positive mindset, humor, access to an incredible medical staff, and an extremely supportive wife, I’ve continued to stay upright.  Manage to stay upright despite; 12 rounds of chemo (Cisplatin sucks), bladder removal/reconstruction, losing 30 pounds in 2.5 weeks’ post bladder surgery, an inability to taste food during the holidays (not to mention I couldn’t drink), a dreadful winter, multiple catheters and pills, lots of pills.   Not that I think about it…. I didn’t have a good time.

This week my last three-month consult was completed. All the news received was the best I could hope for….no indication of cancer at this time. Now I am no longer a patient, but a patient/survivor who should share his experience with others. To all of you who posted to my diary…. THANK YOU!!  I can only hope to do the same for others!

Immunotherapy Patient Summits 2017

The Cancer Research Institute (CRI), the world’s leading nonprofit organization dedicated exclusively to advancing scientific efforts to develop new and effective immunotherapies for all forms of cancer, announced that its 2017 Immunotherapy Patient Summit Series will travel to five U.S. cities to provide free educational programming designed for cancer patients and caregivers who are seeking to learn more about cancer immunotherapy and clinical trials.

Immunotherapy is a type of biological therapy that uses substances to stimulate or suppress the immune system to help the body fight cancer, infection, and other diseases. Some types of immunotherapy only target certain cells of the immune system. Others affect the immune system in a general way. Types of immunotherapy include cytokines, vaccines, bacillus Calmette-Guerin (BCG), and some monoclonal antibodies.

Building on the success of its inaugural Immunotherapy Patient Summit hosted in New York City last September, CRI has expanded the 2017 program to include the following cities:

Who Should Attend?

People of all ages, cancer types, and stages are encouraged to attend this FREE half-day Saturday event. Caregivers, friends, family, and advocates are also welcome to join us at this important educational summit.

The half-day events will bring together patients, caregivers, and expert scientists and clinicians to discuss the latest cancer research and treatment focused exclusively on immunotherapy. Each event will offer foundational education and information on immunotherapy treatment and research, patient perspectives on immunotherapy clinical trials, and cancer-specific breakout sessions. Patients can also meet with clinical trial navigators who can help connect them to immunotherapy trials for which they might be eligible. Across all the events, patients will have an opportunity to interact with scientists and clinicians who are leading the way in this important field, hear from patients who have benefited from immunotherapy, and interact with others from their community.

What Will Be Discussed?

Summit topics will include

  • Immunotherapy basics you need to know
  • Latest research update from the experts
  • Patient experience with immunotherapy
  • Clinical trials: what they are, how to access them, and patient experiences
  • Cancer specific breakout sessions

How Can You Participate?

Register today (at no cost) for the event nearest to you below. For those unable to attend in person, register for the live streaming option. Space is limited, so don’t delay.

To reach as broad an audience as possible, a live streaming option during the New York City event will also be available to individuals throughout the U.S. and abroad.

The summit series kicks-off immediately following Cancer Immunotherapy Month™, a global awareness campaign in June CRI created five years ago to call public attention to exciting breakthroughs in cancer immunotherapy and the need for more research to make this promising treatment approach an effective option for all cancer patients. By extending educational efforts beyond June, CRI will be able to reach more patients in need of critical information to help inform healthcare decisions.

“CRI has dedicated more than six decades to advancing the science of immunotherapy with the ultimate goal of harnessing our immune system’s potential to cure all cancers, and we have reached a critical point where patients are playing an even greater role in the success of these efforts,” said Jill O’Donnell-Tormey, Ph.D., CEO and director of scientific affairs at the Cancer Research Institute. “We are proud to expand our patient focus and, alongside our scientist and donor communities, facilitate patient knowledge of immunotherapy and clinical trials that will help lead to breakthroughs in cancer care.”


About the Cancer Research Institute

The Cancer Research Institute (CRI), established in 1953, is the world’s leading nonprofit organization dedicated exclusively to transforming cancer patient care by advancing scientific efforts to develop new and effective immune system-based strategies to prevent, diagnose, treat, and eventually cure all cancers. Guided by a world-renowned Scientific Advisory Council that includes three Nobel laureates and 26 members of the National Academy of Sciences, CRI has invested $344 million in support of research conducted by immunologists and tumor immunologists at the world’s leading medical centers and universities, and has contributed to many of the key scientific advances that demonstrate the potential for immunotherapy to change the face of cancer treatment. To learn more, go to cancerresearch.org.

The Advocate’s Guide to Reporting Live from Conferences and Events

Reporting live from an event is a way of engaging your followers by sending updates about an event as it occurs. It allows you to expand the reach of in-person events to provide valuable insights to those who are unable to attend in person. I believe it is part of our role as advocates to make these learnings accessible to all and live-reporting is a powerful way to do this. Furthermore as attendees, the experience of live-tweeting can enhance our own personal learning.  It requires us to listen more carefully and focus more sharply on the key details of a talk so we can better summarize what the speakers are saying in 140 characters.

Quite often, multiple vibrant discussions happen on Twitter as questions or insights are shared from other conference attendees and from those listening in online, thereby creating a parallel virtual meeting. Similarly, if a meeting has parallel sessions, live-tweeting enables conference attendees to listen in on multiple talks simultaneously. This learning can be further consolidated with an archive of tweets on which to reflect back after the event.

Live reporting tools include live-streaming using Facebook Live, Instagram Live, and Periscope (Twitter’s live-streaming app).  You can also share posts to your Facebook page and share photos and video clips via Instagram and Snapchat during the event.  Because of its ability to give people who aren’t at an event a sense of what is unfolding as it happens, live-tweeting (sending real-time updates via Twitter) is a popular way to capture the immediacy and energy of an event.

Whether organizing an event, taking part in person, or tuning in online via live-streaming, the following guidelines will help you better prepare to report live from your next conference or event.

Before The Event: Get Organized

1.Create a Custom Hashtag

If you are organizing the event, create a custom hashtag (#) and let people know in advance what it will be. Keep the following tips in mind when choosing a hashtag.

  • Make it short. Remember people only have 140 characters to tweet with and you want to leave some room for re-tweets.
  • Make it intuitive and relatable to your event but not so generic that it’s confused with something else.
  • Make it easy to remember and type for delegates. Many will be tweeting from a smart phone or tablet.
  • Make sure it isn’t already in use. You don’t want to duplicate an existing hashtag which may result in two simultaneous but very different conversations colliding on Twitter. Do a Twitter search to find out.
  • Monitor your hashtag on a regular basis to see if someone else is using it for something unrelated.
  • Register your hashtag with Symplur’s Healthcare Hashtag Project. Doing so will also allow you to access analytics after the event.

2. Create Twitter Lists of Speakers and Attendees

Creating lists on Twitter of those who are speaking and attending the event is a super way to keep track of their tweets. These lists will help you prepare in advance by making sure you know the correct names, affiliations and Twitter handles of key speakers and attendees. It is also a useful way of finding other like-minded people attending the event whom you can network with.

3. Set up Saved Searches

Use a Twitter client tool to set up a saved search of the conference hashtag and @usernames. A tool like TweetDeck or HootSuite will allow you to have multiple columns open for different Twitter searches, helping you to keep track of several sessions at once.

4. Prepare Some Tweets in Advance

Things move fast on Twitter, particularly when you are live-tweeting.  Having some pre-prepared tweets on hand helps you stay organized and feel less overwhelmed in the moment.  This is particularly helpful if you are including photos or graphics with your tweets, since image editing can be time consuming.

During The Event

5. Tag Your Tweets with the Event Hashtag

Once you start tweeting live, make sure to use the designated event hashtag.  Let your followers know the meaning of the hashtag and why you are tweeting from the conference.  Provide a link to the event page so that people have some context to what you’re tweeting about. It is good practice to let your followers know in advance that you are live tweeting so they can mute the hashtag if they aren’t interested in those tweets.

If you are organizing the event, keep an eye on unofficial hashtags. Sometimes, people tweet using hashtags that make sense to them instead of using the official hashtag. This shouldn’t be an issue if you have chosen a simple, intuitive hashtag and promoted it in advance, but it is still a good idea to an eye out for rogue hashtags and direct the users to the official one.

6. Focus on Value

The objective of live-reporting is to provide value to others, so avoid tweeting sound-bites that won’t make sense to online listeners. Be selective about the quotes or insights you choose to tweet and only post high-quality photos and videos that your followers will find interesting. No one wants to see a blurry photo of a speaker or a slide.

Strive for originality and context and make it relatable to your Twitter followers.  Tweet links to websites, studies, or other information which will enhance understanding of the topic. It’s fine to highlight your own expertise, but don’t spam. Retweet attendees and speakers who represent your mission and core values. Search for questions being asked using the event hashtag which you can answer.

7. Don’t “Binge Tweet”

Be selective, share key points only and avoid flooding your timeline with tweets. Don’t mindlessly re-tweet what everyone else is already tweeting, unless you can add a unique perspective. When live-Tweeting, one Tweet every five minutes is a good rule of thumb.

8. Give Correct Attribution

Be sure to attribute quotes to the speaker who made them, by using quotation marks. Whenever you cite a speaker, add their Twitter handle and affiliation if known (this is where those pre-prepared Twitter lists come in useful). Separate your own comments/viewpoints from the speaker’s own words.

9. Encourage Engagement

Don’t tweet in a vacuum; engage with fellow live tweeters and contribute to a larger conversation. Involve online listeners by asking questions; e.g. “Speaker X says doctors need to be more empathetic – do you agree/what do you think about this?”

10. Be Social

Don’t restrict yourself to tweeting behind a screen; take the opportunity to network and meet new people face-to-face too. Live-tweeting is a great way to meet like-minded people, so use it to organize “tweetups” at coffee and lunch breaks during the event to further the connection.

After The Event

11. Archive Your Report

After the event has finished, you can still add value by using a tool like Storify and/or Twitter Moments to archive tweets.  You could also summarise the event in a follow-up blog, embedding selected tweets to illustrate your points.

Twitter Abbreviations:

# = hashtag

@ = a way to address a Twitter user

RT = retweet, share something already tweeted

MT=modified tweet, indicates you have modified an original tweet

HT = hat tip, acknowledge or thank a source

DM = direct message

CX = correction

Live reporting from conferences and events is an important part of our advocacy work. It expands the reach of information, research, and data beyond the physical limitations of a conference or event. It also offers an opportunity to highlight your own influence and expertise.

Encourage other advocates to join you in reporting live because the more multiplicity of voices we can bring to an event, the more we can amplify our voices and be heard. As with medicine, there is both an art and science to live reporting. Follow the tips outlined in this article to take your live reporting to the next level.

Highlights from Friday 6/9 Empowered #patientchat

On Friday, June 9th, 2017, we hosted an Empowered #patientchat where we discussed health communities. A health community is group of people (personal, medical, psychological, or spiritual) on your “team” that you trust and respect for emotional support, open and honest communication, and to share information or experiences. Communities are a key component of patient advocacy and help many of us cope and grow during difficult times. We had a great turnout during the chat with numerous participants tweeting their ideas and opinions on the topic. The #patientchat community expressed how important it is to have a health community that shares common interests and knows what it is like living with a particular disease. Check out some of the highlights below.

Male Bladder Cancer Survivor…A Diary Entry

Real patient experiences shared privately at www.TreatmentDiaries.com.  Read more, share if you like or join in the conversation.  Making sure you feel less alone navigating a diagnosis is important.  Connecting you to those who can relate and provide support is what we do.

I was diagnosed with terminal systemic metastatic bladder cancer in 1991. I was given 3 to 9 months to live and sent home to get my “things” in order. The doctor recommended that I take a cruise! This was after bladder cancer was found in 1990, treated surgically twice, and I was told all was fine.

Fast forward to 2011.

I am working in Lebanon as a police trainer after serving 3 1/2 years training police in Iraq.

Since it has been a “few” years since my initial treatments, I have lost much of the details I once knew so very well. Since my cancer bout, I have lost my father and brother to cancer, among many friends and other family members. Only God knows who dies and who lives but I know what the doctors did to me that the others didn’t have the good fortune of having done to them and I credit that to my good health, cancer free status and living life large. It was excellent doctors, with excellent medications guided by Gods hand and the experimental High Dose chemotherapy that saved my life. It took me six months to fight the disease, but after that it was all downhill. I went back to work as a deputy sheriff and completed another 10 years for a 27-year retirement. I worked a couple little jobs before going to Iraq as an International Police Instructor and I have never slowed down.

I know that the decisions facing ever cancer warrior are daunting. I know that had I been given the option of removing my bladder, I don’t know what decision I would have made at the time. However, being fortunate enough to have hindsight, it would have been the best course of action for me. I wasn’t given that option and was told after having undergone surgery twice and a session of mild chemo each time, I was cancer free and sent on my way. We of course must believe our doctors and want to believe we are cancer free, but thinking back…. my bladder was completely full of cancer although “they said” it did not permeate the bladder wall. Obviously, it had or did, and circulated throughout my body. I had bladder cancer on my lung, behind my heart, inside my left femur as well as other places. In fact, that was how I learned that the cancer was systemic. When the cancer was flowing systemically, I felt no pain but when it permeated my femur and ate away about 4″ just above the knee, I had pain. I didn’t relate it to cancer in the beginning and my doctor fed me pain pills until I could no longer tolerate the pain. That’s when I learned that I was terminal and the rest is now history.

I hear lots of people saying to listen to their doctors, do what their doctors say, but I am the first to caution about putting too much faith in your doctors. Consider what they know, but it’s your life, not there’s and if it doesn’t make sense, then it’s your duty to research and engage in frank open and meaningful dialogue with your doctors. Life goes on and it is a minor inconvenience to give up your bladder compared to the alternative.

My prayers are with all of you fighting cancer. It is a nasty terrible disease but NEVER SURRENDER and hit it HARD. This is not a time to handle this disease delicately. I underwent three sessions of High Dose chemotherapy. It was difficult, and experimental, but it sure beats living for 3 to 9 months even if I had taken the cruise….and by the way…in early 2006 I took a 3-week cruise to Hawaii anyway!

ASCO 2017 Roundtable: Progress in Lung Cancer on Multiple Fronts

At the recent American Society of Clinical Oncology meeting (ASCO), Dr. David Carbone, Director of the James Thoracic Center, James Cancer Hospital and Solove Research Institute at Ohio State University Comprehensive Cancer Center and Dr. George Simon, Professor in the Department of Thoracic/Head and Neck Oncology at The University of Texas MD Anderson Cancer Center, share highlights from the meeting including what they call “progress on multiple fronts in lung cancer.” Dr. Carbone discusses how patients should demand a genetic workup on their tumor and his free genetic testing initiative at Ohio State. Dr. Simon shares how some immunotherapy and chemotherapy combinations are showing promise and how small cell lung cancer patients could potentially also benefit. Watch the video below to hear from two lung cancer experts.

ASCO 2017 Roundtable: Progress in Lung Cancer on Multiple Fronts from Patient Empowerment Network on Vimeo.

Open to Options® – A Cancer Support Community Resource

The Cancer Support Community has created a decision support counseling program called Open to Options® that can help you prepare for an appointment in which you will be making a treatment decision. The program is available in English or Spanish for people with any stage of cancer.

The service can help you get the most out of your doctor’s visit and help you talk more openly with your health care team about the things that really matter to you in your cancer treatment. In a brief one-hour session, an Open to Options® Specialist can help you develop a personal list of questions and concerns that will help you and your doctor explore your situation and develop the best treatment option for you.

We had the chance to talk with CSC’s research manager, Jamese Johnson, about Open to Options®, and this is what she had to say.

Tell me about Open to Options® and what unmet need does it serve?

Making a decision about cancer treatment can be an overwhelming experience for many people. Important decisions need to be made about treatment for new or recurrent cancer as well as ending treatment. Sometimes it is hard to know what questions to ask the doctor. One proven strategy for getting the most out of your visit is to be as prepared as possible. Having a written list of questions can help you feel more organized and comfortable in asking the questions you need to have answered as you work together with your doctor to make a decision about which treatment is right for you.

As you look at all the treatment options with your doctor and your family, you will need to determine what you can realistically expect from treatment. Talk with your doctor to better understand your type and stage of cancer as well as the best goal of treatment for you. A goal of treatment may be cure, slowing or controlling tumor growth, or extending your life while maintaining quality of life. Some cancer treatments such as surgery, chemotherapy and radiation, can have difficult side effects. It’s important for you to weigh the benefits and the challenges, and make a decision that is best for you.

The Cancer Support Community has a decision support counseling program called Open to Options® that can help you prepare for an appointment in which you will be making a treatment decision. The program is available in English or Spanish for people with any stage of cancer.

Who is this service for- patients, care partners, and/or families? How would they use it?

This service is primarily meant for patients who are considering treatment options, but family members can be included in the Open to Options® session.

How can they benefit from using Open to Options®?

The service can help you get the most out of your doctor’s visit and help you talk more openly with your health care team about the things that really matter to you in your cancer treatment. In a brief 30 minute to one-hour session, an Open to Options® Specialist can help you develop a personal list of questions and concerns that will help you and your doctor explore your situation and develop the best treatment option for you. Open to Options® has been shown to reduce distress, increase confidence in asking questions, reduce decision regret and lead to more productive consultations between the patient and the health care team, including important conversations about clinical trials.

In addition to Open to Options®, Cancer Support Community has also created Let’s Talk Treatment Options. How can patients use this resource?

Building on the success of the Cancer Support Community’s treatment decision counseling program, Open to Options®, Let’s Talk Treatment Options provides an interactive tutorial to help cancer patients build a personalized question list that outlines important questions, concerns and important goals and priorities related to treatment.

How can patients and their families learn more and get help in using the tools?

Open to Options® is available through our Cancer Support Community affiliates. Find an affiliate near you. If you are unable to find a program near you, call our Toll-Free Cancer Support Helpline, 1-888-793-9355, to speak to a helpline counselor about the program.

To learn more about Let’s Talk Treatment Options, our online tool, please check out http://www.talkingtreatment.org/

ASCO 2017: Ask The Prostate Cancer Experts

From one of the largest educational and scientific events in the oncology community, we had the chance to sit down with a few prostate cancer experts to hear the latest news coming out of the ASCO 2017 conference. The panel included the following experts:

  • Philip Kantoff, MD, Chair, Department of Medicine, Memorial Sloan Kettering Cancer Center
  • Daniel Petrylak, MD, Director, Genitourinary Oncology, Co-Director, Signal Transduction Research Program, Yale University Cancer Center
  • Sumit Subudhi, MD, Assistant Professor, Department of Genitourinary Medical Oncology, Division of CancerMedicine, The University of Texas MD Anderson Cancer Center
  • Darryl Mitteldorf, LCSW, Executive Director, Malecare

The panel covers a variety of headline topics such as treatment options, prognostic factors, genetic marker, clinical trials, and more. Check out the full video to below to hear from four prostate cancer experts.

ASCO 2017: Ask The Prostate Cancer Experts from Patient Empowerment Network on Vimeo.

What’s The Fix? – Free Conference

What’s The Fix? is a conference that’s been launched as part of #WhatTheHealthCare – people kicking the hell out of health care and coming together to commit to change and is brought to you by HealthSparq.

What Is It?

A free, one-day online and in-person conference on June 14, 2017 in Cambia Grove, Seattle dedicated to those working from the outside in to change health care for the better – for everyone! You’ll hear from an amazing range of speakers including:

  • A college student who leveraged YouTube to call out a hospital’s terrible patient experience
  • A mom devoted to finding help for her sick child when she was told it wasn’t possible
  • Educators from medical schools who are breaking the mold for the future of health care

That’s not all – they’ll work hard to connect everyone who attends online and in-person to create lasting change.

Who Should Attend?

Anyone with an interest in fixing health care is welcome to attend either virtually or in-person! They believe their conference speakers and panelists will relate to everyone, but those who many find the most inspiration are people already demanding change: parents, caregivers, patients, patient advocate, AND those who can commit to making changes based on what they hear at the event: providers, health system professionals, insurance executives and others inside the health care system. 

What Will You Gain?

An understand of how a single person can drive change in health care, real tools to make positive changes and inspiration to start your own change movement! You’ll also connect with an amazing community of fellow attendees that will stay engaged into the future through continued events, a LinkedIn group, and Tweet chats!


Be sure to join our Empowered #patientchat – Finding Your Tribe this Friday, June 9th on Twitter at 1pm ET where we’ll discuss health communities or tribes with special guest HealthSparq.

National Cancer Survivors Day 2017 is Sunday, June 4th

On Sunday, June 4, 2017, tens of thousands of people across the globe will gather in their local communities to honor cancer survivors and to raise awareness of the ongoing challenges of cancer survivorship. This day will mark the 30th annual National Cancer Survivors Day. The day is meant to “demonstrate that life after a cancer diagnosis can be a reality”.

National Cancer Survivors Day presents an opportunity for all people living with a history of cancer to connect with each other, celebrate milestones, and recognize those who have supported them along the way. It is also a day to draw attention to the ongoing challenges of cancer survivorship with the aim of promoting more resources, research, and survivor-friendly legislation to improve cancer survivors’ quality of life.

Save the date, and make a plan to celebrate National Cancer Survivors Day with the cancer survivors in your community on Sunday, June 4, 2017.

Anyone can host a National Cancer Survivors Day celebration. If you want to host an NCSD 2017 event in your city, be sure to sign up for National Cancer Survivors Day eNews. Then you’ll be among the first to receive NCSD 2017 registration information and planning materials once they are released.


Source: http://www.ncsd.org/

Press Release

Patient Empowerment Network to acquire

Empowered Patient Chat (#patientchat) series

June 1, 2017… Patient Empowerment Network (PEN) is pleased to announce the acquisition of the Empowered Patient Chat (#patientchat) series from Los Angeles digital health startup Intake.me. Empowered Patient Chats are hosted on Twitter by @patientchat every other Friday at 10:00 am Pacific / 1:00 pm Eastern. During the popular tweetchat, patients, care partners, advocates, and health care providers come together to learn from each other and discuss topics of interest to empowered patients.

A disease diagnosis can be overwhelming for patients and family members. Patients are suddenly buried in information and faced with difficult decisions. Living with a disease or other chronic condition is challenging for patients, their families, and friends. The aim of the #patientchat is to engage and empower patients by connecting them with each other, sharing resources and inspiration across conditions, and exploring important topics of interest to those in healthcare who want to elevate the patient voice in all healthcare matters. The community and series are guided by a belief in keeping the patient perspective at the forefront of all healthcare interactions, the strength of peer support, and the power of shared decision making in healthcare.

Intake.me launched the initiative in 2013 and most recently co-hosted an hour-long #patientchat that gained 5.4 million tweet impressions with 143 participants.  Past #patientchat guests have included Tal Givoly of Medivizor, Martine Ehrenclou who authored The Take-Charge Patient, Dr. Rob Lamberts, and patient advocates from different patient communities such as Alan Brewington @abrewi3010, Melissa Adams VanHouten @melissarvh, Liza Bernstein @itsthebunk and Richard Kreis @kreisr1. A variety of patient empowerment topics have been covered including: Coordinating Your Care, Building Your Healthcare Team, Accessing Your Medical Records, Caregiving, Participating in Research, Doctor-Patient Communication, Finding Support, Mental Health, and Integrative Medicine.

Intake.me’s Co-Founder and CEO, Darla Brown, shared, “Since its inception in 2013, the Empowered Patient Chats have grown from a few patient advocates tweeting and sharing ideas about the patient perspective to one of the most popular and influential tweetchats for patients.  Our mission has been to amplify the patient voice, connect advocates, caregivers, and healthcare providers, and host a safe space for meaningful dialogue to propel the patient experience forward and to let patients know they are not alone in their healthcare experience.”

“The Empowered Patient Chat community is a strong, supportive community and we are confident the Patient Empowerment Network will continue to host guests and topics of interest to all patients. Our work with the Patient Empowerment Network on ePatient101.com and other joint projects gives us great confidence in our shared mission of patient empowerment and education.”

“The participants make #patientchat great. It is an honor and a privilege to nurture the incredible space Intake.me created for thoughtful discussion, where diverse perspectives enhance and build the community,” said Christina Lizaso, Community Manager for Intake.me, who will remain involved during the transition. “I’m grateful and excited for the future of #patientchat and I look forward to participating.”

“We are thrilled to take up the reins of the Empowered Patient Chat. Intake.me has done a wonderful job creating and sustaining this initiative, and we look forward to continuing this important work. PEN aims to educate and empower patients so they can make the best and most informed decisions about their health. We can’t think of a better way to exemplify this than by carrying #patientchat forward,” said Joan Justice, Executive Director of Patient Empowerment Network.

###

About Patient Empowerment Network (PEN)
PEN’s mission is to fortify cancer patients and care partners globally with knowledge and tools, boosting their confidence and putting them in control of their healthcare journey and assisting them to get the state-of-the-art, personalized care they deserve. For more information, please visit our website http://www.powerfulpatients.org/

About Intake.me
Founded in 2013, Intake.me is an innovative digital health startup located in Los Angeles focused on amplifying the patient voice in their healthcare encounters. Founded by Emily Lu, MD, and Darla Brown, in addition to the Empowered Patient Chat series and the Intake.me digital health application, the company has focused on creating educational content for patients and caregivers through its online health academy ePatient101.com. Recent courses created by Intake.me on the platform have included Empowered Patient 101, Caregiver 101, and Chronic Lymphocytic Leukemia 101.

For Media Inquiries please contact:
Patient Empowerment Network
Kara Rayburn
Director of Digital Communications
kara@powerfulpatients.org

 

Spotlight on ASCO 2017

The American Society of Clinical Oncology hosts an annual meeting to bring together more than 30,000 oncology professionals from around the world. This year’s meeting will take place from June 2 – June 6, 2017 in Chicago, Illinois at McCormick Place. Educational sessions feature world-renowned faculty discussing state-of-the-art treatment modalities, new therapies, and ongoing controversies in the field. Science sessions present the latest ground-breaking research in oral and poster format.

You’ll meet friends and make connections, and bring back new ideas to your practices and hospitals. Take the time to familiarize yourself with the different opportunities the Annual Meeting offers. Mark key dates on your calendar, find out about networking opportunities, and learn about the committees that develop the session content you’ll discover onsite.

 

Abstracts

Program

Exhibits

Attendee Resources

 

During the conference you can follow along with the hashtag #ASCO17 or subscribe to follow their featured voices for updates and real-time insights. We will also be tweeting the patients’ perspective during #ASCO17. Follow us on Twitter to experience it through the eyes of patients.

WEGO Health: Helping Others and Transforming Healthcare

WEGO Health:

100k+ Patient Advocates, Influencers & Experts –

Helping Others and Transforming Healthcare

Elevating the patient voice

With a mission-driven purpose, WEGO Health has supported its Patient Leader network’s advocacy efforts for over 10 years now. With more than 100k patient advocates, influencers and experts within its network, the company gives its members a communal place to elevate their voices.

Members of the network are provided educational resources, leader-to-leader connections, speaking engagements, rewards for paid projects, and community recognition through the annual WEGO Health Awards.

Not only can WEGO Health Patient Leaders connect with each other and tap into patient power, but members can also connect and collaborate with healthcare companies of all types across the entire industry. This gives the network a real chance at transforming healthcare from the inside out – and in a variety of ways

 

Connecting with healthcare companies across the industry

Take for example a market research company looking to uncover insights from a target condition area. WEGO Health’s Patient Leader network can recruit participants that not only meet the research criteria, but it can also identify, qualify and recruit those that have a vast understanding of the condition and a broad online reach.

Reaching influential Patient Leaders through an otherwise private network is what draws the most sincere and authentic findings for these types of research projects. WEGO Health conducted a study among 433 patients across seven conditions and found that 75% of respondents share through private means, such as member-only groups, private phone calls, emails and Facebook messaging.

There are many more use cases where Patient Leaders and healthcare companies have collaborated, to make a true impact on improving the healthcare consumer experience:

  • Product design and development
  • Usability testing
  • Online community building
  • Speaking engagements
  • Clinical trial recruitment
  • App testing
  • Social media campaigns
  • Influencer marketing
  • Patient advisory board
  • Health data tracking
  • Content creation

 

Quality of vetted WEGO Health Patient Leaders

The quality of Patient Leaders is vastly more skilled and knowledgeable than the average patient. They are keen on navigating the healthcare system and can speak on behalf of their online patient communities. Patients tell the “what” whereas Patient Leaders tell the “why” and “how.”

A typical Patient Leader in the WEGO Health network reaches an average of 15k people monthly per member. More stats on WEGO Health’s Patient Leader network:

  • 150+ distinct health conditions and topics covered
  • Members average 5-6 different online health communities and social channels
  • 74% are members of multiple online health communities
  • Members are 5x more likely to contribute daily
  • 82% agree: “I go online to raise awareness of health issues”

 

Collaborating with healthcare companies large and small

WEGO Health offers healthcare companies the chance to connect with its Patient Leader network through both their full-service and self-service offerings:

  • Full-service: WEGO Health’s Solutions team offers end-to-end project management for pharmaceutical companies. Projects cover market research and influencer marketing tactics.
  • Self-service: WEGO Health Experts is the first digital matching platform that provides healthcare companies on-demand access to a diverse network of vetted freelance Patient Experts. Patient Experts are especially unique because they have online influence, professional skills and patient experience.

When healthcare companies collaborate with Patient Leaders and tap into patient power, the results can be profound.

Through WEGO Health, companies can connect with a trusted network of over 100k Patient Experts, leaders, influencers and advocates with patient power: broad online reach and deep understanding of healthcare consumerism.

 

About WEGO Health

WEGO Health is a mission-driven company connecting healthcare with the experience, skills and insights of patient leaders. They are the world’s largest network of patient leaders, working across virtually all health conditions and topics.

WEGO Health’s network collaborates with pharmaceutical companies, startups, life sciences companies, non-profits, agencies, government and all types of organizations across healthcare. WEGO Health offers enterprise and on-demand solutions that allow organizations to leverage patient experience and expertise in the design, development and promotion of their products and services.

Milton Marks Family Camp – A Respite from Brain Cancer

For the past three autumns, a small gathering has taken place in the wild beauty of Sonoma County, California.  There, doctors, nurses, musicians, therapists, and body workers, among others, have convened to offer support and respite to a unique group of people – families living with brain cancer.

But unlike many specialized family camps that focus on a child with cancer, this one flips that model – offering support to a family with a parent with cancer.  It is the only one of its kind.

The diagnosis of brain cancer is a catastrophic event in the life of a family.  The brain is the source of a person’s ability to communicate and interact.  Certainly a breast or prostate cancer diagnosis can be devastating for an individual and their family.  But the patient’s essential personality can remain intact throughout the grueling treatments.  That may not be the case in glioblastoma, the most virulent and fast-moving type of brain cancer.  And it is incurable.

Brain cancer can strike people in the prime of their life, when their children are young.  During the months of treatment, a patient’s ability to speak, reason, laugh, or interact may be affected adversely.  The sight of dad or mom deteriorating physically and mentally can cause immense suffering for the family.

In 2010, Abby Marks found herself living this life with her husband Milton Marks and their three young sons.  After Milton’s death in 2012, Abby came up with the idea of offering a place of respite and connection for families experiencing the impact of brain cancer.  Working with the University of California Medical Center’s (UCSF) Neuro-Oncology department, where Milton had received treatment and care, the camp launched in 2014.

The camp’s mission is to provide connection, community, and fun!  It is a camp, after all.  There are sing-a-longs at the campfire, art projects, music, ropes courses, swimming, and more.  The UCSF doctors and nurses that tend to these families can also attend, adding a new dimension to the patient/medical professional relationship.  There are therapists and body workers available, as well as a professional photographer to document this island of respite in the long haul of brain cancer.  Families leave with sense of connection to others living this unique journey.

The Camp is now gearing up for its fourth year.  A few families are returning.  Most are new.  All are looking forward to spending three days being cared for, understood, and encouraged as they navigate this difficult journey.

[Disclosure:  Amy Gray is the operations manager for the Milton Marks Neuro-Oncology Family Camp]

Sources:

https://www.miltonmarksfamilycamp.org/

https://issuu.com/ibta-org/docs/ibta-2016/30

http://meetinglibrary.asco.org/content/173075-180

How the Federal Government Can Improve Clinical Trials Awareness

Editor’s Note: This post was created by the Coalition for Clinical Trial Awareness (CCTA) to highlight the Clinical Trials Awareness Week Policy Roundtable that they hosted on May 3, 2017.


Patients are eager for new and better treatments, yet more than one-third of clinical trials do not meet their enrollment goals. Finding solutions to this challenge served as the focus of the third annual Clinical Trials Awareness Week, held May 1-5, 2017. At a May 3 policy roundtable held at the United States Capitol, diverse stakeholders explored how the federal government can help to raise clinical trials awareness. Participants included:

  • David Charles, MD Steering Committee Chairman, Coalition for Clinical Trials Awareness
  • Sara Chang, Director of Policy & Advocacy, Research America
  • Renata Louwers, Patient Advocate & Clinical Trials Writer
  • Jonca Bull, MD Assistant Commissioner, FDA Office of Minority Health

The event also featured U.S. Representative Diana Degette, a health policy leader and sponsor of the 21st Century Cures Act. The event’s discussion produced four key concepts for improving clinical trials awareness.

Congress Should Act to Raise Clinical Trials Awareness

In an April 2017 letter to the Senate Committee on Health, Education, Labor, and Pensions and the House Committee on Energy and Commerce, CCTA encouraged members to use the Prescription Drug User Fee Act reauthorization process to:

Learn more about Clinical Trials Awareness Week 2017 at www.CCTAwareness.org.