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The Best of 2015

best of 2015


 

As 2015 comes to an end, we would like to take a moment to highlight a few of our most popular posts and to thank the people who contributed to the popularity of these posts. We cannot thank the authors enough that have contributed, such as Marie Ennis-O’Connor, Tori Tomalia, Cindy Chmielewski, Dr. Michael Thompson, Edward Leigh, and Deana Hendrickson. Your efforts to Patient Empowerment Network are greatly appreciated.

best of people

From right to left: Edward Leigh, Tori Tomalia, Cindy Chmielewski, Marie Ennis-O’Connor, and Dr. Michael Thompson

PEN would also like to thank our sponsor AstraZeneca and our partner LUNGevity for their support in creating these posts.logos


 

Most Popular Posts of 2015

1.Virtual Patient Communities

Virtual patient communities offer support and information to cancer patients.

2. The Stigma of Lung Cancer

Tori Tomalia, a lung cancer patient explains the stigma of lung cancer, and that it doesn’t happen to only those who smoke.

3. Can Digital Wearables Help in Clinical Trials?

When applied to clinical trials, wearable technology is a potentially powerful research tool to gather clinical data in real-time and provides remote patient monitoring.

4. Clinical Trials 2.0: Reinventing Research For the Social Age

Clinical research is changing. No longer the sole preserve of clinicians and researchers, the Internet and new digital technologies are reinventing the way in which patients take part in the clinical trials process.

5. Cindy Chmielewski Talks About Clinical Trials

Carol Preston talks to myeloma patient Cindy Chmielewski about her role in advocating for clinical trials. Cindy explains how her cancer journey took her to self-advocacy and advocating for others in her community through social media.

6. Why So Few Adults in Clinical Trials

Dr. Michael Thompson discusses with Carol Preston the reasons behind some patients apprehensiveness towards clinical trials.

7. Spotlight on: LUNGevity – The Meaning of Lung Cancer Awareness Month

What can you do in support of Lung Cancer Awareness Month

8. Activating a Community of People Living With Lung Cancer

LVNG With is a community for people living with a lung cancer diagnosis. These people share their story and help inspire others like them.

9. How to Develop a Personal Medical Resume

Edward Leigh, Founder and Director of The Center for Healthcare Communication, shares his tips for creating a “medical résumé” to ensure great healthcare experiences.

10. Connecting to Cancer Patients Online

In the Empowering Lung Cancer Patients Town Meeting, Deana Hendrickson talks about how important it is to connect with other patients and advocates online.


 

Also, be sure to check out

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The Clinical Trial Toolkit is a resource to help you find clinical trials and financial assistance. You can view our Patients Helping Patients Blog for various aspects and perspectives of clinical trials. Also, don’t miss our Videos of patients, caregivers, and healthcare professionals!

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#ASH15 Hosts Discussion on Social Media

At the recent American Society of Hematology annual meeting, Joseph Mikhael, MD, MEd, FRCPC (@jmikhaelmd) hosted a panel discussion on the importance of social media . The panel included Michael A. Thompson, MD PhD (@MTMDPhD), Cindy Chmielewski, BA (@MyelomaTeacher),  Navheet S Majhail, MD, MS, (@BldCancerDoc), Laura C. Michaelis, MD, (@lauracmichaelis), Jeff Szer, MB, BS, FRACP, (@marrow), and Amber M. Yates, MD, (@sicklecelldoc).

The panel discussed how social media can be used for research, education, patient information and patient advocacy. The great advantage of using social media is that it is not demanding and its use is flexible. The individual can tailor it to suit his own needs.

The panel focused on the use of twitter and the benefits it provides in the healthcare industry. Twitter is an unique way to share information quickly, rapidly, in real time, and across borders.During the panel discussion, the twitter hashtag for the session, #ASHSM was trending on twitter and the twitter stream was running strong.

One panel member, Cindy Chmielewski had this to say about social media and twitter:

“Social Media is a tool in medicine that shouldn’t be overlooked.  It’s a source of education.  Social media has helped me evolve from a passive bystander to an active partner on my healthcare team.  I use social media to share resources and important information, promote myeloma awareness, advocate for cancer friendly public policies, form communities, but most importantly to learn.
Twitter is one of my classrooms and doctors who tweet are my teachers. The power of Twitter should not be underestimated.  If you educate one patient advocate you can reach thousands of other patients. Studies show that educated, empowered patients have the best possible outcomes. Isn’t that what we all want?  It’s a win-win situation.” 
Watch the video below to learn more about this important panel discussion on the use of social media in medicine.

Using Social Media to Inform Patients in Real Time

Interview With Dr. Michael Thompson (@MTMDPhD), Medical Director, Early Phase Cancer Research Program, University of Wisconsin

Alongside interviewer Carol Preston, Dr. Michael Thompson explores some of the new and exciting technology utilized in healthcare and the benefits it presents. To make medical meetings and conferences accessible to all patients, real time feeds are used to “attend” meetings from around the world. The types of feeds available to patients include twitter feeds, blog posts, and even live streams with apps Meerkat and Periscope. This allows patients a valuable insight into what is happening at the national level and makes information easier to find when researching their disease. Watch the clip below as Dr. Thompson explains more fully:

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Using Social Media to Inform Patients in Real Time from Patient Empowerment Network on Vimeo.

Knocking Down Barriers to Accrual Using Social Media

Social Media uses powerful tools that can be used to dispel myths about clinical trials and to engage patients.

(Editor’s Note: Cindy Chmielewski, a myeloma patient, member of the PEN Advisory Board, and longtime patient advocate and teacher, presented a poster exhibit at the recent 2015 AACR conference on the use of social media for clinical trial accrual. Below is the poster description and an image of the poster)

Multiple Myeloma is an INCURABLE cancer of plasma cells. Many researchers feel that a cure can be found in the near future if clinical trials which test their hypotheses are properly designed, fully enrolled and completed in a timely fashion. As a myeloma patient it is frustrating to hear that less than 5 % percent of adult cancer patients participate in clinical trials and that 24.4% of cancer clinical trials close early because they fail to complete enrollment. As an independent patient advocate I have made it my mission to use Social Media to knock down barriers to trial accrual.  Social Media provides powerful tools such as online patient communities, Twitter, podcasts, Facebook, patient blogs, and YouTube that can be used to dispel myths about clinical trials, excite the population about the successes of recent research and educate potential participants and physicians about clinical trial options.  According to the Center for Information and Study on Clinical Research Participation (CISCRP) an overwhelming majority of people (77%), say that they would consider getting involved in an appropriate clinical research study if asked. Since many doctors aren’t asking patients to participate in clinical trials patients need to be educated and empowered to question their doctors about ALL their treatment options, including trial participation. Social Media has helped me evolve from a passive by-stander in my medical care to an engaged partner and it is my mission to use it to help fellow patients.

Social Media and Clinical Trial Accrual

How Chronic Cancer Patients Use Social Media to Stay Informed

New research and treatment has made many cancers that were previously terminal now chronic. Patients live with the condition and daily go about their lives. But often, they do have to manage their cancer and often they worry about reoccurrence, side effects from medication and progression of the disease.

The chronic patient is often “forgotten”.  They are under treatment, doing (fairly) well, and doctors and the media are focusing on the more urgent issue of treating the acute or advanced cancer patient.

Chronic cancer patients want to know and understand their disease.  They would like a cure and they seek out the newest and latest information online looking for answers on treatment options, and how to best live with their disease.

Where can chronic cancer patients go for help online?

There are numerous sites for help with living with chronic cancer.  Many are disease-specific, offering news about new treatments or research.  There are several good video channels that offer interviews with cancer specialists about treatments, clinical trials or other information on specific cancers.  There are patient support networks and numerous Facebook pages that offer patients the opportunity to connect with other patients and post discussions about all aspects of their disease.

There is an overwhelming amount of information online and often, it is difficult to sift through all of it.

I have listed a few of these sites below.  In no way is this a comprehensive list, but I have asked several cancer patients and opinion leaders for their input and have added their thoughts to the list.

Resources for Chronic Cancer Patients

Cancer.gov

CLL Global

Patient Power

CanCare

Oncology Tube

National CML Society

Leukemia Lymphoma Society

Patients Against Lymphoma

CLL Topics

Institute for Myeloma and Bone Cancer Research

The Myeloma Crowd

International Myeloma Foundation

 

Facebook groups

Essential Thrombocythemia

Myeloproliferative Neoplasms

Polycythemia Vera & Budd-chiari Syndrome Awareness

 MPN Forum

Myeloproliferative Neoplasms 

 

Patient Opinion Leaders and Advocates

Another great way to obtain information on chronic cancers is to follow patient opinion leaders (POLs) on social media channels.  These patients have been living with their specific cancer (or cancers) for some time and have spoken about their experience (often publically), written books and articles about it, formed groups or even organizations or companies around chronic cancer.  They have Facebook pages, tweetchats, blogs, video programs and websites.  They organize patient meetings, interviews with physician specialists and events around their illness.  They have the experience and know-how to conduct excellent informational programs for other patients; they are a wonderful source of information.

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Andrew Schorr, @Andrew Schorr, founder of PatientPower and author of the Web Savvy Patient has been in remission from Chronic Lymphocytic Leukemia since 2001.  In 2012, he was diagnosed with a second cancer, myelofibrosis.  Andrew now leads a normal life, thanks to a new targeted oral therapy.  He has been a leader in patient education since 1984 and is considered to be one of the most respected and reputable Patient Opinion Leaders.

When I asked Andrew why he did what he did, he responded,

“I feel a responsibility to try to help other patients do better because of something I’ve learned through my experience. While others might wish to protect their privacy I “go public” with the hope to ease the journey of other cancer patients like myself. It helps me feel I am doing something significant and helps all of us know we are not alone, but rather a real community.”

Patient Advocates also help other patients by coaching them through living well and coping with their disease.  They use social media to spread the word about their illness and educate patients around the world.

I also spoke with Cindy Chmielewski, @MyelomaTeacher, a former elementary school teacher and a multiple myeloma patient that is now a patient advocate for the disease.  Cindy is on the Board of Directors of the Philadelphia Multiple Myeloma Support where she is in charge of the Patient Education Library and Patient Advocacy. – She speaks at support groups, tweets about myeloma, and participates in several online support communities.

When asked why she did what she did, Cindy answered,

“Everyone needs a purpose in life.  Being a teacher for 28 years before my medical retirement I knew my purpose in life was to be a facilitator of information. When I regained my strength after my Stem Cell Transplant opportunities began to fall into my lap. I had some very good mentors when I was newly diagnosed. I am very grateful that I able to pay it forward. Sharing what I learn gives my cancer experience a purpose. Using social media allows me to reach a larger audience.  I am still a teacher, but now I teach a new subject with different students. We are all in this together and we can gain strength from one another. My life once again has meaning”. 

The Power of Social Media

Social media has drastically changed the idea of patient empowerment. Patients all over the world can connect, educate themselves and their family members, network, and instruct and educate others. And they are doing just that. The day of the passive patient is over: Welcome, empowered patient!

 

Patient Power!

This post was originally published on HealthWorks Collective