17 Tips For Patient Engagement

To kick off 2017 and new year of patient engagement and empowerment, we are showcasing 17 tips from patients, caregivers, and leaders throughout the industry. A special thanks to our partner, The Conference Forum and their Patients as Partners US program, for helping to obtain a few of these excellent testimonials. Their tips and advice are as follows.


1. Jack Aiello

“Patients and their care partners need to get educated about their disease and become their own best patient advocates.  The internet can be a great resource where disease specialists create videos on topics from disease overview to treatments and side effects.  And by getting 2nd and 3rd opinions from disease specialists, you put yourself in the best possible position to make good decisions with your doctor.”

2. Randy Broad

One very important aspect of treatment, especially at the time of diagnosis, is to understand what treatment options your oncology team is recommending and why.  Many providers have ‘pathways’ which determine how a specific cancer (and stage) be treated.  Be sure to fully understand what’s behind and underneath this directive.  Many times it can be determined based upon cost, not best options currently available.”

3. Matthew Zachary

“Patients have the right to survive with dignity and quality and we deserve to be treated age-appropriately. More so, they also have the right to be made aware of the relevant support resources they are entitled to so they can get busy living. This is what it means to face cancer.”

4. Cindy Chmielewski

“Knowledge is power. Educated patients are empowered. Educate yourself. Join a support community either in-person or online; follow the #mmsm hashtag on Twitter; subscribe to disease appropriate YouTube channels, listen to webcasts/podcasts presented by patient advocacy organizations and engage in meaningful discussions with your healthcare team.

Be a partner in your care. “

5. Jennifer Ahlstrom

“Don’t be afraid to speak up. Patients who ask their doctor questions, ask for explanations and treatment rationales get better outcomes. Myeloma is a very complicated disease and there are now an incredible number of treatment options available for patients. If you don’t feel comfortable asking your doctor questions, it’s time to find another doctor, preferably a myeloma specialist who treats hundreds of myeloma patients.”

6. Marie Ennis-O’Connor

“Becoming an empowered patient means taking personal responsibility for your health. You engage with health care providers and systems in ways that are proactive, rather than reactive. You take positive steps in the direction of the care that is right for you.”

7. Scott Riccio

“Remember that YOU get to define value for your own care.  Nobody can read your mind, though, so you have to share what you value, how it impacts you, and what tradeoffs you are willing to make to get the outcomes YOU want.”

8. Andrew Schorr

“Ask your doctor questions! How can we be sure my diagnosis is 100% accurate? How much experience do you have treating this illness? Are there other tests that can help me get the most on-target treatment for my case? What are all the approved medicines for my situation? Why would you recommend one over another? What clinical trials could be right for me, whether or not you have them at this clinic/hospital?”

9. Esther Schorr

“As a care partner, it really is a time to be hopeful as the advances in cancer treatment are moving very, very fast. As it is for the patient you love, it is key to stay educated about advances in treatment options that might be right, and be actively involved in discussions about genetic testing and clinical trials.  It’s also critical to lean on your personal community…friends, family, counselors…in order to “keep it in the road” and retain realistic optimism. As more and more survivors and care partners reach out to each other and share stories, we all gain insights and perspective – and you will hopefully feel supported along the cancer journey. We are all in it together, and we are here for each other.”

10. Amy Ohm

“Caregivers need self-care to effectively care for a loved one – always make sure to put on your oxygen mask first! It can be incredibly challenging to focus on ones health with the daily demands of care-giving. Make 2017 the year you assess your own health and strive to reduce daily stress. Connecting privately with those who relate and to share experience to learn from others can help. We want you to be health in the New Year!”

11. David Wallace

“It is imperative that you gain a solid understanding of your disease so you can become your own advocate.  Connecting with other knowledgeable patients via social media or online forums to learn what has worked or failed to work for them is a good start.  Understand the treatment options that are available to you.  See an MPN specialist who will work with your local hematologist.  If you are not being treated with care and respect, don’t hesitate to seek a 2nd opinion and change doctors until you receive the level of care you deserve.”

12. Carol Preston

“NEVER hesitate to ask questions.  In fact, write down your questions in advance, take them with you to your appointment and go through them one by one.  Be sure to write down the answers (or get your care partner to take notes) as a short pencil is far better than a long memory.  Better yet, record the QA on your smart phone so that you can listen later to the answers as you’ll retain only about 10% of what the doc tells you during your appointment.”

 13. T.J. Sharpe

“Patients and caregivers can be better engaged in 2017 by reaching out to their patient community and actively becoming involved in the support of fellow patients through person to person and group interaction.  Patients and their caregivers can raise the bar for everyone involved in healthcare so that the expectations of patients as a partner in their care is not just accepted, but standard and demanded by patients.”

14. Marilyn Metcalf

“Set our goals together in the New Year, and then work together on our plans and make them happen.”

15. Durhane Wong-Rieger

“Patients are basically a heterogeneous lot, coming with all types of experiences and talents, as well as desires and needs.  Some patients want to have a voice in high-level  policy and system decision-making; some want to extend a personal hand of support.  The more diverse the channels and opportunities for involvement, the more patients can take active and meaningful roles. Every person naturally wants to feel respected and empowered so it doesn’t take much to engage patients: provide a portal, support, information, acknowledgement and most important action.”

16. Deb Maskens

“Patients and caregivers get information from a wide variety of sources, from personal anecdote to television advertising to medical journals. Empowerment and engagement for patients and caregivers in 2017 needs to start by providing them with more information that is trusted, balanced, and objective. Information is power. Let’s give patients and caregivers the information they need as the first step for them to be empowered and engaged in treatment decisions that are right for them as individuals.”

17. Jeff Folloder

“Resource management.  I’m not talking about managing the funds to pay for treatment or care.  I’m talking about managing you.  I got great advice from a lady in a waiting room at MD Anderson.  She told me that every day we wake up with a bucket of energy that we can spend on anything we want and it’s gone at the end of the day.  We can spend that energy on quality things and be tired and fulfilled.  Or we can spend it on silly things like worry and regret and go to sleep tired and empty.  She’s right.  And I remember her words every day.”

The Best of 2016

As 2016 comes to an end, we would like to take a moment to highlight a few of our most popular posts from each month and to thank the people who contributed to the popularity of these posts. We cannot thank the authors and organizations enough that have contributed to make 2016 one for the books, such as Marie Ennis-O’Connor, Melissa Van Houten, Treatment Diaries, David Wallace, Marcia Donziger, and Edward Leigh. Your efforts to Patient Empowerment Network are greatly appreciated.



Designing With The Patient In Mind

Marie Ennis-O’Conner  explains how the potential of digital technology will never be realized if unless the stakeholders work alongside patients in co-designing solutions that will truly engage, enable, and empower the end-user.

Edward Leigh’s Top 366 Tips

After a decade of work and personal experiences, Ed created the educational tool – Engaging Your Patients 2016 Calendar. In this calendar, there is a tip-a-day to connect, interview and educate patients in the hopes of improving patient satisfaction and safety.


5 Simple Steps to Become a Twitter Pro

Short how-to for beginners to learn how to use twitter to become educated and empowered patients

Complications Post Cancer Treatment

From Treatment Diaries, a “cancer free” patient shares the daily complications from the treatments that cured the cancer.


Shared Decision Making: Putting The Patient At The Center of Medical Care

Marie Ennis-O’Connor explores the importance of shared decision-making (SDM).

Tweetchats: What Are They? How Can I Participate?

A concise guide to help you understand and participate in Tweetchats.


The Power of Content Curation For Healthcare Communities

Marie Ennis-O’Connor explains the importance of more accessible, understandable, and credible healthcare information rather than just more untrustworthy content.

Chronic Lymphocytic Leukemia (CLL) 101 Storify

CLL 101 is an online course offered through created in partnership with the Patient Empowerment Network and To introduce our course, a #patientchat was held on March 18 at 1 PM EST and the included tweets are some highlights from the chat.


MRD Testing For Myeloma: What Is It?, Why Should It Be Used?, and Why?

Interview with C. Ola Landgren, MD, PhD, Chief, Myeloma Service Memorial Sloan Kettering Cancer Center.

Latest Research and Advancement in Multiple Myeloma

Interview with Thomas Martin, MD, Associate Director at the Myeloma Institute UCSF Medical Center.


Living Well With CLL

Interview with Patient Advocate, Jennifer Abraham.

What is Telehealth? How Can It Benefit Patients?

A concise explanation of telehealth plus top ways that it can benefit patients


The Conversation: Getting The Right Treatment and Testing For Lung Cancer

Panel Interview with lung cancer experts Emma Shtivelman, PhD, Chief Scientist Cancer Commons, Mary Ellen Hand, RN, BSN, Nurse Coordinator Rush University Medical Center, and Stage 4 Lung Cancer Patient, Mary Williams.

A Person Centered Approach To The Care of Chronic Illness

Marie Ennis-O’Connor describes the need for chronic illness patients to be treated as whole people rather than pieces of people.


Spotlight on: MPN Cancer Connection (MPN-CC)

Interview with David Wallace, founder of PV Reporter and MPN Cancer Connection.

How to Read Beyond the Headline: 9 Essential Questions to Evaluate Medical News

Marie Ennis-O’Connor shares her tips to separate fact from fiction when searching for reliable medical information.


Seven Steps to a Successful Digital Advocacy Strategy

Marie Ennis-O’Connor gives seven tips to engage your audience online and inspire them to take action around your cause by using digital tools and applications.

How Can Cancer Patients Contribute To Science?

From the Lung Cancer Town Meeting in Chicago, Illinois, Janet Freeman-Daily interviewed Dr. D. Ross Camidge about how lung cancer patients can contribute to cancer research.


The Benefits and Pitfalls of Blogging About Your Illness

Marie Ennis-O’Connor shares some of her concerns and experience about blogging about her illness.

Thanks to Social Media, Rare Progress on Rare Diseases

Recently, social media has been a big part of advances in how we identify and treat rare disease. Patients with these diseases are for the first time able to reach across geographic and cultural borders to band together, giving critical mass to efforts like fundraising and clinical trial enrollment that might otherwise wither away.

Chronic Illness: Oh, The Stress of It All 

Melissa Van Houten shares her story and discusses the stress that comes along with a chronic illness.


The digital sherpa™ Workshop Main Takeaways

Overview of our pilot digital sherpa™ Workshop.

What Records Should You Bring For A Second Opinion Appointment?

From the Lung Cancer Town Meeting in September 2016, the panel of lung cancer experts talk about what patients should bring to their second opinion.

5 Lessons Learned From An Ovarian Cancer Survivor founder and ovarian cancer survivor, Marcia Donziger shares 5 of the lessons learned after she was diagnosed with ovarian cancer at age 27.


Looking Back On 2016 With Andrew Schorr

Amy Gray interviews Andrew Schorr on his thoughts about the advances in cancer treatment in 2016.

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

In her latest blog, Marie Ennis-O’Connor, gives 15 tips to help you become a more empowered and engaged partner in your own health – and the health of those you care for.

Understanding Itching and Night Sweats With MPN

From the Understanding Myeloproliferative Neoplasms (MPNs) Town Meeting, a panel of experts explains why MPN patients have to deal with itching and night sweats and what they can do to treat those side effects. The panel includes:

  • Olatoyosi Odenike, MD, Associate Professor of Medicine at The University of Chicago Medical Center
  • Julie Huynh-Lu, PA-C, Physician Assistant, Department of Leukemia at The University of Texas MD Anderson Cancer Center
  • Srdan Verstovsek, MD, PhD, Professor, Department of Leukemia, Division of Cancer Medicine at The University of Texas MD Anderson Cancer Center
  • Carmelita Escalante, MD, FACP, Professor and Chair, Department of General Internal Medicine at The University of Texas MD Anderson Cancer Center

Please check out the full video below to hear from the experts.

Understanding Itching and Night Sweats With MPN from Patient Empowerment Network on Vimeo.

Getting A MPN Specialist’s Opinion

Interview with Olatoyosi Odenike, MD, Associate Professor of Medicine University of Chicago Medical Center and Srdan Verstovsek, MD, PhD, Professor, Department of Leukemia, Division of Cancer Medicine The University of Texas MD Anderson Cancer Center

From the recent MPN Town Meeting, Dr. Verstovsek and Dr. Odenike are asked about why MPN patients should get second, specialist opinions and how it can benefits patients. Check out the full video below to hear from these two MPN experts.

Getting A MPN Specialist’s Opinion? from Patient Empowerment Network on Vimeo.