What Not to Say When You Don’t Know What to Say

We don’t always talk much about how to talk to each other when illness comes calling. People tend to feel awkward and uncomfortable, often blurting out words that are meant to be encouraging and helpful, but end up being exactly the opposite. Many people just don’t know what to say but, more importantly, many people just don’t know what not to say. Let’s start the conversation with some of the most common comments and why you shouldn’t say them.

The Positive Attitude Comments

These comments, on the surface, seem harmless enough, but they tend to minimize what the person is going through. Comments such as, Be strong, You’re so Brave, Be sure to pray about it, orYou’ll beat this with a positive attitude, oversimplify the challenges of being sick and undergoing treatment. While it’s nice to be hopeful, no matter how positive or prayerful he or she may be, there is no guarantee that the person is going to “beat it” or get well and people who are sick don’t need the added pressure of staying strong and brave through all the ups and downs of their illness.

The Grander Plan Comments

Sometimes, when the people we love are sick, we want an explanation or want to assign some sort of meaning to it, but when faced with a scary diagnosis your loved one may not be receptive to your philosophical approach. Comments that include, God has a plan for youYour illness happened for a reason, or You must have something to learn from this experience, can imply that you think the person is supposed to be sick and that can come across as pretty insensitive.

The Comparison Comments

There are as many ways to be sick as there are people who are sick and just because you know two people with the same diagnosis does not mean that they will be sick in the same ways. Comments along the lines of, I know someone who had your exact same illness and had it so much worse than you and then they fully recovered, just aren’t helpful. Your loved ones need your support and comparing them to others is not supportive.

The Dismissive Comments

When someone is going through something difficult it’s natural to want to try to cheer them up by pointing out a silver lining, but unfortunately that strategy can backfire. Comments like, You don’t look sickIt could be worse, and You got the good version of your illness, are dismissive and insulting. People who are sick aren’t able to ignore the impact of their illnesses, and the people in their lives shouldn’t either.

The Advice Comments

Chances are, if you have a friend who has been diagnosed with an illness, you will want to do whatever you can to help, including offering advice. While your intentions are good, your words might not be appreciated. Saying things like, You should practice gratitudeYou shouldn’t use your illness as a crutch, and Maybe you should change your diet and/or exercise routines, are comments that, instead of being helpful, tend to imply that the person is somehow to blame for her illness; if only she would follow your advice she wouldn’t be sick.

So, what can a well-meaning friend or loved one say? Most patients prefer honesty over cliches. Simply stating, “I’m here for you,” goes a long way. And, if you feel flustered, it’s okay to say that you don’t know what to say, but that you would like to help.

This post was inspired by one of our Empowered Patient Chats. You can find the schedule of upcoming chats and join the conversation here.

Notable News

Immunotherapy is back in the headlines this month with nytimes.com reporting another treatment being approved by the FDA. This second therapy is called Yescarta and is made by Kite Pharma and uses the patients own cells to create a “living drug” that is administered to the patient through a one-time injection. The patients altered cells then battle the cancer and the results from the trial are remarkable. Of the 101 patients who received the treatment in the trial 54 percent had complete remissions and 28 percent had partial remissions. Six months later 80 percent of the patients were still alive. But, as with Kymriah, the other FDA-approved immunotherapy treatment, made by Novartis, the side-effects can be severe and sometimes life-threatening. In the trials leading to the approval of Yescarta two patients died as a result of the side effects.

Yescarta has been approved for adults who have an aggressive form of the blood cancer, non-Hodgkin’s lymphoma and have undergone two rounds of failed chemotherapy. The treatment is expensive at a cost of $373,000 partly because it must be manufactured individually for each patient. An estimated 3,500 people per year in the United States will be eligible for treatment with Yescarta. You can learn more here and you can review our past updates about immunotherapy treatments here and here.

The number of changes it takes to turn a healthy cell into cancer has been one of the most argued topics in cancer research, but as reported by bbc.com British scientists have put an end to the decades-long debate. It turns out that very few mutations, a handful or less, are responsible for whether a cell becomes cancerous or not. In fact, the researchers, who studied the DNA form 7,664 tumors to pinpoint the “driver mutations” discovered that it takes ten mutations to form colorectal cancer, four mutations for breast or liver cancer, and only one mutation to form thyroid or testicular cancer.

The researchers were able to identify which mutations were dictating the formation of cancer by using Charles Darwin’s theory of evolution and the forces of natural selection saying that the driver mutations would appear more often than those that do not make the cells cancerous. Their findings could lead to the development of more drugs that specifically target the driver mutations which would improve treatment for patients. You can find out more here.

Another sweet research breakthrough reported this month at usatoday.com comes out of Belgium where researchers have been working since 2008 to better understand the relationship between cancer and sugar which in turn helps to understand something called the Warburg Effect — where tumor cells rapidly breakdown glucose to form energy that fuels tumor growth. Researchers found that sugar, or glucose, overstimulated the proteins found mutated in human tumors that cause the cells to grow faster and that may explain how the Warburg Effect relates to tumor aggressiveness.

At this point, the research is not considered a medical breakthrough and does not indicate that eating a low-sugar diet could prevent a cancer diagnosis, but it does lay the groundwork for more research and provides a little food for thought. More details can be found here and remember to check back next month to see what has evolved in Notable News.

Fact or Fiction: 10 Common Breast Cancer Myths Busted

October is Breast Cancer Awareness Month, and while many of us may think there is already plenty of awareness of breast cancer these days, it’s quite surprising how many myths exist alongside the facts.  Some breast cancer myths still continue despite a lack of evidence. A survey found that agreement with the phrase: “It seems like everything causes cancer” is on the increase. The danger is that when people believe this, confusion and misinformation about risk factors also increase. This can lead to unnecessary worry and can even hinder good prevention and treatment decisions.  So let’s untangle the facts from the fiction by busting ten of the most common myths which persist about breast cancer.

 

Myth #1: Finding a lump in your breast means you have breast cancer

Fact: Most breast lumps are caused by benign (noncancerous) changes, cysts, or other conditions.

Breast tissue is changing all the time because of fluctuating hormone levels, especially during times of menstruation and breastfeeding. It’s important to be aware of how your breasts normally look and feel, and know what changes to look for.

Take Action: While most breast lumps will not turn out to be cancer, lumps that feel harder or different from the rest of the breast (or the other breast), or change over time, should always be checked by your doctor.

 

Myth #2: Feeling pain in your breast is a symptom of breast cancer

Fact: Most breast cancers do not cause pain in the breast (although some do).

Many women experience breast pain or discomfort in the week leading up to their period. The pain usually goes away after menstruation.  Other breast conditions, such as mastitis (an infection of the tissue of the breast that occurs most frequently during breastfeeding), may cause a more sudden pain.

Take Action: If you have breast pain that is severe or persists and is not related to the menstrual cycle, you should be checked by your doctor.

 

Myth #3: Breast cancer is a hereditary disease

Fact: Only 5% to 10% of breast cancers are thought to be hereditary. The other 90% are largely due lifestyle and environmental factors. 

The risk in a person believing this myth is that they might think there is nothing they can do to prevent breast cancer if it is already in their family. Genetic testing can help you understand your inherited risk and allow you to make choices about your future care.
Some high-risk women also choose to have a prophylactic mastectomy to decrease their risk.

Take Action:  Cancer is a complex group of diseases with many possible causes, including lifestyle factors such as smoking, diet, and physical activity. Lower your risk of developing breast cancer by maintaining a healthy weight, exercising regularly, and limiting the amount of alcohol you drink.

 

Myth #4: Only women get breast cancer

Fact: While the incidence of breast cancer in women is significantly higher than in men, men can get breast cancer.

Many people don’t think of men as having breasts. In fact both men and women have breast tissue, although men have much smaller amounts than women. According to the National Breast Cancer Foundation, men carry a higher mortality than women do, primarily because awareness among men is less and they are less likely to assume a lump is breast cancer, which can cause a delay in seeking treatment.

Take Action:  Know the signs of male breast cancer. Symptoms include a hard lump underneath the nipple and areola and color change in the surrounding area.

 

Myth #5: Breast cancer only occurs in post-menopausal women

Fact: While it is true that the older a woman is, the higher her breast cancer risk becomes, breast cancer does occur in younger women.

Although breast cancer in young women is rare, more than 250,000 women living in the United States today were diagnosed with it under age 40[1]. In young women, breast cancer tends to be diagnosed in its later stages and be more aggressive. Young women also have a higher mortality rate and higher risk of metastatic recurrence (return of breast cancer in areas beyond the breast).

There is no effective breast cancer screening tool yet for women under 40, most of whom have dense breast tissue that prevents routine mammograms from being a useful screening tool.

Take Action:  Being breast aware is very important. Become familiar with how your  breasts normally look and feel and, if you notice a change, you should see your doctor as soon as possible.

 

Myth #6: Wearing an underwire bra causes breast cancer  

Fact: Claims that underwire bras cause breast cancer have been widely debunked as unscientific.

According to the myth, wearing your bra every night or for too long daily prevents your pores from being able to breathe. Sweat accumulates and toxins build up which are believed to cause breast cancer. Another version of this myth is that wearing a bra which is too tight or sleeping in your bra can cause breast cancer. The American Cancer Society (ACS) states “we do not know of any epidemiologic studies published in scientific journals that suggest bras directly contribute to breast cancer.”

 

Myth #7: Deodorants can cause breast cancer

Fact: There is no evidence to back the claims that deodorants and antiperspirants cause cancer.

People sometimes worry about whether chemicals in common products such as cosmetics or toiletries could cause cancer, but there is no good scientific evidence to show that these products affect the risk of cancer. According to Breastcancer.org, even the strongest antiperspirant doesn’t block all perspiration in the armpit. Most cancer-causing substances are removed by the kidneys and released through urine or processed by the liver. Toxins are cleared by lymph nodes and not by the sweat glands.

Take Action: If you still have concerns about the link between antiperspirants and breast cancer, see the NCI fact sheet on Antiperspirants/Deodorants and Breast Cancer for more information.

 

Myth #8: Breast cancer is a single disease

Fact: Breast cancer is not one disease, but a complex group of different types of tumours.

Until quite recently, breast cancer was thought of as one disease, so everybody got much the same treatment, which led to overtreatment for some patients.  We now know that at a molecular level tumors act and respond to treatments differently.  Researchers have to date classified breast cancer into 10 different subtypes.  Having a more detailed system of tumor categories can help tailor treatment to individual patients and predict women’s survival more accurately.

 

Myth #9:  Stress causes cancer

Fact:  The scientific evidence that stress causes cancer is not conclusive.

Despite studies which show weak evidence of an association between stressful events and a diagnosis of cancer, many people still hold the belief that stress is a factor in causing cancer. It’s unrealistic to think we can avoid stress completely. Everyone feels stressed at some point in their lives. But long periods of stress can cause mental health problems such as anxiety and depression and can contribute to physical health problems such as high blood pressure, heart disease, and ulcers. It makes sense then to get our stress levels under control.

Take Action: Adopt healthier coping mechanisms, such as learning stress-management techniques, taking the time to eat healthily and exercising more.

 

Myth #10:  Mammograms cause breast cancer

Fact: While mammograms do involve radiation exposure, the dose used is extremely low.

A mammogram (an x-ray of the breast) currently remains the gold standard for the early detection of breast cancer. Mammograms can detect lumps well before they can be felt, and the earlier that lumps are caught, the better one’s chances for survival. While it’s true that radiation is used in mammography, the amount is so small that any associated risks are tiny when compared to the benefits.

Take Action: According to the National Cancer Institute, the standard recommendation is an annual mammographic screening for women beginning at age 40. Base your decision on your physician’s recommendation and be sure to discuss any remaining questions or concerns you may have with your physician.

To wrap up, certain myths about breast cancer, though inaccurate, can nevertheless seem to make sense when we hear them repeated often enough.  While some risk factors for breast cancer are out of our control, knowing and understanding our risks will help us make the best choices possible for ourselves and our loved ones.

[1] Young Survival Coalition statistics on breast cancer in younger women.

 


For information on galactocele, please check out the blog What is a Galactocele, and What Can I Do About It? and 12 Breast Cancer Myths And Facts You Should Be Aware Of

Medical Bills, EOBs, and You

Medical bills are confusing, and often frightening. Even if it’s for something simple, the numbers add up fast, and to sometimes alarming levels. Add the Explanation of Benefits (EOB) documents you get from your insurer for the same clinical visit or hospital stay, and you can find yourself wondering how much you owe whom, and for what, exactly?

“Not A Bill”

This will be printed on all EOBs, and is the only sure way to tell which is an actual medical bill, and which is an EOB. However, an EOB can be confusing – other than that clear “Not A Bill” printed somewhere on the form.

This is one of the EOBs I got during my own cancer treatment. It’s for my lumpectomy, but the only way I’d know that is the dates on the form. The singular lack of information on what the EOB is for is one of the distinguishing characteristics of these forms, so knowing what the services were, and what your plan’s coverage is for those services, are important details. The numbers are indeed scary, given the Provider Charges of $50,231.25, and the Amount Paid of $0.00. Someone unfamiliar with EOB-ese might have a panic attack before getting to the important phrase “there is no liability on your part for these services” in Remark(s) Explanation 3.

“Statement of Account”

Here’s the summary bill from the hospital that covers the same services (my surgery), but this might only add to the potential for confusion.

The bill has slightly more detail than the insurer’s EOB, but not that much. It mostly seems to be to a series of magic incantations that take the starting amount – New Charges or Adjustments, $53,911.00 – and bring that down to an Amount Due of $50.00. My insurer paid $5,430.02, and there were Adjustments of $48,430.98, which leaves $50.00. On the one hand, hallelujah; on the other hand, what’s the story with that $48,430.98 “adjustment”?

If I didn’t have insurance, would I be on the hook for that whole $53,911.00? Probably, but it’s hard to know exactly. This is where the “chaos behind a veil of secrecy” that is healthcare pricing is most visible: hospital charges.

I learned a lesson from this bill, by the way: always ask for an itemized bill, not a summary bill. Ask for that during the admission process (if it’s a hospital), or at the medical office or testing facility during check-in.

Staying ahead of the healthcare cost curve

Here are my tips for figuring out your medical bills, and your EOBs, to ensure you get what you pay for, and only pay for what you get:

  • ALWAYS ask for an itemized bill, don’t just take a summary bill (the mistake I made with the billing for my own cancer surgery).

  • Review that bill, line by line. Make sure that it doesn’t have anything on it that you did NOT receive. Use CMS’s CPT code look-up tool to help you break down the blizzard of numbers. [CPT codes are the five digit service codes used by all medical providers; they’re in the column labeled Svc Code in the bill example above.]
  • Have your insurer’s Summary of Benefits documentation handy while you review the bill(s). That will be available on your insurer’s website.
  • Do not pay a bill until you get the EOB associated with those billed services.
  • Line up the EOB, and the bill, to make sure the dollars and the codes are correct.
  • Challenge any billed items that are for services you didn’t receive.
  • If services you received are listed as not covered by your insurer on your EOB, challenge that with your insurer’s customer service crew.

Yes, it takes work. And it’s a little crazy that the American healthcare system expects people, particularly sick people, to manage this blizzard of paper with scary dollar figures on it. But the only way to make sure you don’t pay more for your medical care than you should is to be proactive. It’s what empowered patients do.

Astellas Press Release

Astellas and Seattle Genetics Initiate Pivotal Trial of Enfortumab Vedotin for Patients with Locally Advanced or Metastatic Urothelial Cancer

Solid Tumor Antibody-Drug Conjugate (ADC) Enfortumab Vedotin to be Evaluated as a Monotherapy in Patients Previously Treated with a Checkpoint Inhibitor

TOKYO and BOTHELL, Wash.Oct. 10, 2017 /PRNewswire/ — Astellas Pharma Inc. (TSE: 4503, President and CEO: Yoshihiko Hatanaka, “Astellas”) and Seattle Genetics Inc., (NASDAQ: SGEN) today announced dosing of the first patient in EV-201, a registrational phase 2 clinical trial of enfortumab vedotin for patients with locally advanced or metastatic urothelial cancer who have been previously treated with checkpoint inhibitor (CPI) therapy. The EV-201 study will assess the antitumor activity and safety of enfortumab vedotin to support potential registration under the U.S. Food and Drug Administration’s (FDA) accelerated approval regulations.

Astellas is a pharmaceutical company dedicated to improving the health of people around the world. (PRNewsFoto/Astellas Pharma Inc.)

“Locally advanced or metastatic urothelial cancers are often aggressive and treatment-resistant. Treatment options are limited for those many patients who do not respond to chemotherapy and checkpoint inhibitors, or CPIs. In addition, there are no FDA-approved therapies for patients who progress following CPI treatment,” said Jonathan Drachman, M.D., Chief Medical Officer and Executive Vice President, Research and Development at Seattle Genetics. “Initiation of this pivotal phase 2 trial of enfortumab vedotin is a significant advance toward our goal of providing a new treatment option for patients with locally advanced or metastatic urothelial cancer.”

The primary endpoint of the single-arm, open-label trial is confirmed objective response rate (ORR), per independent review. Secondary endpoints include assessments of overall survival, progression free-survival, safety and tolerability. The study will enroll approximately 120 patients at multiple centers globally, and enfortumab vedotin will be administered three of every four weeks for the duration of treatment.

“The initiation of the EV-201 clinical trial demonstrates our continued commitment to patients living with locally advanced or metastatic urothelial cancer,” said Steven Benner, M.D., Senior Vice President and Global Therapeutic Area Head, Oncology Development at Astellas. “Our decision to move forward with this registrational trial is based on the results of our ongoing Phase 1 study, and we look forward to future clinical development milestones for enfortumab vedotin.”

The companies also plan to initiate a combination trial of enfortumab vedotin with CPI therapy in late 2017.

For more information about the phase 2 pivotal trial, including enrolling centers, please visit www.clinicaltrials.gov.

About Urothelial Cancer
Urothelial cancer is most commonly found in the bladder (90 percent). According to the American Cancer Society, approximately 79,000 people in the U.S. will be diagnosed with bladder cancer during 2017 and almost 17,000 will die from the disease. Outcomes are poor for patients diagnosed with metastatic disease, with a five-year survival rate of five percent.

About Enfortumab Vedotin
Enfortumab vedotin is an investigational ADC composed of an anti-Nectin-4 monoclonal antibody attached to a microtubule-disrupting agent, MMAE, using Seattle Genetics’ proprietary, industry-leading linker technology. Enfortumab vedotin targets Nectin-4, a cell adhesion molecule identified as an ADC target by Agensys (an affiliate of Astellas), which is expressed on many solid tumors.

Nectin-4 is highly expressed in urothelial cancers, particularly in bladder cancer. Preclinical data demonstrate that enfortumab vedotin binds to Nectin-4 on cancer cells and releases the cell-killing agent into these target cells upon internalization.

About Astellas
Astellas Pharma Inc., based in Tokyo, Japan, is a company dedicated to improving the health of people around the world through the provision of innovative and reliable pharmaceutical products. We focus on Urology, Oncology, Immunology, Nephrology and Neuroscience as prioritized therapeutic areas while advancing new therapeutic areas and discovery research leveraging new technologies/modalities. We are also creating new value by combining internal capabilities and external expertise in the medical/healthcare business. Astellas is on the forefront of healthcare change to turn innovative science into value for patients. For more information, please visit our website at https://www.astellas.com/en.

About Seattle Genetics
Seattle Genetics is an innovative biotechnology company dedicated to improving the lives of people with cancer through novel antibody-based therapies. The company’s industry-leading antibody-drug conjugate (ADC) technology harnesses the targeting ability of antibodies to deliver cell-killing agents directly to cancer cells. Seattle Genetics commercializes ADCETRIS® (brentuximab vedotin) for the treatment of several types of CD30-expressing lymphomas. The company is also advancing a robust pipeline of novel therapies for solid tumors and blood-related cancers designed to address significant unmet medical needs and improve treatment outcomes for patients. More information can be found at www.seattlegenetics.com and follow @SeattleGenetics on Twitter.

About the Astellas and Seattle Genetics Collaboration
Astellas and Seattle Genetics entered into the ADC collaboration in January 2007 and expanded it in November 2009. Under the collaboration, the companies are co-developing and have options to globally co-commercialize enfortumab vedotin.

Seattle Genetics Forward Looking Statement
Certain of the statements made in this press release are forward looking, such as those, among others, relating to the possibility that EV-201 will generate data that would be sufficient to support potential registration of enfortumab vedotin under the U.S. Food and Drug Administration’s (FDA) accelerated approval regulations, therapeutic potential of enfortumab vedotin, its possible safety, efficacy, and therapeutic uses and anticipated development activities including future clinical trials and intended regulatory actions. Actual results or developments may differ materially from those projected or implied in these forward-looking statements. Factors that may cause such a difference include the inability to show sufficient activity in the clinical trials and risk of adverse events as enfortumab vedotin advance in clinical trials even after promising results in earlier clinical trials. In addition, as our drug candidates or those of our collaborators advance in clinical trials, adverse events and/or regulatory actions may occur which affect the future development of those drug candidates and possibly other compounds using similar technology. More information about the risks and uncertainties faced by Seattle Genetics is contained under the caption “Risk Factors” included in the company’s Quarterly Report on Form 10-Q for the quarter ended August 1, 2017 filed with the Securities and Exchange Commission. Seattle Genetics disclaims any intention or obligation to update or revise any forward-looking statements, whether as a result of new information, future events or otherwise.

Cautionary Notes
In this press release, statements made with respect to current plans, estimates, strategies and beliefs and other statements that are not historical facts are forward-looking statements about the future performance of Astellas. These statements are based on management’s current assumptions and beliefs in light of the information currently available to it and involve known and unknown risks and uncertainties. A number of factors could cause actual results to differ materially from those discussed in the forward-looking statements. Such factors include, but are not limited to: (i) changes in general economic conditions and in laws and regulations, relating to pharmaceutical markets, (ii) currency exchange rate fluctuations, (iii) delays in new product launches, (iv) the inability of Astellas to market existing and new products effectively, (v) the inability of Astellas to continue to effectively research and develop products accepted by customers in highly competitive markets, and (vi) infringements of Astellas’ intellectual property rights by third parties. Information about pharmaceutical products (including products currently in development) which is included in this press release is not intended to constitute an advertisement or medical advice.


SOURCE Astellas Pharma Inc.

For further information: Contacts for inquiries or additional information: Astellas Pharma Inc., Corporate Communications, TEL: +81-3-3244-3201 FAX: +81-3-5201-7473 or Seattle Genetics, Corporate Communications, +1-425-527-4188

Patient Profile: Dana Oakes

Dana Oakes

Breast Cancer

Her diagnosis came in October 2011 during a routine mammogram. She says that when the technician came in for more pictures she knew immediately she had cancer. A biopsy confirmed malignancy and without any “debate or deliberation” Dana Oakes opted for a double mastectomy. Her surgery was scheduled for the next month. “I didn’t have a lot of of fear,” she recalls. “I said let’s get it out and get rid of it.” Oakes wasn’t interested in letting cancer get the best of her. After all, she had only recently recovered from a decade-long, debilitating battle with Lyme disease.

“It totally disabled me for many years,” she says of the Lyme disease that forced her to spend up to 20 hours a day in bed and go from full-time to part-time employment. Lyme brought with it other ailments that included burning pain in her hips, pain in her joints, profound fatigue, and flu-like symptoms. She describes the treatment and recovery as intense and says that, in a lot of ways, she feels that her chemo and cancer treatment were easier.

“I feel like I sailed through,” she says of her cancer treatment which did not leave her bedridden as her Lyme disease had. She credits an oncology team who made it as easy as possible and her husband Don who utilized the Family Medical Leave Act so he could be by her side every step of the way. But, it wasn’t all smooth sailing for Oakes. “With every doctor visit my prognosis seemed to get worse,” she says. “I was 62 years old and I had a fifty fifty chance.” Her treatment was aggressive. A month after her surgery she began chemotherapy which continued through April of 2012. She began radiation two months later, but there were several complications along the way.

Within weeks of recovering from her initial surgery she had to have an emergency appendectomy and she learned that, due to her Lyme disease, she would not be a candidate for breast reconstruction. Then during chemotherapy she got phlebitis and had to have a port put in. She also had to skip a week of chemo because her white blood cell count was too low. In addition, a heart issue developed due to side effects from one of her medications and she developed neuropathy which caused a stinging feeling in her ankles and calves that she equates to being attacked by yellow jacket wasps.

Fortunately, her heart issue was resolved within a year and, although it seems to be permanent, her neuropathy is controlled by medication. Oakes says she doesn’t miss her breasts at all and found an added bonus in that her cancer treatment may have also tackled any residual Lyme disease. “I found the chemo came as close to finally knocking it out as anything else,” she says.

This year, Oakes has graduated to seeing her oncologist only once a year, she has had no recurrence, and she lives with no evidence of disease, or NED. “I prefer to not say I’m cancer free because we never know,” she says. “But I like NED. I like him a lot.”

Changing the Lens: Bringing Medical Records to the Patient Bedside

Editor’s Note: This blog was originally featured here as a guest blog for The Beryl Institute.


A patient was recently discharged from an exceptional hospital after a 2-day stay. During those 2 days, he saw endless doctors, attendings, residents, fellows, interns, nurses, nurse practitioners, nursing students, TV and phone service staff, physical therapists, social workers, case managers, housekeeping staff, spiritual chaplains, food and beverage staff, transport staff and discharge planners. Forgive me if I’ve missed anyone. All of these hospital employees play an essential role in a patient’s care at the hospital. There was just one person missing: someone from the medical records department. It’s time to change the lens we are using to view the importance of medical records to patient success and health.

No one visited the patient to discuss the importance of having a copy of his medical records post-discharge and maintaining a personal medical history file. No one verified authorization for the release of medical records. No one asked what medical records the patient needed upon discharge. No one confirmed what doctors needed a copy of the patient’s medical records: like his primary care doctor, his cardiologist or his neurologist. There wasn’t a single person that walked through the revolving door of the patient’s room that mentioned anything that resembled “medical records”. As a private patient advocate, this is no surprise. I’ve accompanied clients to my fair share of hospitals, medical facilities and cancer centers. I’ve yet to see a medical records representative visit with a patient during their time at the hospital. Electronic Health Records (EHR) are not the answer as they weren’t designed with the patient as the priority. Patient portals, if a facility has them, aren’t effectively adopted or utilized and have many shortcomings.

Here’s what should be happening at hospitals. A medical records representative should visit patients in the hospital with a smart tablet. The representative should discuss a patient’s care goals and discuss care coordination with respect to medical records. Medical record authorizations should be pulled up on the smart tablet and patients should be able to electronically authorize releases from their bed. At minimum, the medical records representative should verify the contact information of doctors that should be receiving a copy of medical records for follow-up. All doctors who regularly treat the patient need to have a copy of the medical records for seamless communication, coordination of care, and patient success post-discharge. At discharge, patients should at least receive a copy of every test performed during their stay at the hospital. There is absolutely no reason any patient should be discharged without a basic copy of their records. None. Release authorizations and strategic planning of the use of records for patient success need to be done at the bedside while the patient is in the hospital.  Medical record acquisition needs to become an active part of the discharge process, not a hunt thereafter. Let’s stop this insanity of needing to walk to the medical records office, usually in the basement of a different building than where the patient’s room is, to fill out a form or print one online and mail or fax it.  We need to bring the medical records department to the patient’s room while they are in the hospital’s care: a simple change with potential for profound, patient-centric results.

Highlights from Friday, September 22nd Empowered #patientchat

On Friday, September 22, 2017, we hosted an Empowered #patientchat where we discussed innovation and disruption in healthcare. During the chat 56 people participated with almost 1.9 million tweet impressions. The #patientchat tweeters shared that patients should be included at every step of the way when designing and innovating technology for patients. Check out some of the highlights below.

Wondering how YOU can advance MPN research?

September is Blood Cancer Awareness Month and we’ve spent the month focusing on ways you can become a more empowered patient. If you missed our recent webinar: What YOU can do to advance MPN Research, the replay is now available. As always, we’d love to hear from you about ways you’ve empowered yourself!

12 Keys to Finding, Growing, and Nurturing Your Online Community

“If you want to go fast, go alone; if you want to go far, go together” – African Proverb

Before the Internet connected people from every corner of the globe, many patients experienced their illness in isolation.  The Internet (and social media in particular) has lessened our sense of isolation, helping us feel more connected to others who are going through the same experiences.   Online communities may be virtual, but they are no less real in terms of support and influence. We see just how much people are willing to reach out to others to provide advice and support – even to strangers online.

At the heart of a high-functioning social network is a strong sense of community.  Social media has accelerated the growth of patient and caregiver communities, allowing people to come together around shared experiences, regardless of time or place. For many of us, finding our online community has made a significant difference to how we cope with our illnesses.  From helping us to uncover a diagnosis and finding the right doctors and treatments, to learning about everyday coping tips, turning to our online community can make all the difference.

Your online community can be your eyes and ears, helping you find something you may have missed or not known about.  Isabel Jordan, the mother of a son with a rare disease, turned to her online community to help find a diagnosis for her son.  “Connecting the dots by seeing them in someone else let me provide valuable clues to our own clinician researchers and now we’re heading down a new diagnostic path”, she says. “Would I have seen them anyway? I don’t know. But I credit my connections on social media for helping me keep my eyes open to new ideas”.  Katherine Leon, an SCAD (spontaneous coronary artery dissection) patient, leveraged the power of her online community to find the cause of her rare heart disease, and prevent it from happening to others. At the time of her diagnosis, SCAD was a poorly understood and under-researched condition. Physicians had no clinical studies on which to base treatment plans. Katherine connected with fellow SCAD survivors through social media and used their collective voice to do what hospitals couldn’t – to launch research at the Mayo Clinic.

 

Five Ways to Find Your Online Community

Are you a newly diagnosed patient or a caregiver wondering where to find your own online community? Here are five practical ways to get started.

(1)  Find People to Follow on Twitter

Start by following the Twitter accounts of organizations and groups related to your interest. Go to their website and click on the Twitter follow button if they have one. Once you start following individuals and organizations, Twitter will automatically populate your account with suggestions of similar accounts to follow. You can also view my list of patient advocates on Twitter and add your own name to this list if you wish.

(2) Build Twitter Lists

Twitter can be a little overwhelming to new users. To help you keep track of conversations, it’s helpful to organize your followers into lists; e.g. “organizations”, “researchers”, “patient advocates”, “hospitals”. You can create your own lists or subscribe to lists created by others. Christina Lizaso, a moderator of the #gyncsm Twitter chat, has created several public lists worth subscribing to. See also this comprehensive list of patient chat community members created by Team Intake.Me. 

(3) Follow Relevant Conversations

The easiest way to find conversations of interest is to click the native “Search” facility at the top of your Twitter screen and enter your keyword or hashtag, for example #cancer. Hashtags are a useful way to search for health related conversations.  Jo Taylor, a moderator of the UK-based breast cancer Twitter chat #BCCWW, explains that “finding disease hashtags opens up connections. If you connect with others you will be able to meet others easily online and you will build and learn from there.”

(4) Join Twitter Chats

A Twitter Chat is a public Twitter conversation around one unique hashtag. This hashtag allows you to follow the discussion and participate in it. Twitter chats can be one-off events, but more usually are recurring weekly chats to regularly connect people, for example #PatientChat held every other Friday at 10:00 am Pacific/1:00 pm Eastern. The chat will be hosted and the host will ask questions along the way to stimulate discussion and sharing of ideas. There are chats for most disease topics and a full list can be found by searching the database of the Healthcare Hashtag Project. This is also a useful resource to find Twitter users to follow. In addition you will find past transcripts of chats on the website so you can familiarize yourself with the chat and its norms before taking part. And “if you can’t find a tweet chat you enjoy,” recommends patient advocate, Annette McKinnon, “start a new one, register it @symplur and build a new community.”

(5) Join Facebook, Google+ and LinkedIn Groups

On Facebook, Google+ and LinkedIn you can connect with other patients and join groups related to your disease or condition. Many organizations have a Facebook and LinkedIn presence and by following their pages you can keep informed of their activities and find other patients to connect with.

When you’ve identified some groups which interest you, don’t feel you have to join in straight away. Take a little time to learn if the group is the right fit for you. Does it appear to be a welcoming and safe space? Are the discussions and norms of the group respectful and in line with your interests and values? “Patients and caregivers seeking to join an online support community should ensure that they feel comfortable browsing a new online group before posting,” according to John Novack, Communications Director for Inspire, a healthcare social network with more than one million registered members. “Be an active lurker in a new group,” he advises, “and if possible, search for the topics most discussed there, because that will give you a sense of the overall focus of that community.”   Jo Taylor agrees: “Watch and lurk (i.e. you don’t have to contribute – just read what is said) or join in.  It’s up to you,” she says. “Don’t feel pressured to talk, but also don’t feel that you would say anything wrong.  It’s a friendly place.  Join in and meet others.” You might even find these online connections become friends offline too.  “I have met people from all over the world,” says Jo, “but some are in my own town and I see them regularly.  Whether you want online connections or face to face, both can happen due to the power of social media.”

 

7 Ways to Nurture Your Community

If you are moving towards creating an online community, here are seven ways for you to develop your community and help it flourish.

(1) Grow Your Community

A community is grown over time, not built overnight.  I reached out to Julia, also a moderator of #BCCWW, to ask about her experience of growing a Twitter chat. She explained that the community will evolve by trial and error, “but it’s important to know what it is you are aiming to achieve and why. If you can get that clear”, she says, “It will follow from there”.

Don’t get hung up on follower numbers. It’s the quality of your interactions and your ability to cultivate meaningful relationships that is key to building a successful online community.  As Erin Gilmer, founder of The Research Loop, points out, sometimes it may seem like there are only two people in a Twitter chat, but it turns out to be more, because many patients “lurk” but don’t feel comfortable tweeting openly. “Even if it’s just two of you,” she remarks, “it’s still a community.”

However, if your community is new you will want to build up your initial numbers to get started. Go through your e-mail contacts list and invite relevant people to join your community. Do the same with your followers on Twitter, Facebook, LinkedIn and any other social networks you are active on. Ask existing members to invite their friends.  When choosing which social network to communicate on, go for the platform your audience is most familiar and comfortable with.

(2) Provide Valuable Information

Building a sustainable community requires you to provide value and be responsive to the needs of that community. Think about how your group will become the go-to information resource for your members. This means you will need to create and share information on a consistent basis. Don’t automatically assume you know what the group need. Ask questions to better understand their issues and concerns. Invite researchers, physicians and other healthcare professionals to answer questions for your community through Facebook, LinkedIn, Twitter and blogs.

(3) Connect Members to Each Other

As humans we have an innate desire to feel connected with others who are going through the same experiences we are. Clay Shirky, author of Here Comes Everybody: How Change Happens when People Come Together, holds that “the desire to be part of a group that shares, cooperates, or acts in concert is a basic human instinct.” In the future new online tools will come and go, but our innate desire to reach out, to connect, and to help one another will remain.  “People seek community online to connect with other people”, says Colleen Young, Director of Community, Mayo Clinic Connect at Mayo Clinic. “If you want to build a thriving community, focus on the people, help them connect and get them talking.”  Introduce members to each other and connect like-minded people.  Think about how you might create common bonds, cultivate a sense of belonging, and build strong relationship among members.

(4) Listen: Don’t Judge

Do listen to your community and try to address their legitimate concerns. You may not agree with everyone in your group, but try to understand where they are coming from. Determine whether negative comments have any merit. This doesn’t mean you have to engage with trolls or unwarranted criticism. Sometimes people just want to cause drama or discord, so it’s important to put clear policies in place which protect you and your community from abuse.

(5) Reach Out and Support the Community

Collaboration, not control is at the heart of a successful community.  Reach out to your members and find out how you can help and support them. Find answers to their questions, retweet, favorite and share their content with others.  Equally, don’t try to do everything yourself. Co-create content with your members and ask for help when you need answers and support too.

(6) Nurture Your Community

When you nurture relationships in a human way, they flourish like friendships in our personal lives. Take time each day to interact personally by welcoming new followers, answering questions, acknowledging comments, addressing members by their name and thanking people for contributing to the conversation.  Also, take time to acknowledge birthdays, milestones and other achievements.

(7) Be Open, Honest and Transparent

Be open and transparent in all your online activities. Without honesty, you have no trust or credibility. Model the behavior you wish to see in the community. Be willing to self-disclose and encourage self-disclosure in others by creating a safe space for members that welcomes open and honest discussions.

Bonus Tip: Broaden Your Reach

If your goal in creating a community online is to influence policy or improve communication with a wider healthcare audience, you will need to broaden your reach to create impact. “Patient advocates who lead successful online groups and chats have to establish credibility with all stakeholders in a particular therapeutic area, if the advocates want to broaden beyond establishing groups of only patients,” says John Novack. “Some Twitter chat communities like #BCSM, #LCSM and #GYNCSM are powerful”, he notes, “because caregivers, clinicians, and technology leaders are regularly involved.”

Building a community is an ongoing process; it requires an investment of time, and according to Annette McKinnon, “a core group of committed and persistent people.” It’s about building trust, connecting people, and providing valuable information and support over the long-term. Your community is always about something greater than yourself. The best communities will provide a safe space to support each other, mentor and help each other grow. Whether you are joining a group for the first time or starting your own online community, consider how you might contribute your unique experience and expertise to make the group a more connected and inclusive space.  Finally, it’s important to have realistic expectations. A community requires “balance, and equanimity; a generosity of spirit; an expectation of complexity; a tolerance of frustration; a desire to listen, and to give,” says Andrew Spong, Lead, Health Equals.   “The truth may be that communities are less cohesive than they appear,” Spong reflects, “but they are still the best tools we have to create bonds with others of like minds and experience.”

Related Reading

#PatientChat transcript on online communities

Notable News

Remember last month when we told you about the successful immunotherapy test trial known as CAR T therapy using the patient’s own immune cells to fight leukemia? There was a big push for the U.S. Food and Drug Administration (FDA) to approve the therapy and they did! According to NPR.org the approval of the first cell-based gene therapy in the United States is being called a historic action. The drug called Kymriah was developed by Novartis. It has been approved to treat a form of acute lymphoblastic leukemia in children and young adults up to age 25 who have not responded to other treatments or who have experienced relapse. In the test trials, 83 percent of 63 patients were in remission within three months of undergoing the therapy. While very successful, the treatment does come with serious risks including a potentially life-threatening immune system response. Therefore, the FDA is requiring strong warnings and, for now, the treatment is only available at 32 specially trained hospitals and clinics. The treatment is also very expensive — $475,000 for the one-time treatment. Patients who do not respond within one month will not be charged. You can read more details here and if you missed the information we shared about CAR T therapy last month you can find that here.

This month fda.org announced another first in cancer treatment. A biosimilar drug, which is an almost identical copy of an original drug made by another company, was approved for the treatment of several types of cancer. Mvasi, a biosimilar to Avastin, is the first biosimilar approved for cancer treatment in the United States. This is significant because biosimilar drugs encourage competition among companies and help keep healthcare costs down for patients. Mvasi is approved to treat certain colorectal, lung, brain, kidney and cervical cancers in adult patients, but it could still be a couple years before it is available. More specifics about Mvasi, the cancers it is used to treat, and the side effects can be found here. Also, an interesting article on reuters.com about the impact biosimilars will have on healthcare costs as they become more widely available can be found here.

It’s hard to believe, but a virus known to cause brain defects could eventually be used to heal the brain. That’s what sciencedaily.com is reporting based on a study by researchers from Washington University School of Medicine in St. Louis and the University of California, San Diego. The study involves the Zika virus and glioblastoma, the most common form of brain cancer. The Zika virus targets immature and growing brain cells. That’s what makes it so dangerous to pregnant women and fetuses. However, in laboratory testing the researchers found that in an adult patient with glioblastoma, the Zika virus may bypass the normal brain cells to target the cancerous cells. It’s still too early to tell if the virus is a viable option for cancer treatment and there are other health concerns to consider, but this encouraging study opens the door for more promising research. Learn more about the Zika virus study here.

Finally this month, a patient story that is going viral. A woman in Minneapolis with stage 4 breast cancer mentioned to her mail carrier how overwhelmed she felt by her diagnosis and treatment. The mail carrier, also battling cancer, organized a very heart-felt expression of hope in the form of 101 heart-shaped balloons planted in the woman’s front yard. See video and learn more about these two empowered patients here and make sure you stay in touch with what’s going on at PEN here and look for more Notable News coming next month.

Patient Profile: Elizabeth Carswell

She was 25 weeks pregnant and felt like she had the flu. It was early July 2015 and she made her way to her obstetrician’s office because the antibiotics she’d taken over the Fourth of July holiday hadn’t made her feel better. A couple hours later Elizabeth Carswell was in the hospital being diagnosed with Acute Myeloid Leukemia. She was 33 years old.

“Obviously, the scariest part was the first two months when I was still pregnant,” says Carswell, known as Liz to her friends. She was immediately transferred to Jackson Memorial Hospital in Miami and began chemotherapy. “It was a very tough decision to be treated, but I wanted to meet my baby.”

The first two rounds of chemo were unsuccessful and her doctors wanted her to undergo a more aggressive treatment. That meant it was time to deliver the baby. Liz was 32 weeks along and the surgery was extremely risky. Her blood counts and platelets were considered too low for surgery, but despite it all, baby Hudson was born weighing in at 4 pounds. Liz continued her treatment in the hospital while Hudson was admitted to the NICU for five weeks.

When Hudson was released from the hospital, Liz was not. Her boyfriend, Hudson’s father, Frankie Lightfoot had to return home to work, so Liz’s father and her sister moved to Miami, rented an apartment near the hospital and cared for the baby. Liz was never alone. Her father and sister alternated caring for the baby and spending the night in the hospital with her. Her friends showered her with gifts for the baby and travelled to her bedside to decorate her hospital room. Meanwhile, her doctors were trying to ready Liz for a bone marrow transplant, but could never get her levels where they needed to be and eventually her Jackson Memorial team told her it was time to go home and spend whatever time she had left with her baby.

That’s when a friend connected Liz with the Leukemia and Lymphoma Society which led her to a clinical trial at the City of Hope Cancer Research Hospital in Duarte, California under the care of Stephen J. Forman, M.D., F.A.C.P. She went the next day. The trial involved very aggressive full-body radiation and a stem cell transplant. Her brother, a perfect 10 match, was her donor.

The transplant put her into remission. It was November 2015. Then, in August of 2016, she found some lumps in her breast. The leukemia had returned in mass form. More radiation and seven more rounds of chemo later she is technically in remission. But, due to a gene mutation that makes her highly likely to relapse, Liz continues with regular rounds of chemo for maintenance.

“My doctor expects recurrence,” she says. That’s why she will undergo another stem cell transplant within the next couple months. This time, from an unrelated donor so that a new immune system can be introduced. She will spend another six weeks in the hospital, but she believes this is what she has to do. “I know it’s needed,” she said. “I trust it’s needed. I trust my doctor. He’s pretty amazing.”

Liz is undaunted by what lies ahead. “There are lots of ups and downs, but a positive attitude is a must if you’re going to survive,” she says. Though she credits Hudson, now two, as her main motivation. Early on she felt it was Hudson growing inside her who was keeping her alive and now being his mother keeps her going. “I’m not scared to go through it again,” she says of her upcoming transplant. “I’m excited to do it again. I’ll do anything that will give me a chance to watch Hudson grow up.”

Liz has kept a record of her journey on her Facebook page, Prayers for Elizabeth. She continues to keep her page updated and in addition to helping her, she hopes that sharing her story can help others. You can keep up with Liz here.

Health Cost Literacy: “How much is that?”

The title of this post asks the $3.5 trillion-with-a-T question in American healthcare: how much is that? It often feels like healthcare is split into two camps, with one side working away feverishly to find more cures for life-threatening conditions like cancer and ALS, while the other side is working at an equally feverish pace to figure out just how many millions of dollars they can make of the latest breakthrough.

A recent example of this Tale of Two Healthcares was the roaring headlines about the first FDA-approved gene therapy, Kymriah (tisagenlecleucel), for leukemia. The business side of healthcare was ecstatic, pricing the drug at $475,000, which made Wall St. happy, and Novartis (the drug’s maker) ecstatic. The patient side of healthcare? Not so much.

Kymriah is an extreme example of healthcare pricing, but even trying to get a CT scan can turn into a trip down the rabbit hole, if you try to find out before the scan how much it will cost you. Asking “how much?” can seem like shouting down a well the first time you do it – you’ll hear an echo, because the person you’re asking will likely say “how much?” right back, in total shock at the question. However, asking questions is how we get answers, right?

Here are tips for asking “how much is that?” and getting meaningful answers:

  • Find out if your insurer has a cost-estimator tool. If so, use it. For everything required for your care. You’ll need the insurance billing code for the test, scan, or procedure (called the CPT code), so get that from your doctor’s billing office.
  • Use online price-check tools like Clear Health Costs or Fair Health Consumer to reality-check the pricing information you get from your insurer’s cost-estimator tool.
  • When your doctor refers you to a lab for testing, or an imaging center for scans, ask if they know what the cost is. They likely won’t at first, but the more of us who ask the question the more they’ll want to know the answer.
  • Call around to labs and imaging centers in your insurer’s network to ask about their cash price for the test or scan that’s been ordered for you. Depending on the cash price, you might be better off not using your insurance, and actually paying cash for the test or scan. If you have a high-deductible plan, you’ll need to assess which medical services are worth going off-the-books for if you haven’t yet met your annual deductible.

I know a lot about “how much is that?” because I was uninsured for five years after my own cancer treatment ended. I discovered that asking the question got me the answers I needed, and I could choose the providers that could give me a cash price for the mammograms and follow-up oncology services I needed. I’ve continued to use the simple question “how much is that?” every time a doctor has ordered tests or scans, because even with insurance, you’ll wind up with a bill for some part of the service.

If we all work together, asking “how much is that?” before receiving any medical service, we’ll start to shift the system, and the culture of healthcare. It takes a village, not just to raise a child, but also to change a status quo.

It’s your turn. Start asking.

Clinical Trials – Patients ARE the Pioneers

Editor’s Note: After a long and resilient battle with primary peritoneal cancer, Roberta Aberle, 53, of Auroro, CO passed away on November 1, 2017 with her husband David Oine at her side. Even as she battled her own cancer, Roberta was a tireless advocate for patient care, hoping to improve the lives of others also fighting life-threatening illnesses. She will be greatly missed by all who knew her.


“The pioneering spirit is less about thinking up new ideas as ridding ourselves of dogma and old habits that hold us captive in thinking.” Bertrand Piccard http://bertrandpiccard.com/home

Profound. Who wants to be captive in their thinking? No one I can name. Especially in the world of healthcare. Medical sciences are far surpassing dogma in many aspects of delivering care to patients – in technology, in documentation, in processes and structure, in diagnostics, in pharmaceuticals and other interventions such as surgical techniques all the way to preventative care. Some diseases have been eradicated entirely, others are manageable and have become chronic rather than life threatening.

It is invigorating to have even a small part in innovations with the potential to alter and improve the landscape of health and well-being. In last week’s broadcast of Mythbuster’s #3 – Do Patients Have a Voice While Participating in Clinical Trials? Our host, Andrew Schorr brought up the notion of being perceived as a pioneer in cancer treatment with each of our respective roles in clinical trials. Our panel was comprised of an oncologist and a clinical trial navigator (a resource who pairs patients to relevant trials)and myself, a patient advocate and participant in multiple clinical trials.

One trial in which I participated led to the provisional release of a therapy added to front line treatment for Ovarian, Fallopian Tube and Primary Peritoneal Cancer who test positive for either the BRCA 1 or 2 inherited genetic mutations. Addition of the oral medication researched has since shown astounding results for patients with these forms of cancer that prolongs disease free progression an average of 19.1 months. https://www.lynparza.com/ovarian-cancer-treatment.html

I personally never considered myself a pioneer, but in this context, I suppose it fits. Without patients, researchers and oncologists exhausting every resource to identify what can extend our life or achieve a cure for incurable forms of cancer; how can we validate new inroads to treatment?  Regardless of how it is termed, I take great pride in participating in clinical trials to prove efficacy for patients of today and the future. Pioneer. Forerunner. Research Subject. Terms mean less  to me than the knowledge that if just one patient considers a clinical trial as a result of seeing our webinar, it is validation enough my involvement matters.

Shortly after the broadcast, I was talking to a new acquaintance at a gathering about the program and my personal experience with various clinical trials. As I detailed my journey for her, she asked a time or two, so “ALL you ever did was take experimental medicines?” Communication breakdown. But yet, I was quite happy she expressed her question in the way she had so I could clarify. My response was swift, “No. In actuality, in only one clinical trial was the medication ‘‘experimental’. Other than one, I was enrolled in only Phase 3 or higher trials where the medications were known to be effective, they just needed more data to understand dosage, frequency and when to use in combination with existing chemotherapy drugs to amplify the power of each.”

Despite being in multiple clinical trials, I have yet to achieve remission and the elusive cure for my form of cancer; yet, I still chime praise for each trial I’ve been enrolled in. I consider each an opportunity a peek into the future of cancer management. While I cannot claim certain things regarding my cancer as a result of clinical trials, each one has earned me quality time with loved ones or has been a bridge to a new treatment option not available to me were it not for the commitment of researchers, oncologists and patients worldwide.

When you view the webinar rebroadcast or in summation, my hope is that you will be receptive to clinical trials as an additional avenue available to you. Beyond our specific topic of whether patients have a voice in clinical trials, in our segment, our message is clearly that patients do retain their voice during a clinical trial. Of equal importance, collectively our outcomes and first hand experiences are an even more powerful voice chiming their merits. In many ways the patient voice is important not just during, but extends long past the time parameters of trials.

https://www.patientpower.info/event/myth-busters3

Highlights from Friday September 8th Empowered #patientchat

On Friday, September 8th, 2017, we hosted an Empowered #patientchat where we discussed risk reduction and prevention. During the chat 34 people participated with about 1 million tweet impressions. Check out some of the highlights below.