Sujata Dutta: Sharing the Journey

Check out Part I of Sujata’s story: Normalizing the Word Cancer


 

Sujata Dutta, Part 2 Sharing the Journey from Patient Empowerment Network on Vimeo.

Empowered multiple myeloma patient, Sujata Dutta, shares an overview of her treatment from a stem-cell transplant to a clinical trial, and how she chooses to see the positives in her journey.


Transcript:

So once I was diagnosed with multiple myeloma and I was actually informed about the standard of care. So standard of care with multiple myeloma today is typically a couple of cycles of chemo. So I had about five or six cycles of chemo to bring the M-spike to as low as you can, and then that’s followed with like a stem-cell transplant (an SCT) or bone marrow transplant – both are the same. In my case, it was an autologous stem-cell transplant which meant that I use my own stem cells which were extracted and stored and then given back to me.

 So then post-transplant, if the counts look good then you go into a maintenance routine. So I didn’t have succession of chemo before the stem-cell transplant. I had my stem-cell transplant at Mayo in Rochester, Minnesota and unfortunately, in my case, we did not achieve the results that we were expecting so my disease actually did actually not come down as much as we would have hoped. 

So, I had to go back on a chemo routine and I’m on that one right now. However, I actually am part of a clinical trial. I signed up to be part of a clinical trial that’s looking for newer ways of treatment which are shortening the time of treatment and also with the goal of improving the standard of you know care or like better lifestyle for the patients and like obviously longer life.

So, I’m part of a clinical trial that’s combining Revlimid and Daratumumab, which is like usually you would have an 8-hour hospital visit for the chemo, but in this I am just getting a subcutaneous injection in my belly. It’s a 5-minute injection so that’s not pleasant, but 8 hours compared to 5 minutes, it’s great.

So yes, I am back on chemo just so that we can bring the disease under control. But typically with standard of care with multiple myeloma is like couple cycles of chemo followed by a transplant. If you are eligible for one, and if you are ready for one, and then followed by maintenance. So that’s typically what happens with multiple myeloma.

But there are loads of other treatments that are coming up and researches that are happening, clinical trials that are happening, I would highly encourage it if you come across a clinical trial that interests you, speak to your doctors and see what they say. And if you’re eligible, it would be a great thing to do. I personally wanted to get involved in some kind of volunteering activity. I know that folks before me have done so much and I’m benefiting from that, I wanted to give back as well so I actually signed up for the trial. But other than that, that’s pretty much what the standard of care is today for multiple myeloma or what I know of.

I think one of the biggest takeaways from my cancer journey, I would say is learning to be appreciative of what I have. Learning the value of what I have, not that I did not know that, but I think this life changing kind of event that has happened has taught me even more of the value. For myself, what’s my worth? What’s the worth of somebody else in my life? What’s the worth of things around me in my life? And it has, so my journey has actually helped me understand these things and be appreciative of what I have. 

My husband he’s been my primary caregiver throughout this journey and we have actually like been on the journey together, so it has been an amazing journey I would say. 

We have discovered like a new relationship between us, like going for chemo, going to Mayo for 6 weeks, and we stay together and you know how much I appreciate what he has had to go through because of me. Like looking at me not being able to walk or not even being able to talk or even drink water because of the amounts of … that I had and supporting me through all of that. I really appreciated it. I appreciated my boys, like I have a 7th and a 6th grader, and for them to understand what I was going through and for them to be able to accept in the form that I was, has been great.

I have friends, I have family who have supported me throughout this so I really appreciate them being with me, being around me, supporting me, rooting for me, praying. There’s one thing that I tell everybody like you know there have been so many people known and unknown that have like you know helped me or prayed for me or rooted for me that I have no choice but to get better.

So you know I really appreciate what I have and I think I also appreciate the value of what I have, and like not think about what I don’t have. I am a believer that divine intervention happens, you don’t know why but everything has a reason and I think whatever happens, happens for the best. For even cancer, I think happens for the best.

For me to understand like what all I had and like how grateful I was for everything that I had. For me to go back to a hobby that I had almost forgotten. I paint, I used to paint and I’d almost given up on that through my journey. I was like I need to go back and do something else and I went back to painting. So like so many good things have come out of this, so you know I’m really grateful for whatever has happened and I’m quite positive for the future so I am looking forward to what’s in store for the future and I’m going to be positive keeping my fingers crossed. That’s my story for you.

Will Telemedicine Be a Mainstay for Myeloma Patients After the Pandemic?

Patient Empowerment Network (PEN) and DHH have partnered to help foster change toward achieving equitable healthcare for all. One resource, the Myeloma TelemEDucation Empowerment Resource Center is to significantly improve multiple myeloma patients’ and caregivers’ familiarity with remote access to healthcare, and thus increase quality of care regardless of geographical location. This one-of-a-kind resource center is intended to educate the myeloma community on the practical usage of telemedicine tools, to humanize patient and provider experiences.

Here’s a summary view of the knowledge gained about telemedicine to help provide optimal care to myeloma patients and to aid in receiving optimal care no matter virus limitations, where patients live, and other factors.

Benefits and Limitations of Telemedicine Visits

There are both benefits and limitations of telemedicine visits. Some benefits of telehealth include:

  •   Telemedicine allows care providers the opportunity to determine when myeloma patients really need to be seen in-person.
  •   Standard of care and maintenance treatment are usually a good fit for using some telemedicine visits in clinical trials.
  •   The option to get laboratory work done closer to home is a benefit for saving travel time and from taking time off of work and also lessens patient exposure to viruses.
  •   Telehealth allows care providers the opportunity to meet family members of some patients who can’t make it to in-person visits and to get to know their patients on a more personal level.
  •   Care providers are now able to provide second opinions to patients in other parts of their state and even to some patients across the country.

Unfortunately, some limitations of telehealth include:

  •   Gauging toxicity and other things with new treatments are usually best done along with performing a physical exam.
  •   Some patients only have technology access to talk over the phone and don’t have access to use video due to their device or due to lack of Wi-Fi bandwidth.
  •   Physical examinations cannot be performed via telehealth visits.
  •   Some providers feel it’s more difficult to establish a bond with some patients and to have considerable discussions with then over telemedicine.
  •   Open and honest communication between patients and care providers is sometimes better served in-person.

How to Optimize a Telemedicine Visit

 Just like in-person care visits, telemedicine visits are scheduled with a time limit in mind. Some things to remember about telemedicine visits are:

  •   Try to write down your questions for your doctor or care provider before your appointment to keep on track. Keep it next to you for easy access during your visit.
  •   If patients normally have a friend or loved one join or doctors have a nurse or pharmacist join for in-person visits, have them join your telemedicine visits to help take notes, to ask questions, and/or to provide answers or additional information.
  •   If a video conferencing tool is needed for your visit, install the tool on your laptop, tablet, or smartphone ahead of time to prevent rushing before your appointment. If possible, try to test the video conferencing tool with a friend or loved one a day or so ahead of your appointment.
  •   If there’s anything you don’t understand during the appointment, ask your doctor to explain it again – whether it’s medication instructions, test results, a new medical term, or anything else.
  •   If you feel like a treatment isn’t working well for you, ask your doctor about possible medication or dosage changes.
  •   Just like in-person doctor visits, your doctor or care provider may run a few minutes late. Try your best to remain flexible and to be patient.

Telemedicine and Multiple Myeloma Clinical Trials

To the surprise of some, telemedicine has taken a role in multiple myeloma clinical trials. Currently, and looking to the future, patients can expect:

  •   Telemedicine to continue as an option for follow-up visits along with in-person visits in clinical trials.
  •   Paperwork for clinical trials to be available to complete online for an easier process for joining clinical trials.
  •   Multiple myeloma clinical trials to provide optimal care through the use of both telemedicine and in-person visits.
  •   Telemedicine to provide more options for clinical trial access for those who live in remote areas.
  •   Multiple myeloma clinical trials for quality-of-life studies, engagement studies, educational studies, and possibly others to be available via telemedicine. 

Financial Benefits of Telemedicine 

Telemedicine has brought some financial benefits for multiple myeloma patients, including:

  •   Telemedicine saves the time and costs of traveling to appointments and can reduce or sometimes eliminate the need to take time off from work for an appointment.
  •   The option of connecting with your doctor via telemedicine can sometimes eliminate the need for costly urgent care visits.
  •   The use of telemedicine eliminates the need to find child care for patients and care partners with young children who couldn’t take them along to in-person doctor appointments.

Telemedicine Glossary

Here are some helpful telemedicine terms to know:

  •   HIPAA – HIPAA, or the Health Information Portability and Accountability Act, is a healthcare compliance law providing data security and privacy for the safeguarding of patient medical information. In telemedicine, provider-patient communication must take place through HIPAA-compliant secure platforms.
  •   Patient portal – a secure Internet sign-on that allows patients to contact their provider, review medical tests and records, access health education materials, and seek appointments. Most provider networks develop a patient portal before they move to full video appointments.
  •   Remote monitoring – type of ambulatory healthcare where patients use mobile medical devices to perform a routine test and send the test data to a healthcare professional in real-time.
  •   VPN – a VPN, or virtual private network, is a secure and private way to connect to the Internet over public wireless connections. VPNs are particularly important for those living the digital nomad lifestyle and connecting in foreign countries where networks may be more vulnerable to communication transmission interference.

Now that telemedicine tools continue to increase in use and to be refined, multiple myeloma patients can feel hopeful about improved care and treatment ahead for patients. Diverse Health Hub will continue advocacy work to increase quality of care regardless of geographical location. As a step in that direction, take advantage of the resources below and continue to visit the Myeloma TelemEDucation Empowerment Resource Center for informative content about multiple myeloma and telemedicine.


Resources for Telemedicine and Multiple Myeloma

Are There Limitations of Telemedicine for Multiple Myeloma Patients?

How Will the Pandemic Impact Multiple Myeloma Trials?

Is Telemedicine Here to Stay for Multiple Myeloma Care?

 What Are the Benefits of Telemedicine for Myeloma Patients?

How to Make the Most of a Virtual Visit

Telemedicine & Second Opinion Options

What Are Best Practices for Multiple Myeloma Patients Utilizing Telemedicine?

How Can Myeloma Patients Reduce Infection Risks During Medical Appointments?

Financial Resources for Patients and Families

 Will Telemedicine Mitigate Financial Toxicity for Myeloma Patients?

 Will Telemedicine Be a Long-Term Survival Tool for Myeloma Patients?

A New Phase: Bruce Jackson

Bruce Jackson is a multiple myeloma patient who recently found Patient Empowerment Network (PEN) as a resource for his cancer journey. This is the first of two-part series in which he shares his story from diagnosis to living his life with cancer.


“You can do nothing, or you can do something…maybe it is simply advocating for yourself or advocating on behalf of someone else.”

I guess I haven’t thought of my cancer experience as a story, and yet, that is exactly what it is: a story about a new phase in my life. I have multiple myeloma. More specifically, it is a t(4-14) translocation wherein the 4th and 14th chromosome pairs, instead of minding their own respective business, decided to share their genetic information, and that sharing process is at the basis of the disease. I don’t know if researchers yet know the cause of these translocations; some say that they result from a virus, but I know very little more than that. My 4-14 translocation is deemed a moderately aggressive cancer, but there are other much more aggressive translocations which are functionally a one-year death sentence.

I was diagnosed in May 2009. I was 53 at the time and am now 64. In my case, I was seeing my primary care physician (PCP) every six months for treatment of high cholesterol. She was treating me with a statin drug, and she insisted on doing blood work every six months. The blood work revealed an elevated total protein level, and my PCP suspected cancer, so she sent me to an oncologist who confirmed the diagnosis of smoldering myeloma.

I think there are a couple of points to be made here. One, because of the blood panels every six months, my cancer was caught early. Two, while a smoldering myeloma diagnosis may seem relatively benign, it is not. The question is, when does it morph into something else, into what does it morph, and what do you do in the meantime?

For me, this meant tracking the disease through occasional (every six months) to more frequent (every three months) blood tests to track my M protein value, which is a pretty highly correlated indicator of what is happening in the bone marrow. On a lesser frequency, I would have a bone marrow biopsy, just to see whether what was happening in my blood stream still continued to correlate with what was happening in my bone marrow. When my M protein value was around 0.8, I started to see an oncologist regarding what was initially diagnosed as monoclonal gammopathy of otherwise unspecified origin (MGUS). Then in October 2014, my oncologist was citing M protein values of 3.6, but with no other symptomatic phenomena to address, except that an MRI had shown some very small unidentifiable spots on a few of my ribs and on my sternum. The MRI report suggested that I have a re-do in six months, and that is what happened, except I was now in the hands of a myeloma specialist, and she suggested that we re-test using a CT Scan. The scan revealed growth in the spots, enough so that we were now using the term “lesions”, which was the tipping point to starting treatment.

I started my treatment program as a part of a Dana Farber Cancer Institute study, which required a prescribed regimen of Velkade (a subcutaneous injection), coupled with Revlimid (Thalidomide derivative and sister drug to Pomalyst), and Dexamethasone (a common oral steroid, which generates a synergistic effect that aids in combatting the cancer). In my first cycle, the treatment knocked my M protein value down to less than 1.0. However, in the second round, the treatment induced some unplanned side effects, all at the same time. I experienced blood clots in my lower legs, an obstruction in my digestive tract, pulmonary emboli in my lungs, a half-collapsed lung, a respiratory infection, and a massive headache. This earned me a 10-day stint in the hospital, a paranoid reaction to one of the drugs that I was given, and removal from the Dana Farber study.

Unfortunately, the respiratory infection would not go away, and only six weeks later, it was determined that I needed to have a procedure done, wherein the surgeon puts three holes through my rib cage and inside my pleural cavity with the goal of removing scar tissue from the surface of my right lung so that the medication could reach and eliminate the infection. The procedure earned me 12 more days in the hospital.

The good news is I made it through both events, and I am here to share about it!

It was determined that the Dana Farber dosage was too much for my system, so the solution was to cut the dosage back to about two thirds, and then administer more rounds. My rounds of chemo ultimately led to a stem cell transplant in September 2015. The stem cell transplant was a 21-day hospital stint (which is a typical duration), but as can happen, things didn’t automatically jump-start as expected. After my transplant, everything was jump-starting except my platelets. Fortunately, it seems there is always an alternate plan of attack, and the hematologists were able to prescribe a three-day dose of medication that on day three bumped my platelet count from two to four, and I was on my way. Plan B worked, and I’m glad we did not have to go to Plan C, because I don’t know if there was a Plan C. There were other hiccups along the way. I started having blood clots in my lower legs again, and developed pre-ventricular contractions (PVCs), which feel like a skipped beat, but are actually extra beats, and amount to an arrhythmia of the heart.

After my stem cell transplant, I was given a prognosis of four to eight years, and I was only in partial remission. Once sufficiently recuperated, I had to take Velkade as chemo maintenance. However, because of the subsequent neuropathy, and associated deep venous thrombosis (DVT) in my lower legs, the decision after about two years was to switch to Revlimid. However, the truth of the matter is, your M protein does not stop increasing with the chemo maintenance. It simply increases at a slower rate, and if the drug stops working, problems arise. In my case, the Revlimid worked for another two years, but then things started to happen in 2020.

When the medication stops working, the problems that arise are one of two things: either the rate at which the M protein increases starts to accelerate, or your immune system loses the ability to adequately recover during the seven-day rest period. Your neutrophil (white blood cells) count drops due to the chemo, but if the counts do not climb back up, that means you have to take more days to recover, lower the chemo dosage, or get a booster shot to bump your neutrophils. Any of these options would, of course, allow the cancer to progress at a faster rate. In my case, the neutrophils were dropping and my M protein was climbing, which in essence means the chemo drug was no longer effectively slowing the progression of the disease. It was time to switch to another treatment.

I was given the option to investigate my choices, but because of the myriad options available, that turned into a whole bunch of, “I don’t know”. I finally settled on Daratumumab, Pomalyst and Dexamethasone, with Dara being subcutaneously injected (like Velkade was). Pomalyst is an oral Thalidomide-based sister drug of Revlimid, and Dex is well, Dex. Given that I am only just starting a third post-transplant treatment, I think I am doing well, especially if you consider that I am mid-way through my 12th year post-diagnosis and I am more than five years post-transplant that had an original prognosis of four to eight years.

When you consider where I have been, five years is good so far. I have not had any bones break, my cancer was caught early thanks to a competent PCP, I have only a moderately aggressive translocation, which is much better than more highly aggressive versions, which could have buried me in short order. But what bothers me most, regardless of all the other things that have happened during this experience, is the uncertainty of it all. I feel like I am always waiting for the other shoe to drop.

Learn the rest of Bruce’s story in part two of the two-part series in which he shares his story from diagnosis to living his life with cancer.


Read more patient stories here.

The Warrior in Me Saved My Life

After experiencing increasing fatigue over the course of several years, I started to miss gatherings with friends and family and got to the point of taking one day off a month from work to sleep all day. This was unlike me as I was always very involved with professional and volunteer activities and had a very full schedule including parenting my young son with my spouse. After a lingering cold evolved into bronchitis, I began to explore what was wrong with the assistance of my primary care provider (PCP). I had mild persistent anemia, but nothing to warrant the degree of extreme fatigue that I was experiencing. She (my PCP) was very tolerant of my various Google-induced ideas, graciously accepting some to follow up with tests and others to set aside. 

After eleven months, a test showed that I had elevated M-proteins and my PCP sent me to a hematologist/oncologist who after greeting me reviewed several years’ worth of labs and then turned to tell me to come back in six months. She did not examine me. She did not ask me about my symptoms. She prepared to usher exit the room. I felt that I could not leave her office without her understanding how significantly the fatigue was impacting my daily life. This is when the inner warrior in me said NO! I did not move from my chair. I told her, “Nope. Now is the time that I need to tell you about my symptoms.” (Now this was somewhat uncomfortable for me because I have been well-trained to be polite and professional with doctors, but I had had enough. My New York elbows were coming out!) 

I read from a list that I had prepared detailing what I had been able to do prior to feeling unwell and what I could do now. As I went down the list for several minutes, she looked at her watch in a disgruntled manner, finally asking me “What do you want?” I told her that I wanted to feel well. I did not feel well and believed that something was wrong. I wanted her to do more tests. She agreed and also sent me out to schedule an appointment in six months. One week later at 8 AM as I was on my way out to work, SHE called me to tell me that she had scheduled a bone marrow biopsy (BMB) for the next day. I cleared my calendar. The BMB results confirmed that I had stage 2 Myeloma with more than 80 percent involvement in my bone marrow. My husband and I learned of this on the day before Thanksgiving. We were both in shock. We had so much to learn and at that point had no idea how much this diagnosis was going to change our lives. 

After a quick success of additional tests scheduled STAT, I started chemotherapy within two weeks. Getting a diagnosis took A LOT of persistence and determination when specialists minimized what I knew about my body — that something significant was wrong. And it was. Today is five years to the day of that diagnosis and I still wonder whether I would be diagnosed today if I had not INSISTED upon further testing. To her credit, the oncologist/hematologist did eventually acknowledge that I was right to press her to do more tests and that it was through my self-advocacy that I achieved a diagnosis.

What I would hope that others would take away from this story is how essential it is to be aware of your own body and to keep advocating (again and again) for yourself with doctors even when your symptoms are minimized. I was trained to advocate for others as a social worker, but it took intentional work to give myself permission to say no to doctors at first politely and then later not so politely to demand additional testing until an outcome was achieved that explained my health issues. Be persistent. You know more about your symptoms than anyone else. Do not stop until you find out what is going on with your body.

Checking the Pulse on Multiple Myeloma Health Disparities

Even before the coronavirus pandemic arrived, health and patient support organizations made resolute efforts to examine and address health inequities for multiple myeloma patients in Black, Indigenous, and People of Color (BIPOC) communities. Diverse Health Hub and the Patient Empowerment Network partnered to help improve health outcomes for underserved myeloma patients through the Diverse Partners in Your Myeloma Care program. With a tumultuous year filled with the killing of George Floyd, social unrest, and coronavirus health disparities for BIPOC groups, these issues prompted us to focus on where things stand with multiple myeloma health disparities. We’ll take a look at what we know, what we’ve learned, and what help and resources are needed to continue advancing care for BIPOC myeloma patients.

Disparity Facts About BIPOC Myeloma Patients

  • Both Black Americans and Latina and Latino Americans show a myeloma precursor called MGUS, or monoclonal gammopathy of undetermined significance, more frequently than others—.88 percent in Black Americans, .44 percent in Latina and Latino Americans, and .22 percent in white Americans.

  • Although multiple myeloma is diagnosed at a younger age in both Black Americans and Latina and Latino Americans, both groups are less likely to receive a transplant and start treatment later than patients of other races.

  • Black Americans are actually known to have less aggressive myeloma, which should show better health outcomes—yet that is not the case.

multiple myeloma diagnosis.png

Learnings About BIPOC Myeloma Patients

Black and other BIPOC patients often have mistrust of doctors and researchers due to past experiments like the Tuskegee Study and Henrietta Lacks – whose now infamous immortal HeLa cells were taken without her consent. “If I were to walk into any community, African American community, or underserved community, that is one of the first things. They’re going to be mistrustful of me. And it’s a very difficult barrier to overcome. And that also leads over into African Americans contributing, being donors, African Americans participating in trials. It all feeds over into everything that’s done in the African American community or underserved community in regards to healthcare,” says patient navigator Diahanna Vallentine.

Barriers to care must be overcome according to Dr. Sikander Ailawadhi from the Mayo Clinic, “Myeloma patients who are African-American and Hispanic typically get to the right treatment much later. In a lot of cases they may not get to the right treatment at all. We also know that the burden of cost of care is much higher for minority patients.”

Improvements are happening in care as explained by Dr. Ajay Nooka from Emory University School of Medicine, “What’s really interesting in this meeting is that there has been a lot of large database integrations, including one database called the National Cancer Database (NCBD) where people have looked at 20-year history of how these treatments have panned out. Which of the minority populations or which subset of patients gained the most benefit over the last 20 years? And we see minorities have gotten a lot of improvement and a lot of access to care over the last 20 years, but that’s not the end of the story, we have to catch up a lot more.”

The Path to Health Equity

Although the additional focus on health inequities has started to improve access to care, there is still a critical need to raise awareness about the treatment gaps for myeloma patients in BIPOC populations. How can myeloma patients get the best care no matter where they live when factors like age, geography, socioeconomic status, ethnicity, gender, and insurance type heavily influence the path to better health outcomes?

Some valuable steps that patients, community leaders, and healthcare providers can take to improve care include:

  • Support organizations providing educational materials to patients that are target specific BIPOC groups

  • Patients and advocates making the BIPOC voice heard by asking for funds from community and political leaders to improve care

  • Healthcare providers developing relationships and partnerships with political leaders and support organizations to continue building momentum in improving patient care

  • Patients taking advantage of social workers and patient navigators at their clinics and support organizations

  • Patients, advocates, and healthcare providers working to increase clinical trial participation

  • Healthcare providers integrating cultural competency as a universal approach in the healthcare model

Resources like myeloma patient resource guides, informational graphics, and the Myeloma Coach section on the Myeloma Crowd website provide valuable information for patients. And though trust of clinical trials by BIPOC populations remains an issue, there are initiatives like Diversity in Clinical Trials Benefits Everyone. BIPOC patients can take action working together with medical researchers to increase clinical trial participation to improve and refine myeloma treatment developments for specific patient populations. If you want to explore options in your treatment, seek out resources that embrace diversity in clinical trials. The “All of Us” program is a public health initiative designed to remove the barriers that prevent inclusive access.

Participating in clinical trials not only will improve myeloma treatments down the line but also provides a minimum of standard of care treatment at no cost to the patient. It’s a win-win for both the patient who participates in the study and  also helps the progression of treatment for BIPOC patients diagnosed with myeloma in the future. Though progress has been made, patients, advocates, community leaders, and healthcare providers must take action to continue an upward movement to achieve equitable care that BIPOC myeloma patients deserve. Take advantage of the resources below and continue to visit our Multiple Myeloma Hub as we publish more on health equity developments for multiple myeloma.

Resources to Learn About Improving Myeloma Health Disparities

Disparities Around Health Technology Access for Subset of Myeloma Patients

Good News for Myeloma Treatment Today – Still Addressing Race-Associated Risks

2020 Shaping Up to Be a Big Year for Multiple Myeloma Treatment

How Can a Myeloma Patient Advocate/Financial Advisor Help

Is It Possible to Achieve Health Equity in Multiple Myeloma?

Are Myeloma Clinical Trials More Critical for African Americans?

A Multiple Myeloma Advocate’s Uphill Battle to Care

What Do Disparities in Multiple Myeloma Look Like?

How a Second Opinion Saved a Myeloma Patient’s Life 

Myths vs. Facts: Myeloma Health Disparities Care Infographic

How Can I Get the Best Multiple Myeloma Care No Matter Where I Live? Resource Guide

Diversity in Clinical Trials Benefits Everyone

Sources

How Can a Myeloma Patient Advocate/Financial Advisor Help? Patient Empowerment Network website. https://powerfulpatients.org/2020/08/17/how-can-a-myeloma-patient-advocate-financial-advisor-help/ Accessed October 19, 2020.

Communicating About Cancer: A Brief Guide to Telling People Who Care

Getting a cancer diagnosis can easily be the most terrifying, heart-wrenching experiences one has in their lifetime. Everything from different treatment options (if you’re lucky), to financing, and maintaining quality of life suddenly are in full force front and center. It can be hard to know who to turn to if you’re not directed to a support group (of which there are many), and especially how to tell loved ones and co-workers. The choice is yours, of course, in whom you wish to tell and when – there is no right or wrong answer. (However, I and many others have found that having a caregiver to help manage appointments, billing, etc. can help).

Should you choose to tell others, here are some tips that I have read and/or heard from other cancer patients/survivors as well as some I have found personally helpful:

Kids:

  • It depends on the age – using simpler terms with younger kids (8 and under) may be more helpful, while older kids and teens can understand more detail. For example, saying that you’re sick and you’re getting the best care from a team of doctors who really want to help you get better
  • According to the American Cancer Society, children need to know the basics, including:
    • The name of the cancer
    • The specific body part(s) of where it is
    • How it’ll be treated
    • How their own lives will be affected
  • Think of a list of questions ahead of time that you think they may ask and jot down answers, such as how the cancer happened (that it’s not anyone’s fault), if it’s contagious, and/or if it’ll be fatal
  • Make sure that they know you are open to talking about it at any time. You can also perform check-ins with each other to monitor feelings

Family and friends:

  • Select a group of people, including immediate family and close friends
  • Divulge information only you feel comfortable sharing. Maybe it’s the basics, as mentioned above, or more detailed information
  • Prepare for different reactions, including sadness, anger, frustration, depression, anxiety, compassion, and support
  • Also prepare for people to not feel comfortable and feel as if they’re helpless. A cancer diagnosis is a heavy weight to bear, and not everyone will feel like the have the capacity to help as much as they want to
  • As the patient, tell them how you’re looking for support (ex. what are your needs during this time, including physical, emotional, mental). Guiding members of your support system to get your needs met may help them feel more at ease and able to help

Work:

  • Telling a supervisor/manager may be one of the hardest tasks for fear of discrimination
    • However, the Americans with Disabilities Act (ADA), which covers employers with 15 ore more employees, prohibits discrimination based on:
      • Actual disability
      • A perceived history of disability
      • A misperception of current disability
      • History of disability
    • The ADA also:
      • Protects eligible cancer survivors from discrimination in the workplace
      • Requires eligible employers to make “reasonable accommodations” to allow employees to function properly on the job
      • Ensure that employers must treat all employees equally
    • The Family and Medical Leave Act (FMLA) also gives you the right to take time off due to illness without losing your job
      • However, an employee must have worked for his or her employer for at least 12 months, including at least 1,250 hours during the most recent 12 months in order to qualify. The law applies to workers at all government agencies and schools nationwide as well as those at private companies with 50 or more employees within a 75-mile radius
    • The Federal Rehabilitation Act prohibits employers from discriminating against employees because they have cancer
      • However, this act applies only to employees of the federal government, as well as private and public employers who receive public funds

Sources:

Notable News February

At this point in the year many of us have already given up on our New Year’s resolutions, but if your resolution was to lose weight this year, it might be time to revisit it, especially if you are a young adult. A study reported by cnn.com reveals that obesity-related cancers are increasing among the 24 to 49 year old age group, and the risk is increasing at progressively younger ages. There are six cancers that showed increases in younger adults — colorectal, endometrial, gallbladder, kidney, pancreatic, and multiple myeloma. These cancers are traditionally found in people in their 60s and 70s, but now the risk of these cancers in millennials is almost double what it was for baby boomers when they were the same age. More information about the study and the connection between obesity and cancer can be found here.

The increase in cancer rates in younger adults is alarming, but being able to detect the disease at an earlier stage increases the chance for survival. Pancreatic cancer is a cancer that is difficult to diagnose early. It is almost always diagnosed at an advanced stage and about 95 percent of people diagnosed with it will die of it. Now, Norwegian researchers may have a clue into better understanding pancreatic cancer which could eventually lead to earlier diagnosis, reports sciencenordic.com. The researchers learned that there may be a connection between blood type and pancreatic cancer. People with blood type A have a slightly increased pancreatic cancer risk and people with blood type O seem to have a slight protection from the disease. The differences in risk are small, but the data is consistent to studies in other countries and may provide insight into better understanding the disease. Researchers hypothesize that intestinal flora, the immune system, and digestive enzymes may play a role in the contraction of the disease and give researchers a direction for further study. Learn more here.

While not on the list of cancers being found more often in younger adults, prostate cancer remains the most common cancer among men. Typically, it can be successfully treated, but the cancer often spreads making more aggressive treatment necessary. Unfortunately, there’s been no way of knowing when or if the cancer will spread — until now. There’s a specific gene responsible for the spread of prostate cancer, reports medicalxpress.com, and a study at Rutgers University has found it. The NSD2 gene, which indicates when patients are at high-risk for the cancer to spread, was found through a computer algorithm. Researchers were able to turn off the gene in mice and prevent the cancer from spreading. Being able to identify when the cancer may spread will allow for more targeted treatment and prevention. Also, it might be possible to use the algorithm for other cancers as well, which is good news for everyone. More information about the NSD2 gene and the computer algorithm can be found here.

No matter what age someone gets cancer, pain can often be a side-effect of the cancer itself or of the treatment. Pain occurs in up to 50 percent of people with cancer. Cancer-related pain is real, and it can last long after treatment, but cancer.gov says that there is renewed interest in seeking new, non-addictive pain medications, as well as other pain management solutions, for cancer patients and survivors. Medications are being developed, and options such as cannabinoids (chemicals found in marijuana), are being explored to treat bone pain and pain in the head and neck from oral cancers. Pain is also a side-effect of treatments such as chemotherapy, and prevention is being sought for that type of pain as well. Non-drug treatments that are being considered are yoga, Tai Chi, and mindfulness meditation. There is much, much more to be explored about the potential for pain management, but more about what is already being done can be found here.

Alleviating the pain of cancer whether through pain management, early diagnosis, or preventing the disease from spreading is definitely a step in the right direction for ensuring that all patients are empowered patients.

Advice For Newly Diagnosed Patients #patientchat Highlights

Last week, we hosted an Empowered #patientchat on advice for newly diagnosed patients. The #patientchat community came together and shared their best advice and tips.

The Top Tweets and Advice…

 

Ask Questions

 

 

 

 

Seek a Second Opinion

 

 

 

 

Stay Informed


Full Chat

Finding Your Voice #patientchat Highlights

Last week, we hosted an Empowered #patientchat on finding your voice and what stops patients from seeking a second opinion.

A second opinion is crucial to prevent misdiagnosis or unnecessary procedures or surgeries. A study done by Mayo Clinic showed that as many as 88% of patients who get a second opinion go home with a new or refined diagnosis. That shows that only 12% of patients receive confirmation that their original diagnosis was complete and correct. Still, a lot of patients never get second opinions. So, we wanted to chat about this and see what the Empowered #patientchat community had to say, and these were the main takeaways:

The Top Tweets…

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 


Full Chat

Finding the Funny When the Diagnosis Isn’t

It’s not easy hearing your name and [insert dread diagnosis here]. I know this only too well after having to find the funny in my own journey through cancer. Cancer is, however, most often a diagnosis that you fight to a defined end. What’s it like to find the funny in a chronic condition like multiple sclerosis, or HIV, or diabetes?

I have a number of friends dealing with the life-long aftermath of an MS diagnosis. One of them tipped me off to Jim Sweeney several years ago. Jim’s MS journey started with vision problems in 1985, he was officially diagnosed in 1990, and has been wrestling with the impact of that diagnosis – finding the funny most of the time – ever since. Jim’s body of work includes decades of live improv, and his one-man show “My MS & Me,” which you can hear on the BBC Radio 1 site. His MS has progressed to the point that he’s now in a wheelchair, and his public presence is mostly limited to Twitter, where his profile says he “can’t complain but sometimes do,” and YouTube.

Some other sterling examples of funny-or-die in managing chronic disease are Mark S. King’s fabulously funny My Fabulous Disease blog. Mark is HIV+, so he shares information, resources, and myth-busting about all things HIV in his posts and videos. He’s brutally honest about pretty much everything, with plenty of humor to soften the impact of what it’s really like to live with what anti-retroviral treatments have made a chronic illness, not the death sentence it too often was in the first two decades after the viral epidemic started in 1980.

Then there’s the “laugh out loud at the absurdity” Six Until Me site from Kerri Marrone Sparling, who writes about her life as a Type 1 diabetic. She covers everything from exceedingly random TSA security agent behavior when confronted with diabetes-related medical devices, to “pregnant while diabetic” to dealing with the emotional impact of living with a busted pancreas, all with a good dose of highly-readable snark.

How much courage does it take to laugh out loud, in public, at an incurable disease? Jim, and Mark, and Kerri certainly have courage – and comedy chops! – at the level required.

On the provider side, there are a number of docs who are breaking up the waiting rooms and wards.

The most visible of these comedic clinicians is Dr. Zubin Damania, a/k/a ZDoggMD  – “Slightly Funnier Than Placebo” was his tagline for years, before he shifted to “The Voice of Health 3.0.” ZDogg is a hospital medicine specialist who’s built an empire of snark over the last decade plus, some G-rated and some most definitely NSFW. His videos alone guarantee hours of laughter, and he’s one of the best users of Facebook Live around.

I’ve even found a scholarly article entitled The Use of Humor to Promote Patient Centered Care – be warned, though, that (1) it’s a “scholarly article,” meaning that it’s had all the laughs surgically removed and (2) they want $42.50 for it. You have been warned.

What’s my point here? I actually have two:

1. Laughter really is the best medicine.

Humor keeps us in touch with our humanity, and – unless it’s insult comedy, which I do not recommend in the health care arena, unless it’s insulting bad health care – it helps to comfort others in the same situation.

2. Patients and providers need to work together to help each other find the funny.

If you’re a doctor, don’t just say “you’ve got [insert dread diagnosis here], here’s the treatment plan, call if you have any questions, … NEXT!” Look your patients in the eye, and channel your inner comedian whenever it’s appropriate. If you’re a patient, connect with other people in your situation and see how they’re finding the funny. And help your doctors find their funny. If they can’t find it, you should find another doctor.

We all need to work together to break each other up. Laughter can comfort, can calm, it can even heal.

That’s real disruptive health care, no prescription required.

What Does It Mean To Be An Empowered Patient?

The term “patient empowerment” is among the top buzzwords in health care circles, but as with many buzzwords, they can mean different things to different people.  The term is most often used to emphasize the value of having patients assert greater control over their health and health care.  WHO defines empowerment as “a process through which people gain greater control over decisions and actions affecting their health” (WHO 1998).  This shift is due in large part to the use of technology that facilitates increased patient access to information via the Internet, peer-to-peer sharing, consumer health devices, and mobile apps.

In a recent Twitter chat, I set out to explore what it means to be an empowered patient today.  The global participation of those who shared their views on the topic shows that patient empowerment is something of universal interest.

Seven Essential Components of Patient Empowerment

1. Information

Information is fundamental to the process of patient empowerment.  Rare disease advocate and parent, Anne Lawlor (@22Q11_Ireland) believes that “an informed educated parent is an empowered one.”  Patients make the best decisions when armed with the right information.  To make genuinely informed decisions about our treatment we must have access to the relevant information needed to make those decisions. “Being informed is key to empowerment for me,” says specialist palliative care social worker, Deirdre McKenna (@KennaDeirdre). “Accurate information, clearly communicated and an available space to discuss and explore options and choices.”

Research shows that access to the right information, at the right time, delivered in the right way, leads to an increase in a patient’s desire and ability to take a more active role in decision-making.  Open and transparent communication and access to a patient’s own medical records is a key driver of patient empowerment. Medical Director and Consultant Surgeon, Dermot O’Riordan (@dermotor) believes to truly empower patients “we should be aiming for the “Open Notes” principles of default sharing of all documents.”    As patient advocate and CEO of Medistori Personal Health Record, Olive O’Connor (@MediStori) points out, “the patient is at the very core of every single service they use – they know everything there is to know about themselves, in the home and outside of it. Yet patient records are not kept with them!”

The OpenNotes initiative began in 2010 as a year-long demonstration project, with 105 primary care physicians at three diverse U.S. health care centers inviting 20,000 patients to read visit notes online through patient portals. Findings from the study suggest that shared notes may improve communication, safety, and patient-doctor relationships, and may help patients become more actively involved with their health and health care.  Evidence also shows a sixty percent improvement in the patient’s ability to adhere to medications, a major problem with managing chronic pain conditions. What is key to the discussion on patient empowerment is that this initiative “demonstrates how a simple intervention can have an enormous impact, even absent advanced technology” (my emphasis).

2. Health Literacy

While access to information is a key driver of patient information, health literacy is defined as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.” (National Library of Medicine).  Health literacy should come before digital literacy. “Health literacy is crucial,” says healthcare analyst, Matthew Loxton (@mloxton), “and you cannot get empowerment without health literacy.” Soo Hun (@soo_cchsc), Programme Manager at the Centre for Connected Health and Social Care, believes “digital is a key aspect but health literacy, even basic literacy is a must. Not all things digital requires tech know-how but all health information requires basic literacy. An app for meds reminder is no use if a patient lacks understanding of why medication is needed in the first place or why they need to be taken promptly.  We spend too little time transferring knowledge to patients.”

This transfer of knowledge is crucial to the empowerment process, according to Olive O’Connor. “At the first point of contact with the patient,” she says, “education on how, what, why, where and when in relation to a condition or medication should be talked through fully. All other tools (digital, leaflets etc.) should come after the conversation which is key to empowerment.”

3. Digital Literacy

Cornell University defines digital literacy as “the ability to find, evaluate, utilize, share, and create content using information technologies and the Internet.”  It’s interesting to note that opinions vary on whether digital literacy is essential to patient empowerment. RN turned patient advocate and health activist, Kayoko Ky Corbet (@kkcorbet) doesn’t believe that “digital literacy is an absolute requirement, but the ability to find accurate relevant information, and understand the information is.” Breast cancer advocate, Jennifer (@vitalfrequencis) agrees that “digital literacy is not fundamental and should not be part of the equation. Empowerment needs to be across all socioeconomic groups. Otherwise…a whole bunch of patients may never be empowered.”

Dermot O’Riordan is convinced that “whilst it sounds nice to say that digital is not ‘necessary’ for patient empowerment, in practice it is going to be pretty tough to do it properly/completely without digital.” Transplant recipient and rare disease patient, Carol McCullough (@Imonlyslightly ) also believes “digital literacy strengthens the empowerment process.” She too points to “access to your medical information online” as a key component of the empowerment process. “Knowing your personal medical data is strength, as is education about your illness,” she says.

Maternity campaigner, SeánaTalbot (@SeanaTalbot) believes that “those with long-term conditions and access to technology have a better chance of accessing information and support.”  Indeed many patients have found in the online world of peer-to-peer healthcare an environment in which they are supported to become a more empowered participant in their healthcare. As I look back on my own empowerment journey, my progress was advanced step-by-step by learning more about my disease initially from doctors, then through Internet searches, and most helpful of  all  through patient peers online. Finding and being part of a patient community can be an important step on the path to empowerment.

4. Self-Efficacy

Self-efficacy, as it relates to healthcare, is belief in your ability to effect change in outcomes so that you can achieve your personal health goals. The patient empowerment definition which comes to us from the European Patient Forum describes empowerment as a process that “helps people gain control over their own lives and increases their capacity to act on issues that they themselves define as important.”

Developing a sense of personal control over your health is in itself empowering. The empowered patient is confident in their ability to manage their condition. When unsure about where to go or what to do next they will feel confident to ask questions of the healthcare professionals providing their care.  This confidence comes easier to some than others, and even the most confident may need guidance from their doctors in managing their disease. Endocrinologist, Iris Thiele Isip Tan, MD (@endocrine_witch) points out that “some of my patients are surprised when I teach them how to adjust/titrate insulin doses. Apparently not all MDs ‘allow’ this. Some need handholding because they get anxious about the responsibility.”

Digital leader and physiotherapist, Linda Vernon (@VernonLinda), believes “for authentic patient engagement to occur, we need to establish what the patient brings to the table, something akin to an individual, personal take on Asset-Based Community Development – perhaps we could think of it as Asset-Based Personal Development, supporting the patient to tap into their own internal, community or environmental resources to improve their health and wellbeing.  Engaging patients should be as much about exploring what they can do for themselves and to help the health and care system, as what we professionals can offer to the patient.”

5. Mutual Respect

The healthcare professional is the most important contact point for the patient and the system and (dis)empowerment often manifests in the patient/professional relationship. At the heart of the empowerment approach is seeing the patient-professional relationship as a partnership of equals.  Carol McCullough describes it as a reciprocal process of “mutual respect for what each person knows and being allowed to make informed choices. It is not about command and control.”

This is a partnership approach that seeks to balance clinician expertise with patient preference. It recognizes that while healthcare professionals are the experts in their knowledge of a disease, patients are the experts by experience. The empowerment process is about sharing both knowledge and experience to set new goals and learn with and from each other. Dr Kit Byatt (@Laconic_doc) agrees. “Many patients are experts”, he says, “especially rare disease patients.  I’ve learned from many in my career.”

Building better relationships and seeing the patient as more than ‘just a patient’ was a recurring theme in the Twitter chat. Elena Vaughan (@StigmaStudyIE), who is researching the impact of HIV-related stigma in Ireland, believes that “an empowered patient is treated with respect, involved in shared decision-making regrading care and treatment, and is not patronised. For people with chronic conditions, effective communication, continuity of care and establishing a relationship of trust is very important.” Sometimes, as ME blogger and patient advocate, Sally Burch (@KeelaToo) points out, “not all patients are lacking confidence to speak. The problem is being heard.”

Patient and community advocate, Triona Murphy (@Murpht01) advises doctors to get to know your patients as individuals.  “Know your patient!!…and their family,” she says. “No one size fits all! BUT there was/is still a culture of the ‘person’ stops at the door of the hospital and that person is now a patient.’”  As antibiotic resistance campaigner, Vanessa Carter (@_FaceSA) says, “I might be a patient but I am also a creative director by profession. No one recognises me on that level. They see me as an underdog.”

6. Shared Decision Making

This partnership approach allows for Shared Decision-Making (SDM) – the conversation that happens between a patient and clinician to reach a healthcare choice together. Examples include decisions about surgery, medications, self-management, and screening and diagnostic tests. There is ample research which suggests that health outcomes are better in patients who are more involved in decisions about their treatment.

In the SDM model, the clinician provides current, evidence-based information about treatment options, describing their risks and benefits, and the patient expresses his or her preferences and values. Matthew Loxton points to how seldom we have metrics to track whether patient goals are being met. “Yet this,” he believes, “is THE most important part of quality.”

7. A Facilitating Environment

Linda Vernon defines patient engagement as “activating the person’s inner assets and supporting them to make the best use of them.” Being supported is a key component of patient empowerment. Many patients would like to take more responsibility for their own health and care, given the opportunities and support to do so. Empowerment does not happen in a vacuum: it is a two-way process. The patient needs a counterpart in the health professional who welcomes the patient’s involvement and knows how to create an enabling healthcare environment. Kayoko Ky Corbet states she became an independent patient advocate when she realized most doctors simply do not have the time (and often skills) to take this facilitating role and promote shared decision-making that patients desperately need. As Patient Critical Co-op (@PatientCritical) puts it, “if you have a patient who wants to advocate for themselves, and become informed, you also need a doctor that respects the patient’s right to share decision making.”

Is It Empowerment or Participation?

Not everyone likes to use the term “empowerment”, as it implies that it is an authority given to someone to do something. “I balk at the idea that professionals can ‘give’ (usually on their terms) power to the powerless,” says Alison Cameron (@allyc375). “We need to create conditions whereby people can “empower” themselves.” Seána Talbot agrees that patient empowerment “doesn’t mean ‘giving’ people power.’ Rather it’s about ‘enabling’ them to recognise and use their power.”

Perhaps the term ‘participation’ (which is a more active state) is preferable? This distinction is important because empowerment cannot be imposed ‘top down’ (although it can be facilitated).  Sharon Thompson (@sharontwriter) believes that “patients should not be pressurised or need to be in a position of ‘power.’ It should be automatic that a patient is central and key to their care. Patients are automatically empowered when they are respected as being people who are entitled to understand and know about their care.”

Neither is patient empowerment about the patient taking full control or shifting responsibility to the patient.  “If the empowerment amounts to abandonment”, says Matthew Loxton, “then the patient’s health goals are not being met. Patient empowerment should never be an excuse for abandoning or burdening the patient.”

Rather, the empowerment approach, as defined by the European Patient Foundation (EPF) “aims to realise the vision of patients as ‘co-producers’ of health and as integral actors in the health system.”  Caregiver Reinhart Gauss (@ReinhartG) agrees that “patient advocates want to work with not against doctors – to share experiences and to grow in knowledge.”  Vanessa Carter is clear that “we still want our doctors, but they are not there 24/7 so patients need the right tools to make self-care possible.”

Equally, it is about recognizing that there are degrees of involvement and not all patients wish to be ‘empowered.’  There is a spectrum of interest in wanting to assume an active role in care – from being passively receptive to fully engaged. It is up to the patients themselves to choose their own level of engagement. Pharmacist Chris Maguire (@chris_magz) sees this choice as the essence of empowerment. Patients “get to decide how much they want to look into things and take control. Or they want to be guided on the journey and have trust in their healthcare providers. But the key is that they decide the level of interaction and are not dictated to.”  Kayoko Ky Corbet agrees that “true patient empowerment should be about helping patients get involved at their highest potential or at the level they choose.” However, she says “it’s also important to keep the option of involvement open. Ideally patients should get opportunities to change their minds to participate in decision-making later.”

Empowerment as an Ongoing Process

Empowerment is a non-binary, non-linear process. Your needs may change over time. You might feel empowered in a certain context, but disempowered in another. Healthcare communicator, Michi Endemann (@MichiEndemann) makes the distinction that “talking about empowerment as a healthy person is quite different than talking about it as a patient.”  As patient advocate, Rachel Lynch (@rachelmlynch) puts it, “it can be quite tiring being empowered when all you want to be is well.” A sentiment echoed by Kathy Kastner (@KathyKastner), founder of Best Endings, who clarifies how “to me ‘empowered’ assumes I’m feeling physically and mentally up to the task of ‘being engaged’. I’ve seen powerhouses who cannot bring themselves to take responsibility for their own health.”

Mental health advocate and co-founder of #DepressionHurts, Norah (@TalentCoop) calls attention to the fragile nature of empowerment. “Even the strongest can quickly feel disempowered by a deterioration in health,” she says. “Fear disempowers. Sometimes it’s a case of ‘can’t’ not ‘won’t.’”

For those who feel ready for a greater degree of participation in their healthcare (and that of their family and loved ones), Jennifer advises that “being willing to self-advocate, along with self-confidence, communication skills, compromise, research skills, and relationship building” are some of the key traits and skills you need to become an empowered patient. Terri Coutee (@6state), patient advocate and founder of DiepCjourney Foundation, adds that “empowered patients do their research, ask questions, go to appointments organized, and take a friend to help listen.”

Barriers to Patient Empowerment and Overcoming Challenges

What are some of the current barriers to involving patients more in their care? Jennifer points to a “lack of adequate time during the doctor’s visit (on both sides), language barriers, technology barriers, generation gaps, and cultural gaps.”  The solution?  “All solved by building good relationships,” says Jennifer.

Norah also calls attention to the technology barriers. “For older patients simple things like communication (hearing), or uninformed changes are extremely disempowering; as is over reliance on technology for a generation who may not have ‘tech’ understanding or access.”  Tim Delaney (@FrancosBruvva), Head of Pharmacy at a leading hospital in Ireland highlights the fact that “in acute hospitals we treat huge numbers of elderly people whose engagement with social media and new technology is lower. We need to design technology that meets their usability needs AND use whatever suits them best be it old tech or new.” Soo Hun agrees that “the tech savvy few have quicker and better access to health information and therefore can have choice and autonomy. To reverse that we need to make technology ubiquitous and make health information and choice easily accessible.”

Whilst Vanessa believes it should be “governmental policy to have digital resources in place, for example, disease specific websites / apps supported by health authorities,” Kayoko believes it can start with “tech-savvy advocates (like me) who could help patients learn to use simple digital tools.”

Matthew Loxton sees a core barrier to empowerment to be “the large knowledge/power gradients between patients and health care providers. Without access to their data, trustworthy sources of medical knowledge, and the power to execute their choices in achieving health goals, empowerment is an empty phrase.”  Triona Murphy echoes this systemic challenge by clarifying that “the whole system needs to understand the patient’s right to be equal partners in their care. IF that is what the patient wants.”

Sometimes the fear of being labelled a difficult patient can be a barrier to empowerment. “Some patients feel uncomfortable challenging the judgement or actions of their caregivers for the fear of being labelled as ‘difficult’, of offending staff and/or because of concerns of compromising their healthcare and safety,” says Tim Delaney.

Final Thoughts

Not everyone wants to be empowered in making decisions about their care, and not every doctor wants to take the time. Some doctors use medical terminology which is incomprehensible to patients, while some patients have low health literacy skills or come from cultural backgrounds that lack a tradition of individuals making autonomous decisions.  That said, Carol McCullough points out that while “not everyone may want to be empowered, for the health service to be sustainable, more people are going to have to take on more responsibility.”

Medical Doctor and Chair of Technical Advisory Board, Pavilion Health, Dr Mary Ethna Black (@DrMaryBlack) points to the inevitability of the shift towards patient empowerment. “Empowerment is an inevitable shift that is happening anyway, “she says. “We cannot turn back the tide or turn off the internet.”

Kayoko Ky Corbet agrees that we “must understand that patients making informed decisions is the ultimate way to reduce waste, pain and regrets in healthcare. It’s also morally the right thing to do!”  Patient Critical Co-op also believes in the moral imperative that “empowerment essentially means a group or society recognizing your right. Patient empowerment exists as an action patients can take to improve themselves, but the key to achieving that improvement is having a group, organization, or state enshrine and recognize those rights.” In fact, the Alma Ata Declaration defined civic involvement in healthcare as both a right and a duty: “The people have the right and duty to participate individually and collectively in the planning and implementation of their healthcare.” The Declaration highlights the collective dimension of empowerment and the importance of action towards change. By working together to think internationally and act nationally we can draw on each other’s experiences so that as individuals and as a collective we can work towards better outcomes for all patients.  To quote Terri Coutee, “When we gather our collective empowered voices, we feel a strong responsibility to give voice to others.”


I would like to acknowledge the assistance of Dr Liam Farrell in facilitating the Twitter discussion on which this article is based.


2020 Update: Patient Empowerment Revisited: What Does It Truly Mean To Patients?

 

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Patient Advocacy: Understanding Your Illness

The news that you, or a loved one, has a serious illness can be a terrible blow.  You may be faced with an array of emotions ranging from shock to fear to anxiety. You will likely have many questions and concerns about what the coming days and months will bring, and the impact living with this illness will have on your life and the lives of your family. Although you may be reeling from the news, it’s important that you learn as much as you can about your diagnosis, its symptoms, how it may progress and what treatment options are available. In this article, you will learn which questions you should ask your healthcare team and where to find reliable and trustworthy information to become better informed about your health condition.

1. Obtaining Information From Your Doctors And Healthcare Team

Having answers to your questions can help you understand your illness better and feel more in control about your treatment decisions.  How much information you want is up to you. Some patients feel overwhelmed by too much information at this stage.  Others say they didn’t receive enough information.  While information upon first diagnosis is vitally important, you may be in shock and in a heightened emotional state which makes it difficult to fully comprehend all the information you are given. If possible, bring a trusted friend or family member to appointments with you to take notes. If this is not possible, ask your doctor if you can record the consultation so you can focus on listening, and go back and review what was said later.

Medical care is a conversation and to have influence in that conversation you have to speak up. Never be embarrassed to tell your healthcare team if you don’t understand something they’ve said. Sometimes doctors use medical jargon without realizing they are not explaining things in terms we understand. Repeat what the doctor has told you to be sure you understand and ask for clarification if needed.

Some questions to ask your doctor about your diagnosis:

  • What are the symptoms of this illness?
  • What should you do if you notice new symptoms or if existing symptoms worsen?
  • Do you need any further diagnostic tests?
  • What are your treatment options?
  • What are the side-effects of the recommended treatment?
  • What are the benefits vs the risks?
  • What happens if you do nothing?
  • Are there other treatment options available?

Finally, ask your healthcare team if they can recommend further reading, support groups and other resources to help you learn more about your illness.

2. Finding Reliable Information Online

As you move along the patient journey and better understand your illness, you may want higher levels of information. However, you may find the information healthcare professionals provide has not keep pace with your increased needs. This is the point where many patients turn online to seek more information. While the Internet can be a useful source of health information, it’s important to know how to critically evaluate the information you find online. Always discuss what you find with your healthcare team and ask them to put the information into context for your particular situation.

Here are some questions to help you determine the trustworthiness of online sources of information.

  • Who has produced the information?
  • Does the organization have commercial interests or another reason they are promoting this information?
  • Is the name of the organization and their aims in setting up the website clearly shown?
  • Does the site provide contact details if you have any questions?
  • Is the information on the website up to date?
  • Does it cite the source of the information that is being presented?
  • Does the site link with other reputable sites that give similar information?

3. Evaluating Medical News Reports

Whether it’s published in hard copy or online, medical news reports can mislead people into thinking a certain drug or treatment is the next breakthrough in a disease.  As patient advocates we must learn to read beyond the headlines to filter out the good, the bad, and the questionable.

The following questions will help you evaluate the reliability of medical news reporting.

  • Does the article support its claims with scientific research?
  • What is the original source of the article?
  • Who paid for and conducted the study?
  • How many people did the research study include?
  • Did the study include a control group?
  • What are the study’s limitations?
  • If it’s a clinical trial that is being reported on, what stage is the trial at?

Always try to read an original study (if cited) to critically evaluate the information presented. Understanding research literature is an important skill for patient advocates. For tips on how to read a research paper click on this link.

4. Learning From Peers

From helping us to uncover a diagnosis and finding the right doctors and treatments, to learning about everyday coping tips, turning to our peers can make all the difference in how we live with our illnesses.  Much of this peer-to-peer learning takes place through social media discussions on patient blogs and in Facebook groups and Twitter chats. On Facebook you can connect with other patient advocates and join Facebook groups related to your disease or health condition. On Twitter you have a greater mix of patients, physicians, healthcare professionals and medical researchers coming together to discuss healthcare matters. It is becoming increasingly popular for attendees at key medical conferences, such as ASCO, to “live-tweet” sessions. You can follow along on Twitter using the conference hashtag which you should find published on the conference website. Another way to learn on Twitter is to join a Twitter chat related to your health condition. Twitter chats can be one-off events, but more usually are recurring weekly chats to regularly connect people. There are chats for most disease topics and a full list can be found by searching the database of the Healthcare Hashtag Project.

Final Thoughts

Understanding your illness is the first step on the path to advocating for yourself and others.

Being an advocate involves asking lots of questions, conducting your own research, and making your preferences known to your healthcare team. By doing this, you will be better informed and in a stronger position to get the treatment that is right for you. If this feels overwhelming to you right now, go at your own pace, and reach out to others who have walked this path before you. There is an army of patients who are standing by, ready to share their healthcare wisdom and practical coping tips with you. Seeking their advice will help lessen the fear and isolation you may be feeling, give you a sense of shared experience and connection, and help you feel more in charge of your healthcare decisions.

Fact Checking 101: Health Literacy in Real Time

There’s a medical miracle every day, if you believe headlines on popular media sites. If you just read those headlines, cancer is cured daily, as are hepatitis C, and a host of neurological conditions. Dive into the stories, though, and you’ll all too often find the “in mice” red flag, meaning that scientific experiments have indicated that mice are having terrific outcomes from whatever substance is being touted. Humans? Not so much.

Information flows at the speed of life – thank you, Internet – but information does not always equal factual truth. Which is where fact checking comes in, and what I’ll be offering tips on here. As a journalist, I’ve hunted down confirmations on stories for years – here’s a quick primer on doing it for your own health/science literacy building.

  • Snopes.com: this site is the granddaddy of online myth busting. They have a dedicated channel for health news, which is definitely a good first stop to fact check a headline touting a “cure” for an illness or condition.
  • Sense About Science USA: the US arm of the UK-based Sense About Science and AllTrials, this site takes a deep dive into advocacy and literacy building for both the public, and professionals, around medical science. They’re in the process of creating an AllAccess Patient Guide on clinical trial participation, and transparency in reporting on all trials, which will be published in the fall of this year (2017).
  • Health News Review: the editors and reviewers behind this site are professional healthcare journalists dedicated to reading and scoring the reporting on health science in major media. I think of them as Politifact For Healthcare – they don’t issue “pants on fire” or “Pinocchio” warnings, but their 5-star review system is rigorous, and great reading.
  • FactCheck.org and FlackCheck.org: these sites assess news stories and sources in many categories, from politics to science to health policy. They’re produced by the Annenberg Public Policy Center at the University of Pennsylvania, and are great resources for fact checking in all news categories, not just science.
  • Retraction Watch: this is in the Super Science Nerd Journalist zone, covering the retraction of scientific papers around the world. There’s an old news adage about corrections being buried deep beneath the front page – that rule goes double in science publishing. A paper is published, and makes big headlines. If it’s retracted weeks/months/years later, there’s seldom a screaming headline announcing the retraction, leaving the untruth out there to be misunderstood and often misused.

Building your own health and science literacy is a process. Reading the latest medical science news is a starting point, but you have to add fact checking as a critical part of your learning curve. Then use the “see one, do one, teach one” method to help your friends and family build their health literacy, teaching them how to find and fact check the science news that matters – that’s how we all build healthy, science-literate communities.

How to Weigh Up the Benefits and Risks of Treatment…and Why It’s Important That You Do

Do clinicians have accurate expectations of the benefits and harms of treatments and screening tests?

new study in JAMA Internal Medicine concludes not. In a systematic review of 48 studies (13 011 clinicians), the researchers found that clinicians rarely had accurate expectations of benefits or harms, more often underestimating harms and overestimated benefits. Among the findings, obstetricians and neurologists underestimated the risk of birth defects from anti-epileptic drugs and GPs overestimated the benefit of prostate cancer screening. Transplant surgeons were biased towards an inaccurately low estimate of graft failure and all types of doctors were unaware of the risk of radiation exposure from imaging.

What do these findings mean for patients? Inaccurate clinician expectations of the benefits and harms of interventions can profoundly influence decision making and the standard of care patients receive. Patient activist, blogger, and author of the upcoming book “Heart Sisters: A Survivor’s Take on Women and Heart Disease” (Johns Hopkins University Press, November 2017), Carolyn Thomas, believes this to be “a consistently systemic issue for patients, too: most believe medical interventions will help more/harm less than they actually do”. It’s a wake-up call for patients who have a critical role to play in understanding and weighing up benefits and risks for ourselves, in order to get better treatment. And it’s a further reminder of the importance of shared decision making to reach a healthcare choice together, as opposed to clinicians making decisions on behalf of patients.

However, understanding the risks associated with a treatment is not necessarily straight-forward. The challenge for busy clinicians is that there isn’t always the time to read and digest the latest research to inform their practice. Medical commentator, physician, and cancer survivor, Elaine Schattner, believes that because medical knowledge changes so rapidly it’s hard for clinicians to keep pace. “This may be especially true in oncology,” she points out, “as patients become expert in their own conditions and needs, they may prefer to look up information on their own, and share their findings with their physicians.”

A lengthy article published this month in ProPublica, examines what it calls “an epidemic of unnecessary and unhelpful treatment” requested by patients and delivered by doctors, even after current research contradicts its practice. “It is distressingly ordinary for patients to get treatments that research has shown are ineffective or even dangerous”, writes David Epstein. “Some procedures are implemented based on studies that did not prove whether they really worked in the first place. Others were initially supported by evidence but then were contradicted by better evidence, and yet these procedures have remained the standards of care for years, or decades.” Epstein points to a 2013 study which examined all 363 articles published in The New England Journal of Medicine over a decade — 2001 through 2010 — that tested a current clinical practice. Their results, published in the Mayo Clinic Proceedings, found 146 studies that proved or strongly suggested that a current standard practice either had no benefit at all or was inferior to the practice it replaced. Of course, this is not to say that myriad treatments don’t indeed improve and save lives, but it’s important to ask questions and do your own research before making a decision on which treatment is the best for you.

Start by asking your doctor to explain all the treatment options open to you, including what would happen if you do nothing. Recognise that all treatments are inevitably associated with some risk of possible harm. Ask your doctor to quantify that risk beyond a purely descriptive term, such as “low risk” (what your doctor considers a small and acceptable risk may be unacceptable to you). Next, do your own research. In order to make an informed decision, you will need to gather reliable information on which to base your choice. Fully exploring the risks and benefits of treatment involves doing your own evidence-based research (using evidence from medical studies that have looked at what happens to many thousands of people with your condition). In a previous article, I shared with you some helpful guidelines for assessing medical information. Most media reports about the benefits of treatments present risk results as relative risk reductions rather than absolute risk reductions, so you will need to understand the difference. Absolute risk of a disease is your risk of developing the disease over a time period. We all have absolute risks of developing various diseases such as heart disease, cancer, stroke, etc. Relative risk is used to compare the risk in two different groups of people. For example, research has shown that smokers have a higher risk of developing heart disease compared to non-smokers. Ask your doctor to differentiate between absolute and relative risk. Check out the NNT website which provides non-biased summaries of evidence-based medicine. “NNT” stands for a statistical concept called the “Number-Needed-to-Treat” – as in “How many patients need to be treated with a drug or procedure for one patient to get the hoped-for benefit?” The core value of the NNT is its straightforward communication of the science that can help us understand the likelihood that a patient will be helped, harmed, or unaffected by a treatment. It provides a measurement of the impact of a medicine or therapy by estimating the number of patients that need to be treated in order to have an impact on one person. Because we know that not everyone is helped by a medicine or intervention — some benefit, some are harmed, and some are unaffected, the NNT tells us how many of each.

You may also want to hear about what other people with your condition have chosen to do and what their experience has been. But remember that just because something has/hasn’t worked for someone else, it doesn’t mean it will/won’t work for you. Orthopedic surgeon, Dr Nicholas DiNubile, recommends patients ask their doctors, “If this were you, or one of your immediate family members, what would you do and/or recommend?” While this may be useful, you must ultimately decide what benefits and risks are important to you. Can you tolerate the side-effects? Are you happy with the way the treatment is administered? Would you find it stressful to live with the risk of any serious side effects, even if the risk is small? What matters is whether you think that the benefits outweigh the risk of any side effects. Everyone is different. The treatment recommended for you may not be the best treatment for your particular lifestyle. Being an advocate for your own health care involves asking lots of questions, doing your own research, and making your preferences known to your doctor. By doing this, you will be better informed and in a stronger position to get the treatment that is right for you.


Related Reading
Clinicians’ Expectations of Treatments, Screening, and Test Benefit and Harm
The three questions that every patient should ask their doctor
Strategies to help patients understand risks

Mobile Doctor’s Appointments? Do They Work?

Dr. On Demand Dashboard

Dr. On Demand Dashboard

Hate the doctor’s office and don’t want to go to Urgent Care or the E.R.? There’s an app for that. Doctor On Demand is a mobile application that allows you to have a video appointment with a doctor from your own home. On their website they claim, “At Doctor On Demand we provide fast, easy and cost-effective access to some of the best doctors, psychologists, and other healthcare providers in the country. Our patients can have Video Visits with these providers on their smartphone or computers at any time of day.” Recently a friend of mine used this app for the first time because of a strange lump in her armpit, so I decided to sit in to see what it was all about and if it can actually replace an in-person visit.

Before

First thing you do is download the app, create an account, and fill out your health and insurance information. Then, you are given the option to choose a specific doctor or specific time. If you chose the specific time route, you are assigned a doctor. My friend chose a specific time and told me that it was a very easy, user-friendly process. To prepare for the appointment, you fill out all your symptoms and take pictures of your problem (if applicable) to have on hand. I asked my friend why they chose Doctor On Demand over a traditional doctor, Urgent Care, or E.R., and she said this way she won’t have to waste time stuck in a doctor’s office, could be seen quicker, and the appointment times worked better with her work schedule. However, she was hesitant because the doctor would not be able to feel or see the issue in person, which may affect the diagnosis.

During

Once your call begins, the doctor begins by reviewing your chart before coming on camera. Next, the doctor comes on camera and asks to explain the problem and the symptoms she was having. The appointment is set up like a FaceTime call. The doctor assigned to my friend was very friendly and attentive. This when those photos you took beforehand are useful because then she asked my friend to upload the photos for her to look at.

After

After the issue was thoroughly explained, the doctor was unable to diagnose what was going on without further testing. She did explain the several possibilities of what could be occurring and what tests may be needed. However, in the end the doctor did recommend that my friend go see a doctor in-person to get an accurate diagnosis.

Overall

In conclusion, my friend was reassured that it didn’t require immediate attention and that she shouldn’t worry. She also felt better and more relax about the few days it would be before she could be seen by a doctor. She and I would both recommend using Dr. On Demand, especially for the simpler alignments, such as colds, because the doctors are able to write prescriptions to your local pharmacy saving you the time wasted in a waiting room. My friend had this to say about her overall experience:

“This was a quick solution to put my mind at ease that something more serious was not going on before I was able to schedule an in-person doctor’s appointment”