Start Here: Bridging the CLL Expert and CLL Patient Voice

Chronic lymphocytic leukemia (CLL) can sometimes feel overwhelming and complicated, but what can patients and care partners do to help improve their care? With this question in mind, the Patient Empowerment Network initiated the START HERE CLL program, which aims to close the gap in the expert and patient voice to build empowerment. 

START HERE CLL Program Resources

 The program series includes the following resources:

Lisa Hatfield and Dr. Danielle Brander

Patient-Expert Q&A Webinar Topics and Key Takeaways

In the Patient-Expert Q&A webinars, CLL experts Dr. Ryan Jacobs from Levine Cancer Institute, and Dr. Danielle Brander from Duke Cancer Institute shared their expert knowledge to help patients and care partners fortify their knowledge and confidence. The webinars provided some in-depth discussion along with key takeaways derived from questions submitted by patients. Some of the discussion covered:

Among some key points from the webinars, Lisa and Dr. Jacobs discussed the importance of genetic markers. Dr. Jacobs recommended CLL patients ask their doctor about their prognostic markers. “The one that is still potentially affecting outcomes, even with our novel treatments, are chromosome 17 aberrations, which stately are rare in the initial diagnostic setting, that or a TP53.”

The watch-and-wait phase of CLL, also called active surveillance, is a common term heard by CLL patients. However, there are actually two types of CLL. “While some CLL patients experience very gradual disease progression and are actively monitored during a watch-and-wait phase, other patients may experience a more expedited CLL progression and will need more frequent treatment.”

Treatment advancements for CLL have been moving forward over recent years. Dr. Brander shared her perspective about the advancements. “So over the last decade or even the last five years, for patients diagnosed with CLL, there’s been a very encouraging and marked change in the available treatments…not that many years ago we generally only had chemotherapy or chemotherapy combined with these antibody targeted treatments that we call immunotherapy sometimes. But in the last 5 to 10 years we’ve seen quite a remarkable change in treatments that target, meaning often they go after pathways or ways that the CLL cells have learned to grow or have learned to not die the way that normal cells should, die after certain time points.” 

Vaccines for those with CLL have gathered more visibility in recent years with COVID-19. Dr. Jacobs addressed some questions about vaccination and shared, “I in general am recommending, as does the CDC, to get boosted every six months for patients with any level of immune suppression and having CLL qualifies you as that. And then I recommend all of the general vaccines that come with age, like, for example, the Shingrix vaccine for shingles is now safe to give to CLL patients because it’s a conjugate vaccine, it’s not a live virus vaccine. So we’re lucky now with just standard vaccines in the U.S., there are no live virus vaccines that the CLL patient has to worry about anymore, so I definitely encourage shingles, pneumonia vaccines, boosting for COVID. We’ll see if we get an RSV vaccine, that sounds like it’s on the horizon. Flu, of course.”

Worries about CLL progression are felt by many patients, and there are some ways to stay alert for warning signs. Expert Dr. Jacobs explained signs of CLL progression including new or worsened drenching night sweats, significant changes in a patient’s ability to function, and major changes in lymph nodes over a short period. Dr. Jacobs also shared some research updates for treatments that have shown success against progression to Richter’s transformation. “…I’ve been having some recent success using CAR T in those patients, and also now have a, I was thankfully getting it sort of off-label approval to do that, but now I actually have a clinical trial investigating axicabtagene ciloleucel (Yescarta) in those patients.

Some CLL patients wonder about whether they can take a break from treatment. Dr. Brander addressed this question about BTK inhibitors. “…BTK inhibitors are given continuously, meaning, at least so far, the standard way we recommend of those treatments is that they’re taken every day, either once or twice a day, depending on which BTK inhibitor, and they’re taken every day. Unless patients run into progression, meaning the CLL learns to grow through its resistance or patients run into side effects that despite maybe team’s recommendation of changing the dose or holding the medications, that it’s just the medication is just not tolerate.”

Many CLL patients also wonder about the impact of exercise on their treatment response and their duration of treatment response. Dr. Brander explained about the impact of exercise. “I think certainly trials or studies really need to be continuing to look at this, because I think there likely are things that we can be more specific to patients about. There are studies looking at physical fitness and exercise regimens not necessarily specific to CLL, although there are studies being done in that space, but to other cancers showing that physical activity and exercise can help even for patients not on treatment maintain control of their cancer. So general daily activity and exercise are important in studies that look at how do you tailor that to an individual I think are important too.

Whether patient fatigue is originating from CLL or from symptoms of old age can sometimes be difficult to determine. Dr. Jacobs shared some insight about fatigue. “Fatigue, I’m not as confident when that’s the only issue that a patient’s having. I try to differentiate between fatigue from other causes and old age, and specifically to CLL. They try to put it as a metric and say, if you’re having to spend half the day or more just lying around and you’re not able to do your normal activities of daily living, like that’s a severe level of fatigue and treatment should be considered. I’m looking for somewhat of a precipitous decline, not necessarily just kind of the gradual fatigue that you might more relate to aging.

Some program participants provided valuable testimonials and insights on what they learned from the START HERE CLL Patient-Expert Q&A webinars:

Testimonials:

  • I love PEN webinars because I feel I have a direct connection with the best experts. I have many questions for my team after this program, thank you.”
  • “This program was stellar. I learned a lot that I have to address with my doctor.”
  • “I have a greater comfort level with promising treatment options.”
  • “I was most interested in learning about treatment options for relapsed patients and Dr. Jacobs provided great information. THANK YOU!”
  • “This was very helpful as I consider how to support my sister who has been diagnosed with CLL.”

Learnings:

  • “What BTK and BCL-2 inhibitors are…How Fish looks for DNA for Leukemia cells. And how exercise can help any cancer patient. Thanks for the program!”
  • “Even though I am Watch & Wait, I appreciated the information and explanation of the latest treatments.” 
  • “Fantastic program. Learned about many reasons docs decide not to treat.”
  • “I learned about some potential treatment options should I relapse.”

Many other questions were raised during the CLL Patient-Expert Q&A webinars. We hope you can use these valuable CLL resources to build your knowledge and confidence toward becoming a more empowered patient or care partner.

Top Two Reasons Why CLL Patients Should Participate in a Clinical Trial

Why exactly should a chronic lymphocytic leukemia (CLL) patient think about joining a clinical trial? In In the “Why Should CLL Patients Consider a Clinical Trial?” program, expert Dr. Adam Kittai from The Ohio State University Comprehensive Cancer Center – The James explains the motivation of clinical trials and the benefits CLL patients may receive from clinical trials. 

1. Improve Future CLL Treatments

Clinical trials examine the benefits of a specific treatment for a specific cancer and cancer stage. If you or your loved one participates in a clinical trial, there can be a double benefit to participation. The data gathered from clinical trials assists researchers in improving future CLL treatments for the patient who participates in addition to other CLL patients. Clinical trials can often have underrepresentation by BlPOC patient groups, and it is important for these groups to be represented in trials in order to develop the most refined treatments for all patient races, ethnicities, and genders.

2. Gain Access to Unavailable Therapies

In addition to improved treatments, clinical trial participation has other patient benefits as well. If you or a loved one participates in a clinical trial, the patient gains access to treatments or therapies that may not be accessible in another way. Clinical trials sometimes use different combinations of treatments that haven’t been used previously for a specific stage or type of cancer. Or clinical trials may offer access to a cutting-edge therapy that may ultimately be both more effective while also causing fewer side effects, which could result in a major win-win for patients.

By participating in CLL clinical trials, patients can help improve future CLL treatments for themselves as well as for others. If you have additional questions about clinical trials, ask your doctor or other healthcare provider. If they don’t have information about trials for your specific cancer and stage, they can check with specialists who would more familiarity. You can also find a database of clinical trials at clinicaltrials.gov.

Three Main Treatment Approaches for CLL Patients

What are the main treatment approaches for Chronic Lymphocytic Leukemia (CLL) patients? In the “CLL Treatment Approaches: What Are the Types?” program, expert Dr. Catherine Coombs from The UNC Lineberger Comprehensive Cancer Center outlines CLL treatment options and patients they may work best for.

1. BTK Inhibitor Targeted Therapy

The CLL treatment approach of BTK inhibitors work against the function of Bruton’s tyrosine kinase protein. Bruton’s tyrosine kinase – or BTK – is involved in signaling processes in both cancerous and healthy B cells, and BTK inhibitors exert against B cells to prevent cancer growth. Acalabrutinib (Calquence) and ibrutinib (Imbruvica) are two BTK inhibitors currently approved for CLL treatment. In general, patients are kept on BTK inhibitors if they are working well and with minimal side effects, as BTK inhibitors generally work extremely well against controlling CLL over time. Due to their success over time, BTK inhibitors are an excellent treatment option for more elderly patients. 

2. BCL-2 Inhibitor Targeted Therapy

Another CLL treatment approach is BCL-2 inhibitors, which work against the pathway that lies within CLL cells. The process of CLL cell death and BCL-2 inhibitors create is called apoptosis. The drug that falls under the category of BCL-2 inhibitors for CLL treatment is venetoclax (Venclexta). An anti-CD20 drug – such as obinutuzumab (Gazyva) – is usually combined with venetoclax to work as a team to kill CLL cells. BCL-2 inhibitors are designed as a shorter term therapy to get patients to remission status, and then they can go off the treatment for regular monitoring after they achieve remission.

3. Cytotoxic Chemotherapy

Though targeted therapies comprise the majority of CLL treatment for patients, cytotoxic chemotherapy is used for some patients. Although cytotoxic chemotherapy is effective, this therapy also has the drawbacks of being less effective than targeted therapies and can cause long-term toxicities in patients. 

CLL patients have different treatment options depending on age, lifestyle, and other treatment factors. If you want to learn more about CLL care and treatments, check out our CLL information.

How Can CLL Patients Get the Best Care No Matter Geographic Location?

For chronic lymphocytic leukemia (CLL) patients, treatment access has been limited for some Black, Indigenous, and People of Color (BIPOC) patients, non-native English speakers, and those who live in rural areas due to lack of access to technology devices, stable Internet access, and other socioeconomic factors. And though more needs to be done to improve understanding of racial variances in CLL biology and other outcome factors, the COVID-19 pandemic has actually brought about some unexpected changes in access to CLL treatment.

Patient Empowerment Network is working to help improve health outcomes for underserved CLL patients through the Best CLL Care No Matter Where You Live program. Let’s take a look at key learnings from a powerful self-advocacy vignette to advice from an expert panel with the goal of helping CLL patients on their health journeys to gain confidence around treatment decisions no matter geographic location.

CLL Patient and Care Partner Advice

Cancer patients and care partners may encounter some obstacles to patient care and access to clinical trials. But a variety of technology, language, patient monitoring, and support resources have emerged to aid in patient care including:

  •  Telemedicine options including televisits via smartphones, tablets, and computers
  •  Patient portals for requesting prescription refills, reading test results, and scheduling appointments for cancer care
  • Translation services via an in-person interpreter, remote interpreter, and multi-language translation of information for cancer patients
  • Remote monitoring devices for blood pressure, heart monitoring, sleep tracking, and more
  • Online patient support resources including cancer treatment information and online patient support groups

According to Dr. Kathy Kim from UC Davis School of Medicine, “..so there’s been a huge upsurge in the number of hospitals and clinics and practices that have been able to implement telehealth with their patients. But there are other tools that again, have been in development that are now starting to take off under the last year, and those are remote patient monitoring devices, these are either specific medical devices, like blood pressure machines, glucose meters, some heart monitors, sleep monitors…devices that check your oxygen saturation. So, there are many medical devices that are for use in the home, that are either covered by insurance or people can buy them at the drugstore, and what has really come about this year is the ability to connect the data from the device you have in your home to your provider, so that’s been in place, but we really haven’t implemented it very many places, and now lots of places are allowing that connection to happen. So, the patient can use the device in their home and get it connected to the and have it sent to the hospital or to their doctor, so their doctor can be watching the data and also monitoring them, so that’s one really wonderful piece of progress that we’ve had in the past year.” And additional tools to help improve patient care will continue in the future.

CLL Patient Self-Advocacy Experience

Sharing the patient perspective, CLL patient William Marks discusses some of the details of his patient journey. From his diagnosis to getting connected to Dr. Awan via televisits during the COVID-19 pandemic, William shares the value of getting a second opinion, lifestyle improvements he made, and things he found helpful in taking charge to get the best CLL care possible.

William took charge of his care when he didn’t feel comfortable with his first opinion, “I had an oncologist, they wanted to do a treatment on me that I really didn’t agree with, and I found a doctor who first started out saying, “We don’t want to do this right now, we just want to kind of see what happens” and then to me, it turned out successful.”

And William took a proactive approach to his care, “I started from the beginning, I started doing everything. I started reading everything I could, I started trying to research everything, I changed my eating habits, I lost weight, I did everything I could personally, but I knew that the CLL that I had, I could not conquer by myself and alone. And so that’s when I knew, you can do everything you can, you can take all the herbs and supplements and everything you can, but then CLL is something that you really like you said, you need someone who specializes in it to know…but I’m really doing real well after six years, and I do believe that Dr. Awan saved my life.”

If you or a loved one is a CLL patient, tune in to the webinar replay to learn helpful advice for improving access to the best and latest CLL treatments no matter location or circumstances, receiving free CLL remote consultations, taking an active role in your care, working as a team with your CLL specialist, and supporting the CLL patient journey.


Resources

Increasing Treatment Access for Every CLL Patient No Matter Location

How Can CLL Patients Avoid Pandemic Challenges Without Compromising Quality of Care?

What Multi-Language Technology Innovations Are Available for Cancer Patients and Families?

What Key Questions Should CLL Patients Ask About Digital Tools Born Out of COVID?

How Can CLL Patients Mitigate Distance and Technology Barriers to Care?

Sources

Stephanie Williams, MD , Amy A. Ayers, MPH , Michelle A. T. Hildebrandt, PhD , Lorna H. McNeill, PhD , Christopher R. Flowers, MD, MS (2020). Strategies for Overcoming Disparities for Patients With Hematologic Malignancies and for Improving Enrollment on Clinical Trials. Oncology. Accessed May 26, 2021. https://www.cancernetwork.com/view/strategies-for-overcoming-disparities-for-patients-with-hematologic-malignancies-and-for

Christopher R. Flowers, MD, MS and  Barbara Pro, MD (2013). Racial differences in chronic lymphocytic leukemia: Digging deeper. Cancer. Accessed May 26, 2021. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3834561/

Patient Profile: Liz Sarris

Patient Profile

Liz Sarris

Liz Sarris knows the world of healthcare pretty well. Not only has she had a 40-year career as a nurse, but she’s also had a host of chronic illnesses, which means lots and lots of doctor appointments. As if that weren’t enough, Liz has also been diagnosed with cancer three times – with three different and unrelated cancers! “I’m being watched closely from many angles,” she says. “But the great news is I live to tell the story.”

Her cancer story began in 1988. Her primary care doctor found some unexplained blood in her urine and, unable to dismiss it, referred Liz to a urologist. A scope of her bladder revealed a tumor that was about the size of a pea. Fortunately, it was non-invasive, had not invaded the bladder lining, and was removed. No treatment was required, but she did have to be monitored regularly. For the first two years she was checked every three months, then every six months for the next several years. After that she graduated to annual checkups that continue to this day.

Fast forward to 2014 when she was diagnosed with chronic lymphocytic leukemia (CLL). This time, Liz was seeing an endocrinologist for a thyroid issue when the doctor noticed some abnormalities in her blood work. Further testing led to her CLL diagnosis, which, so far, hasn’t required any medications or treatments other than quarterly check ins. “It is a watchful waiting situation,” she explains.

Then in 2017 things took a turn. Liz’s gastroenterologist, who she sees regularly for two chronic gastrointestinal issues, said that there was a spot on her scans that needed to be checked out. It was a spot they had been watching, but now it was starting to change. The spot turned out to be a neuroendocrine tumor of her pancreas. It was a slow growing tumor and not aggressive, but it was malignant and had to be removed, and there was a chance that it was a lot worse than the doctor thought it was. It meant major surgery that was not at all routine, and because her tumor was in the middle of her pancreas, it was possible that she might lose part of her pancreas and her spleen. Liz wanted the best possible outcome from the surgery, which meant keeping as much of her pancreas as possible, so she started to search for a surgeon. “I wanted to see the right people who were specific to this type of cancer and who do neuroendocrine tumors every day,” she says. “If he’s going to poke around my pancreas, I want to know he’s doing 10, 12, 15 of these surgeries a month.”

First, Liz narrowed her search geographically. She lives in an area that is relatively close to several high-quality medical facilities, and she knew that she didn’t want to be too far away from her family and support system after such a big surgery. Then she started asking questions and doing research. “Because I had engaged myself with good local physicians, I reached out to them for referrals,” she says. She asked her doctors who they would send their wives to and who they themselves would go to. Then she started calling surgeons and made appointments to interview three of them. When she had it narrowed to the surgeon she felt best about, she visited him a second time. “I don’t know if it’s the nurse in me or just who I am,” says Liz about her research process. She says that the doctor she chose made her feel confident, and his approach was more hopeful because he was willing to perform the surgery using a rare technique that meant he would remove the tumor from the center and then reconnect the two sides of her pancreas. Her doctor was upfront with her about all the possible risks and made sure she knew that his plan could change if the surgery revealed a different situation than they were expecting. “Do whatever you have to do to give me the best chance at a healthy life,” she told him and added that she hired him to do the job he would do for his mother, his sister, or his daughter and that she didn’t want to see him again in five years.

Her eight-hour surgery was a success. The tumor was removed, and her pancreas was put back together in what Liz describes as a “creative way.” After her surgery she didn’t require any treatment other than regular monitoring, and so far, all her scans have been good. She credits her successful outcomes in part to having a supportive family, good insurance, and good doctors, but she didn’t have good doctors by accident. She’s very proactive in her own healthcare. “I had the recipe for a good situation, but that doesn’t mean I didn’t have to do the research,” she says.

Her background as a nurse helped her know what questions to ask, but she wants others to know they can ask the same questions and can be just as informed. “You can navigate your care more than you think you can,” she says. “You really have to utilize your resources.” Liz says resources like the Patient Empowerment Network, where patients have access to free online tools such as a checklist of questions to ask the doctor, are great for cancer patients. “There needs to be more empowering,” she says. “Much of what I’ve done my entire career is try to empower patients.” She says that being empowered means being educated, identifying your expectations, and asking questions. “We are willing to ask questions of our auto mechanics about our car’s maintenance and repair, but not of our doctors about our own bodies,” she says.

These days Liz is adjusting her expectations for her own life. In March, Covid-19 interrupted the career she’s been so passionate about when her oncologist told her it wasn’t safe for her to continue to work during the pandemic. “This is not how I anticipated retiring,” she says. With her unique perspective as experienced patient and medical professional, she has a lot of knowledge to share, so now Liz is exploring how she can continue to help other patients learn more about how to navigate the healthcare system and take charge of their own care plans. She’s empowered to empower others.


Read more patient stories here.

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:

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.

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

beautyHave you ever had the experience of leaving the doctor’s office wishing you had remembered to ask a certain question? Or have you left it until the very end to tell your doctor about the real reason for your visit? These so-called “doorknob” questions – bringing up an important concern just as you are leaving the office – can mean your doctor won’t have time to adequately address your concerns. When the average time it takes for a doctor’s visit is fifteen minutes, it’s easy to feel rushed and forget what you wanted to say, or to leave an appointment unsure of the information you have heard. But with a little advance preparation you can learn how to make the most of those fifteen minutes. Follow these fifteen tips to become a more empowered and engaged partner in your own health – and the health of those you care for.

1. When you call to make your appointment, explain clearly why you need to see the doctor. Let the receptionist know how much time you will need to schedule for the visit. If you have any special needs, such as wheelchair access or interpretive needs, let the office know in advance.

2. Be sure to that where you make your appointment accepts your insurance. You can call or go online to your insurance website to see a directory of in-network providers.

3. If this is your first visit to a new physician, gather together any past medical records and family medical history to take along with you.  If you’re seeing other doctors and have information they’ve provided, bring this along too.

4. Write down a list of your symptoms before the visit. It’s a good idea to keep a diary so you can chart your symptoms over time. Include details of the type of symptoms you are experiencing, when these symptoms began, and what makes them better or worse.

Use this common medical mnemonic to guide you.

(O)-P-Q-R-S-T

  • Pain (“Where does it hurt?”)
  • Quality (“What does it feel like?”)
  • Radiation (“Does it move anywhere?”)
  • Scale (“How bad is it? How much does it affect you?”)
  • Timing (“When did it start? How long does it last? Does it come and go? Is it gradual or sudden in onset? What makes it better or worse?”)
  • Other (“Any other symptoms?”)

5. Set the agenda at the start of your visit. Did you know that a patient has an average of 23 seconds to state their concerns before a physician interrupts? According to an article published in The Journal of the American Medical Association, only 28% of doctors know their patient’s full spectrum of concerns before they begin to focus on one particular concern, and once the conversation is focused, the likelihood of returning to other concerns is only 8%. Doctors have a limited amount of time for office visits. In order to use their time wisely they usually set the agenda and control the visit as much as possible. To avoid this happening to you, prepare in advance the top two or three concerns you want to raise with your doctor. Are you looking for a diagnosis? Do you need a new treatment plan or a modification of an existing plan? Are you looking for help with feelings of fatigue or depression? Don’t forget to describe your emotional state and any personal circumstances which may influence your physical health. Write down your main concerns so you are ready to verbalize them clearly at the beginning of  your visit.

6. If you use a self-tracking device, like a Fitbit, download your data and summarize the findings beforehand.

7. Bring a list of all medications you are currently taking, including over-the-counter medications, vitamins, herbs, or supplements. If you have a smart phone or tablet, it’s useful to take pictures of your medication and supplement labels to show the doctor.

8. During your visit, tell your doctor you would like to take notes. If you would prefer to record your notes via your smartphone, ask your doctor if it is ok to do so.

9. Medical care is a conversation. So to have influence in that conversation you have to speak up. If you don’t want the treatment your doctor recommends (or you’re not sure), it’s reasonable to ask if there are other treatment options available. Never be embarrassed to tell your doctor if you don’t understand something she has 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

10. If you find it difficult to speak up for yourself, or you are facing a potentially challenging diagnosis, bring a friend or family member along for support. This person can also take notes and help you remember what was discussed later.

11. Always be honest with your doctor. You may not like to admit how much you drink, or smoke, or if you have stopped taking your medication because of expense or side effects, but your doctor needs to know about these and other lifestyle matters to ensure you are receiving optimum care.

12. Ask you doctor to explain any test results to you, Request a copy of the results for your own files.

13. Before you leave, be sure you understand what needs to happen next. Do you need any further diagnostic tests? When will you get the results? If you have just received a diagnosis, what are your treatment options? If you have questions or concerns later how should you contact your doctor? You can also ask if your doctor recommends any specific reading materials or websites about your condition.

14. If you have been given a prescription for a new medication, do you understand how and when the medication should be taken? Are there any side-effects, for example drowsiness, you should watch for? How will you know if the medication is working? What happens if you miss a dose?

15. After your visit, review and file your notes along with any test results or other documentation and billing you received. Schedule any follow up tests or appointments right away.

Your relationship with your doctor is one of the most important you have. Advance preparation will help you use your own time and your doctor’s time more efficiently and effectively. When people take an active role in their care, research shows they are more satisfied and do better in how well treatments work. Preparing for your doctor’s visit is an important step toward becoming a partner in your own health care and a better advocate for your health and well-being.