ASCO 2018

It’s almost time for ASCO 2018, the biggest event in cancer medicine. The American Society of Clinical Oncology’s annual meeting brings together more than 32,000 oncology professionals from around the world to discuss state-of-the-art treatment modalities, new therapies, and ongoing controversies in the field. View the latest ground-breaking science that will be featured at this year’s Annual Meeting here. This year’s meeting will take place from June 1 – June 5, in Chicago, Illinois.

The meeting offers informative educational and scientific sessions that highlight the latest in cancer care treatments. Educational sessions feature world-renowned faculty discussing state-of-the-art treatment modalities, new therapies, and ongoing controversies in the field. Science sessions present the latest ground-breaking research in oral and poster format. You can check out the 2018 Program here.

Follow Along

During the conference you can follow along on Twitter with the official meeting hashtag #ASCO18 or by following @ASCO to get the latest meeting news, research, and announcements.

We will also be tweeting the patients’ perspective during #ASCO18. Follow us on Twitter to experience it through the eyes of patients.

For expert perspectives on controversial topics as well as highlights from education and scientific sessions, check out the official news source, ASCO Daily News.

Join the Conversation

In honor of  the 2018 ASCO theme, Delivering Discoveries: Expanding the Reach of Precision Medicine, we will be hosting a special #patientchat on Friday, June 1st about what precision medicine means for the patient. Please join us on Twitter at 10am PT | 1pm ET.

If you are attending the conference, consider attending the #ASCO18 Tweetup. The official ASCO Tweetup is an informal gathering for attendees interested in the intersection of oncology and social media to meet and mingle. Join us on June 2, 5:45-6:45 PM in the Plate Room food court (North Hall Level 2.5).

How To Reduce Cancer-Causing Toxins in Your Home

Thanks to advancements in medicine, infectious diseases are no longer the mass killers they once were. Unfortunately, cancer has stepped up to the plate with it being estimated that as many as 1,735,350 new cases of the illness will be diagnosed in the USA this year alone. Cancer in younger patients is becoming increasingly prevalent, forcing us to take a closer look at the link between environmental and dietary factors that can increase the cancer risk.

While quality medical care is imperative when it comes to fighting diseases like cancer, certain preventative measures can help avert several medical conditions before they begin. The first place that such preventative measures must be implemented is in our own homes that often conceal a number of cancer-causing toxins. By following these simple guidelines you can significantly limit your exposure to harmful toxins within your home.

Ditch your harmful cleaning products  

Most modern-day homes are flooded with toxic cleaning products that not only destroy our immune systems by overwhelming our environments with disinfectants, but expose our bodies to cancer-causing toxins as well. While bleach-based products are the most successful at killing germs, their fumes are especially dangerous to us while ammonia offers greater health risks than cleaning potential.

Air fresheners are another common household product that contains a substantial amount of potentially harmful ingredients such as Acetaldehyde and Benzaldehyde, both of which are known carcinogens. Although there are a number of organic cleaning products available on the market soap and water always remains a good choice. You can also make use of natural cleaning agents such as vinegar, baking soda and lemon juice to keep your house clean without being detrimental to your health.

Use glass

Polystyrene and plastic are both big culprits when it comes to containing harmful chemicals. Syrene, which is used in manufacturing polystyrene, is a known carcinogen that can leak into your coffee, soup and other hot foods.  Avoid using polystyrene containers to hold any hot food and liquids, opting for recycled cardboard and paper instead. When it comes to plastic, Bisphenol (also known as BPA) is often found in inflexible toys, storage and drinking containers (including baby bottles) and the lining of certain canned products. BPA has been linked to both developmental as well as cancer risks and products containing it should best be avoided.

According to Dr Sumi Dina, a professor at Oakland University School of Health Sciences, a seemingly healthier alternative to BPA known as BPS, has exhibited similar behavior to BPA in terms of multiplying cancer cells, rendering it useless as a substitute.  To avoid possible exposure, buy toys that are labeled as BPA free and make use of glass when it comes to drinking and storing food products.

While we want to rid our homes of potentially dangerous germs and bacteria it is important to note that we are harming our immune systems by aiming to live in a sterile environment. We need to be exposed to germs to a certain extent to keep our immune responses in an optimal working condition. It really is only food prep facilities and medical institutions such as hospitals that require sterile environments. By removing the greatest risks from our homes and allowing the predominantly innocuous germs to roam fairly freely, we will not only reduce the risk of illness but give our bodies the best possible chance to fight the diseases too.


Editor’s Note: For information about lead in homes, how to identify it, and different methods of dealing with it, please take a look at the article: Lead in Your Home: How to Safely Identify Issues and Avoid Exposure.

Healthy Habits to Help Addiction Recovery

Addiction is a chronic condition. A chronic condition is one that is persistent and pervasive — it is hard to shake and can take over one’s life. Addiction cannot be completely eliminated, but it can be well-managed to a point where substance abuse can have less of an impact. This is what recovery is all about — stifling addiction with healthy living and moving on with an understanding that it may rear its head in the future. Enabling this successful recovery is not easy. For many, it requires a life change with a focus on overall health.

Attaining a well-balanced, healthy life with a well-managed addiction involves adopting healthy habits. There are many healthy choices available for most people such as incorporating more activity, becoming mindful, adding spirituality, eating a healthy diet, and ensuring positivity in one’s social circles. Here are some ways to address each of these for successful recovery.

Exercise to Battle Addiction

Studies show that exercise helps people step away from addictions. Working out decreases cravings for substances. When people work out, they can tap feel-good brain chemicals such as dopamine, norepinephrine, and serotonin. Drugs and alcohol also release or increase production of these chemicals. Exercise is a proven way of replacing getting high with a similar level of euphoria. In addition, since exercise can help lower stress, it may play a role in ultimately reducing cravings for drugs and alcohol.

Mindfulness Resets Mental Wellness

Similarly, mindfulness exercises such as mediation have positive impacts on recovery. Mindfulness is the process of living in the moment and attaining self-knowledge through introspection and observation. It is often done in quiet meditation. Meditation helps calm emotions and reduces stress, anxiety, and depression, each of which can contribute to drinking or doing drugs. To many, mindfulness is like the opposite of substance use. Where someone may turn to drinking or using drugs as a coping mechanism for stress, mindfulness involves staring straight into problems. Addiction is escape, but mindfulness is engagement.

Incorporating mindfulness into recovery is simple. Slow down and devote a small portion of your day to quiet reflection and assessment of your life. Soon, you will identify areas where you need improvement. Remind yourself of your progress to support your mental health through positivity.

Diet Improves Physical and Mental Health

A healthy diet supports a healthy, well-rounded life. Nutrition improves mood and helps in all areas of life. When you eat better, you feel better — physically and emotionally. Physical strength bolsters your ability to get through stress and difficulty and avoid injuries, which can lead to abusing painkillers and drinking. Healthy diets also support regular sleep, which, in turn, leads to better physical and mental health. Here are some considerations in adopting a healthy diet:

  • Eat more whole foods. Processed convenience foods are full of added salt and sugar and are deficient in nutrients.
  • Enjoy variety. Food is a source of pleasure — and you don’t have to overeat or fill your meals with unhealthy choices to experience culinary joy. Try different vegetables and unusual spices to broaden your diet.
  • Add protein, which helps addicts repair physical damage caused by substance abuse.
  • Eat when hungry. Some addicts are used to avoiding food and may fear gaining weight.

Surrounding Yourself with Positivity

Friends provide recovery support, and socializing has been shown to increase overall mental wellness. Positivity is key, however. Relapse is possible if someone in recovery associates with those who either use substances or encourage their use. Supportive socialization, however,  can help develop increased self-worth.

Healthy habits pave a walkway for a sustained positive life, free of substances. However, it’s also important to be ever mindful of their risks during addiction recovery.


Editor’s Note: Making a financial plan and sticking to it can help you get back on your feet. Check out this guide on How to Rebuild Your Finances After Rehab.

 

Spotlight On: National Cancer Research Month

Cancer research. It has taught us about risk factors, environmental factors, health screenings, causes, treatment options, metastasis, recurrence, rates of survival, and even how healthy cells might be used to wipe out the cancerous cells. Cancer research is broad and reaches far beyond the study of the infected cells. The research helps us to understand cancer and the many aspects of it that will affect the estimated 1,735,350 people who will be diagnosed with cancer in 2018, not to mention the millions already living with the disease. The years upon years of research devoted to cancer has led to valuable insight and life-saving measures. To emphasize the importance of the contributions of cancer research, the month of May was established as National Cancer Research Month and is led by the American Association for Cancer Research (AACR). More information about National Cancer research month can be found here and here.

When it comes to cancer, the areas of research are vast. Many people may not know that there is more to cancer research than looking for treatments or a cure. To understand cancer, researchers spend years discovering how the disease forms, what environmental factors play a role, and what treatments might stop it. The types of research range from basic cancer research that studies the actual cancer cells to survivorship research that studies how cancer affects people after treatment. Database and population-based research are also critical to learning more about cancer. At cancer.ca the Canadian Cancer Society gives a thorough description of the various kinds of cancer research and the value they have which can be found here.

Once considered a hopeless disease, cancer plagued civilizations dating as far back as ancient Egypt, which you can read about here and here. However, it was in the early 1900s that worldwide cancer research began to offer a more clear understanding of the disease. Groups, like the AACR formed in 1910 and the Canadian Cancer Society formed in the 1930s, brought doctors and scientists together with the mission to search for ways to eradicate the disease and help improve the quality of life for those living with cancer. It was 1971 when President Nixon declared a war on cancer. The disease had become the second leading cause of death by 1970 and Nixon’s signing of the National Cancer Act of 1971 aimed to amplify the national efforts against cancer. The act established the National Cancer Institute (NCI) in its current form. Formerly created by the National Cancer Act of 1937 as the federal government’s agency for cancer research, the NCI was strengthened in 1971 with broader authority given to the director and more emphasis placed on research that included public and private partnerships, funding for additional cancer research facilities, and the creation of an international research data base. Today, the NCI is made up of about 3,500 people and 30 divisions, offices and centers all working to advance cancer research. The NCI, which calls itself the leader in the nation’s cancer research, reports that in the last few decades there have been declines in rates of new cancer and overall cancer deaths and that the number of cancer survivors in the United States more than doubled between 1992 and 2016 from 7 million to more than 15 million and the number is expected to rise to more than 26 million by 2040. More information about the NCI and it’s history can be found here and here and here.

For those affected by cancer, the research can be critical and today it is more accessible than ever. Research groups and advocacy organizations are available to patients and caregivers all day, every day through the internet. Data can be found, reviewed and discussed all from the comfort of your own home, favorite coffee shop, or wherever you have access to wifi thanks to programs such as the Patient Empowerment Network (PEN) Empowered Patient Chats , Patient Cafe , and Facebook groups. Not only are the patient resources increasing in number, they are increasing in value. “Online communities may be virtual, but they are no less real in terms of support and influence,” writes Marie Ennis-O’Connor in her September 2017 post for PEN’s Patients Helping Patients Blog. Ennis-O’Connor’s post, 12 Keys to Finding, Growing, and Nurturing Your Online Community, emphasizes the value of online communities to cancer patients when it comes to research, support, or any number of topics critical to ensure that patients stay informed, supported, and empowered.

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.

Patient and Advocate Profile: Hannah and Carrie Ostrea

Before she was a year old, Hannah Ostrea was diagnosed with a rare genetic metabolic disorder, Neuronopathic Gaucher’s Disease type 2 or type 3. Hannah’s mom, Carrie, says the doctors told her to take Hannah home and to love her, but that she wouldn’t make it past her first birthday. “We became parents on a mission,” says Carrie who immediately began researching Gaucher’s and related diseases. Soon she began contacting researchers and sending samples of Hanna’s cells to them in the United States, Canada and Israel in hope that someone might find some way to help Hannah. Carries learn that very little was being done to understand the devastating effects of Gaucher’s and that the researchers who were dedicated to studying the disease were remarkably under-funded. Carrie also learned that there are a lot of people and a lot of children with rare diseases, but that there are not a lot of answers and not a lot of funding for any of them. She also knew, first hand, that there weren’t a lot of resources available to families with children with rare diseases. Care saw a need and she started taking the steps to fill it.

Her first step was creating the Little Miss Hannah Foundation (LMHF), a non disease-specific, Las Vegas-based, non-profit organization for children diagnosed with rare diseases, children with undiagnosed medical complexities, and children in hospice or palliative care. “All these diseases, they all suck. It doesn’t matter what the disease is.” says Carrie. LMHF provides resources for local children and their families and they also emphasize the importance of supporting the other children in the family. “We want the siblings to know they are important too,” says Carrie who adds that Hannah’s illness greatly impacted the lives of her two other children. “There should always be resources for a family like ours,” says Carrie who describes her experience as the parent of a child with a rare disease as isolating because of the lack of awareness, understanding and resources. The medical community doesn’t have answers and the insurance companies won’t always cover expenses because they don’t recognize or have never heard of the diseases. Through LMHF, Carrie is committed to providing families with financial assistance and the tools and support they need. It is LMHF’s mission to empower patients and their families and it is Carrie’s passion.

In addition to running LMHF, Carrie spent five years working with Global Genes, a rare disease patient advocacy group, and she is now using her business and marketing background as a consultant for organizations like LMHF. She says there are over 7,000 rare diseases and half of those have no support group. The ones that do are often started by patients or parents of patients, like Carrie, that are just trying to save a life. Often times they have little to no knowledge or experience about how to run an organization. “I educate them on where they need to go,” says Carrie who calls herself the big sister of rare disease groups. She mainly advises the groups on the business end of their organizations. As is true for many advocacy groups, funding and awareness are the greatest needs for rare disease organizations and Carrie says social media has helped tremendously. She says she has noticed a strengthening in patient groups and advocacy in the past five years. “Social media is a godsend to rare disease. It has given advocates a platform,” she says. “It just takes one person who is willing to put themselves out there to start a chain.”

Carrie continues to take steps to fill the need she saw when Hannah was diagnosed. She says there is a lot more work to be done, but that she will continue to share her knowledge to help others in whatever way she can. “We are very pay-it-forward in the rare disease community,” says Carrie. “There’s no time not to be.”

Hannah was three when she died. She spent the last seven weeks of her life at home surrounded by her family and in hospice care. She died in Carrie’s arms. The Little Miss Hannah Foundation is her legacy and so much more. “It’s our way of still parenting her,” says Carrie. “We just do it a little differently.”

To learn more about Hannah’s story and the Little Miss Hannah Foundation visit littlemisshannah.org.

Introducing Our New Facebook Community: Empowered Patient Chat

We are excited to announce that our new Facebook group is now live, and waiting for you to join! This new online community builds on the success of our Empowered Patient Chat (#patientchat) tweetchat and aims to extend the discussion beyond Twitter and engage a larger population of patients and caregivers on Facebook.

Living with a disease or other chronic condition is challenging for patients, their families and friends. The Empowered #patientchat strives to engage and empower patients and caregivers by connecting them with each other, sharing resources and inspiration across conditions, and exploring important topics of interest to those in healthcare who want to elevate the patient voice in all healthcare matters. The community is guided by a belief in keeping the patient perspective at the forefront of all healthcare interactions, the strength of peer support, and the power of shared decision making in healthcare. 

Empowered Patient Chat (#patientchat) is a community of patients, caregivers, and healthcare professionals, interested in achieving their best health possible by discussing topics of interest in healthcare from a patient’s perspective. 

Topics of interest have included:

  • Including Patients and Care Partners: Let’s Talk Healthcare Conferences
  • Overcoming Disparity in Clinical Trials
  • Are We Missing the Mark with Patient Involvement
  • Understanding Medical Research
  • How Does Technology Benefit Patients
  • How to Include Patients in Design
  • What to Do When No One Will Listen
  • Caring for the Whole Person
  • Self-Care Goals
  • Managing Stress of Being a Patient
  • and more…

Join our group today

Patient-Centered Research: Is That a Thing?

Medical care is based on research. That was true in the time of Hippocrates, and it’s true in our 21st century lives. The scientific questioning that leads people to start experimenting and investigating something is as old as human intelligence – we’re a curious species, always trying to figure out the “why” on pretty much everything around us. Historically, the research that led to medical discovery has viewed people – the ones most often called “patients” or “subjects” in medical research – as just that: subjects in an experiment. That thinking has shifted over the last half century, though, particularly in light of the story of Henrietta Lacks, and the efforts of her family to have her recognized for the scientific contributions that are her “immortal HeLa cells” legacy.

Which brings me to my topic, patient-centered research, and the question of if that’s even actually a thing in 2018. I had two experiences recently that had me thinking of two aphorisms – or what the 21st century calls “memes”:

  • YMMV – Your Mileage May Vary, meaning that what you experience in a situation might not be what the guy next to you experiences in the same situation;
  • Objects in mirror are closer than they appear – a warning label that is engraved on side-view mirrors on cars in the US, Canada, India, Nepal, and Saudi Arabia.

My two recent experiences, one at a workshop meeting organized by the Robert Wood Johnson Foundation and AcademyHealth titled “Moving Patient-Centered Care Forward: How Do We Get There,” the other at the wrap-up meeting for a PCORI research project, “Defining a Roadmap for Patient Engagement in Imaging CER” (CER = Comparative Effectiveness Research), gave me some strong signals that the research community is waking up to the power of co-design, and people/patient inclusion in all aspects of medical research.

The RWJF/AcademyHealth workshop was framed around a series of four questions that asked how people/patients and medical providers could team up to make patient-centered care, and research into patient-centered care, a reality. The workshop was researcher and policy wonk heavy, with a patient-voice cohort of a dozen people. When I asked why it was still taking so long to get research discoveries implemented at the point of care, there was some pushback from the research folks, who thought I was saying that research should stop once something was known.

This reaction, which expresses frustration with the person/patient community for not “getting it” that research is a never-ending process – nothing in science is ever 100% known, everything is under constant review and challenge, which is how science works – is very frustrating to me, and to every other person/patient who is invited to participate in discussions like this. Person/patient-centered research that includes actual persons (the ones called patients) in the research process is something the patient community celebrates. What we WANT, though, is to see discoveries arrive in clinics and communities, not lie dormant in journals, where those discoveries become grist for more science, but not for actual practice. We’re looking to short-circuit Max Planck’s statement, “A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die, and a new generation grows up that is familiar with it.” The only way to ensure the patient community, and the research community, can communicate well with each other without misunderstandings is to spend more time in each other’s company, at workshops like this, learning how to avoid what I call “the lost in translation effect.” That’s the YMMV thing I referred to up-post.

My experience with the PCORI-funded research project, and the wrap-up meeting I attended the same week as the RWJF/AcademyHealth workshop, was the one where the object (patient-centered research as an actual thing) in the mirror was pretty darn close: co-designed and implemented research was visible, and the communication between the research team and the patient-voice team was less fraught with lost-in-translation. Since the group had spent more than a year working on this project together, the communication kinks had been worked out over time, and we understood each other’s point of view well. The lost-in-translation stuff we encountered early in the project actually helped inform our work, and our insights in how to better co-design research based on our experience.

The PCORI project was an example of what I was asking for at the RWJF/AcademyHealth meeting: include people-commonly-called-patients in the DESIGN of research projects and activities. Then enlist us to participate in the implementation, the analysis of study results, and the public dissemination of results – THAT approach will drive wider, faster adoption of new discoveries and processes. An additional benefit will be to start eroding public distrust of science as something that “elites” do, that the average human is somehow seen only as a lab subject.

So hey, research and policy folks – work on having people/patients on your team from the very beginning. In fact, if you want to kick off some from-a-new-perspective discovery, ask patient communities to help you create your research question, and define your null hypothesis. Amazing stuff could ensue!

HealthTunes and MusicMedicine

Imagine a world where music is prescribed as medicine – HealthTunes calls this MusicMedicine – and your music prescription is just a click away.

HealthTunes is the only publicly available online streaming audio service created to improve your physical and mental health by pairing credible medical research with active music links.

Walter Werzowa (a musician, composer, sound inventor, and music producer) founded HealthTunes after learning his son was diagnosed with a rare medical condition. After visiting numerous physicians who recommended surgical treatment, Walter and his wife, Evelyne, decided to have their son listen to music inlaid with binaural beats and isochronic tones. Physicians saw a drastic improvement in his condition and began requesting more information from Walter and Evelyne on how they accomplished such a feat.

Subsequently, Walter decided to share his knowledge of the healing power of music and created the API for HealthTunes in the hopes of assisting others who suffer from complex medical conditions.

HealthTunes’ MusicMedicine regulates the autonomic nervous system and accelerates endogenous processes. Binaural beats, which are the result of two slightly different frequencies, create a third signal in the brain. Coupled with music, binaural beats restore and balance a patient’s physiology.

The goal is to allow everyone access to credible medical research explaining the benefits of the music they listen to. Thus, HealthTunes provides all users access to medical research from knowledgeable institutions as well as music therapy all in one place.

To use HealthTunes, simply go to the website, sign up, and music therapy is at your fingertips. Therapies can be listened to anytime, anywhere internet access is available and no credit card information is necessary. All therapies were created by music composers with medical research in mind to treat specific ailments.

Chemotherapy is very important in fighting cancer but can have unpleasant side effects. HealthTunes music has been shown to relieve chemotherapy symptoms in patients both during and after undergoing treatment.

Therapy for anxiety, depression, stress, as well as numerous other ailments is offered on the HealthTunes site. Chronic pain patients recorded 30 percent less pain perception after undergoing music therapy.

Walter strives to lessen the cost of medical care; therefore, the service is free to all patients. Donations, however, are accepted and greatly appreciated.

UCLA Medical Center Nephrology Department and UCLA Center for East-West Medicine endorse HealthTunes.

HealthTunes’ wish is to help you conquer obstacles you’re faced with while providing you with music therapy you can truly benefit from.

Take the Plunge: How Swimming is Empowering Cancer Patients

People with cancer can stand to benefit from the many positive effects of indulging in swimming. It is one of the top 10 favorite physical activities according to the 2013 Recreation Survey. Swimming for fitness also grew in popularity, jumping to 2nd place behind walking according to PHIT America. It not only keeps you in a good shape but also offers many advantages empowering patients with cancer. From acquiring survival skills to enjoying the soothing effects of the water, swimming is a form of physical and recreational activity that provides immense advantages to everyone.

Swimming is An Empowering Exercise

There’s probably nothing better than swimming. Often dubbed as the perfect workout, it is a less weight-bearing form of exercise supporting your body in the water. It enhances muscle strength, improves endurance and keeps you in a good shape. In addition, research studies show that swimming has positive effects on the mental health. It improves moods, relaxes and calms the body.

For patients affected by cancer, swimming is a physical activity that offers benefits during and after treatment. Studies also show that even those with advanced stage cancer can take advantage of the gains offered by the activity. It helps combat the side effects of the disease by decreasing the intensity of symptoms such as pain, fatigue, and peripheral neuropathy. Through physical activity, people with cancer can relax relieving stress and reducing depression caused by the illness. Quality of life is, therefore, improved through physical activity such as swimming.

A Skill with A Lifetime Value

Swimming not only provides physical and mental advantages to cancer patients, it is also a skill that you can use throughout your lifetime. It equips you with the ability to judge situations in the water, find the best solutions and cope with challenges. Although over half of Americans or 56% know how to swim according to the Red Cross Society, the ability to swim is not merely judged by being able to tread or putting your head above the water. It is also the skill to find a way out of dangerous situations and preserve your life. Swimming teaches you how to stay safe in the water. Moreover, the physical activity enables you to know how to rescue others who are in trouble safely. It also trains you how to overcome any fear that you may have such as being in or near to water and even drowning.

For patients who are going through the cancer disease, swimming is a great form of exercise that offers physical and mental benefits. It helps in decreasing the uncomfortable symptoms of cancer and assists in improving overall wellbeing. Above all, it is a life skill that can save your life and that of others.