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Living with a Cancer Diagnosis Amid the Pandemic


Living With a Cancer Diagnosis Amid the Pandemic from Patient Empowerment Network on Vimeo.

Empowered patients, Honora Miller and Barry Marcus, share what it has been like living through a pandemic while being immunocompromised because of their multiple myeloma diagnosis.


Transcript

Barry Marcus:

I have really never hesitated from telling people that I have cancer and I’m immunocompromised and it wouldn’t be a good idea for me to get together with them and people understand that. They know what kind of times were in so I feel like I haven’t really put myself at risk, I have gone out to dinner a few times at restaurants that have outdoor seating, which is now pretty common in my area, and I’m also very fortunate to have gotten both doses of the Pfizer vaccine, so the interesting part of that is going to be whether I’m going to change my behavior because of that, I know I will continue to wear a mask, always when I go outside even though I’m now vaccinated.

Honora Miller:

Yeah, I have found it interesting actually, among a group of my friends, we meet via Zoom every Wednesday, and it’s been interesting to see over the course of the year that we’re now in this. They certainly know that I am compromised, but they forget, and so, of course, I’ve been directed very clearly that I need to do as much sheltering in place as possible to not go grocery shopping, to have things delivered, or my husband often goes grocery shopping and to really…you know, I can’t go to the gym. The gym has been opened a couple of times during this process, it opens and closes, but I can’t go to the gym, I need to do my exercise differently, I can’t go swimming, so there have definitely been changes and I have taken extra care because I’ve really been told in no uncertain terms that I need to. I’m a little anxious about when my son, who I have a high school student, he’s been having remote school when he goes back to school, if I haven’t been vaccinated yet, I’ve been told that I will need to quarantine from him, so we’re hoping that everything will coincide so that I don’t need to do that.

It requires ongoing planning, and I do have friends who have just spent ski week up and Tahoe, and they invited me to come and I can’t come. It’s not something I can do now, and I feel clear in my mind that this is a period of time where I need to not do things so that I can tell the tale later on, and what this experience was like Once COVID is over ’cause it will be.


Read the Full PEN-Powered Activity Guide VI

How Can You Overcome Hurdles in Your Health Journey?


How Can You Overcome Hurdles in Your Health Journey from Patient Empowerment Network on Vimeo.

Empowered myeloma patients, Honora Miller and Barry Marcus, discuss the biggest hurdle they faced in their health journey and the importance of finding a healthcare team you are comfortable with.


Transcript

Honora Miller:

Hi, I’m Honora Miller, it’s my pleasure to be the Myeloma Network Manager for Patient Empowerment Network and I look forward to speaking with Barry Marcus.

Barry Marcus:

I’m Barry Marcus. I am 70 years old; I was diagnosed with myeloma in 2015. I am a retired Geologist, I worked for the sacrament of County Environmental Management Department for 20 years, and I’ve been retired since 2012. I think my biggest hurdle was finding an oncologist that I was very comfortable with that didn’t hesitate to give me all the information that I wanted, and it took me a while. When I first had my diagnosis, I was in a health plan where I had a very hard time understanding my oncologist, I didn’t have a lot of confidence in him, and I was able — because I had just turned 65 to get on Medicare and change health plans outside of the open enrollment process, and I was fortunate enough to find an oncologist that I now have complete confidence in, and I’ve been seeing him for four or five years now, and I wouldn’t want anyone else.

Honora Miller:

That’s great to hear that you have found someone you’re comfortable with. That makes such a difference. I found that for myself personally, the greatest challenge was to actually get diagnosed, I was comfortable with my medical providers, yet we didn’t know what was going on with me, and it was through their perseverance in tolerating my ongoing questions, they were really helpful in continuing to do testing, because we had no idea I had mild anemia that persisted and I had fatigue, and they had no idea what that was, and I was fortunate enough that I felt confident in those medical professionals that when I did get a diagnosis, through a lot of perseverance I felt like, okay, we got to roll. The data showed that I needed to move quickly. I can’t imagine what I would have done in that moment if I didn’t feel comfortable with them.

Read the Full PEN-Powered Activity Guide VI

Is There Value in Seeking a Second Opinion?


Is There Value in Seeking a Second Opinion from Patient Empowerment Network on Vimeo.

Empowered myeloma patients, Honora Miller and Barry Marcus, share the importance of getting a second opinion and how to navigate if you are reluctant to ask for another physician to review your case.


Transcript

Barry Marcus:

I sought out a second opinion right after my initial diagnosis, I knew very little about multiple myeloma when I was first diagnosed, and as I just mentioned, I didn’t have a lot of confidence in the doctors in my initial HMO, so I wanted to make sure just for myself and for the future, whether what they were proposing as a treatment plan made sense for me, and so I did seek out a second opinion and I was so glad that I did. It did give me a little bit more confidence in what the initial HMO was proposing because the doctor that I saw, said, Yeah, this is the correct thing to do for you. Now, since I’ve been with the same oncologist now for a number of years, I have gotten second opinions on things that he’s told me I wanted to do, and I did have to overcome my initial reluctance to do that for kind of fear of hurting his feelings or thinking that maybe he wouldn’t like me as much after that, but in speaking with many of the infusion nurses, they say it’s quite common and the doctors don’t mind at all, and it’s really something that I need to do to feel like I’m getting the best course of treatment.

Honora Miller:

I have found too that in speaking with people that same reluctance around not wanting to hurt feelings, but indeed the doctors themselves, I’ve have talked about it directly with my doctor, it’s so common at a practice. It’s just part of their world. Of course, we don’t know that and we’re trying to be sensitive, but they’re not concerned about it at all. In fact, even changing doctors, they don’t even blink at it because they’ve got so many patients that they don’t concern themselves when you decided to move on to a different doctor, ’cause I have changed doctors when I didn’t feel like it was the right fit, oncologists, and that has been a really good thing to do when I didn’t feel comfortable.

When I didn’t feel, I guess it was as a result of COVID, it kind of gave me like another lens to look at my relationship with my doctor and my comfort level, ’cause I’ve had several oncologists, several of them have moved on. Once I realized, okay, this is living with myeloma during COVID, do I feel comfortable with this oncologist being my doctor that I was realizing, no, okay, I need to switch doctors till I feel comfortable, and I did get a referral within the same practice of a different oncologist, and I’m so happy that I did that, ’cause it makes all the difference.

We communicate much more easily, and I feel like if anything goes on with COVID, like I could rely on him to make some good decisions around my health.

Barry Marcus:

One of the things that I’ve come to realize is that treating myeloma is just as much an art as it is a science, and there is no one-size-fits all for any patient, and if I get a suggestion from a second doctor, I bring it back to my primary oncologist, he’s been very accepting of it and willing to consider making some changes maybe that I got from seeking out a second opinion. So, I feel like I’ve been fortunate in that.


Read the Full PEN-Powered Activity Guide VI

Empowered Patients Empower Patients: How to Take Charge of Your Diagnosis

What comes to your mind when you think of the word “empowerment?” Do you think of a specific person, thing, or event? What about an “empowered” patient? Do you think of a patient or patient advocate who goes above and beyond and fights for their health care, or embodies themselves with a wealth of knowledge about a specific disease? At the Patient Empowerment Network (PEN), we believe that patients have power. They have the power to learn about and understand their diagnosis, find a healthcare team that understands their needs, values, and morals, and support other patients on their cancer journey – all to create better health outcomes. Are you looking to become an empowered patient? Here a few ways:

  • One of the most important things about your journey is that it is your own. No cancer diagnosis is alike, just like no patient is alike. Your story is unique, and the power of sharing your story is unmatched. Storytelling is what connects others and develops strong bonds. Share your story with your family and friends, post about it on social media, and connect with patient advocacy organizations (including PEN!) to share your story across the globe. 
  • Create your own advocacy blog: This article has how-tos and best tips. 
  • Participate in Tweet chats: Tweet chats are chats that occur on Twitter at different times/days using a hashtag. PEN has a tweet chat called #patientchat that occurs every other Friday. These chats are hosted by a variety of organizations around different topics. As a participant, you answer a series of questions prompted by the host. It can be a great environment to express your opinions and talk about your experience. You can find Tweet chats relevant to you by using Symplur’s Healthcare Hashtag Project, which lists hashtags specific to what you’re looking for. You can also see if specific organizations you’re following on Twitter host chats or start your own! 
  • Join a support group in-person or online. There are a number of different organizations that offer support groups (here are some of my favorites!) where you can share your story and hear other’s, ask questions, and relax knowing you’re in a judgement-free environment. 
  • Utilize PEN’s Digitally Empowered Program: This program consists of 10 modules with videos and resource guides to navigate all that technology has to offer including navigating healthcare resources, forming a support network, using social media, navigating your health with different devices and apps, and using telemedicine. 
  • Keep updated on the latest research about your diagnosis, and share what you find relevant to you with your healthcare team and/or on social media. This article explains how to read scientific papers. 
  • Utilize PEN’s online resources tailored to the cancer community, as well as specific cancers, that focus on what to do when you’re newly diagnosed, testing and treatment options, clinical trials, and accessing and affording healthcare. 

How Nurses Can Promote Patient Education?

This year has marked a significant shift in the way the average person receives care. In an attempt to protect patients from the coronavirus, more care facilities are conducting virtual appointments through telehealth as often as possible. But what does this mean for patient empowerment and education?

While there are many benefits to telemedicine, this medium of care can make it difficult to educate cancer patients and address all of their concerns. However, nurses can play a significant role in promoting patient education whether it be through virtual platforms or face-to-face.

Patient empowerment through education is a key element of care. To make the most of any situation, nurses must understand their role in promoting patient education and develop useful strategies for educating patients across a variety of mediums.

Here’s what you should know.

The Role of Nurses in Patient Education

When President Trump declared a national emergency because of the coronavirus pandemic, it initiated a legal expansion of telehealth services for millions of Americans. This brought about an explosion in telehealth options that had previously been more common for rural patients. Now, however, everyone from cancer to behavioral health patients is making frequent use of these systems, often with great results.

The importance of telehealth for the treatment of issues like behavioral health has reshaped the role that many nurses have in patient care, but it has not damaged the effectiveness of care. In fact, the majority of healthcare providers said telehealthcare was the same if not higher quality than traditional care.

To maintain this quality, the emphasis has been placed on forging bonds of effective communication, empowered by patient education. Among the many tasks of nurses in this process are the following:

Communicating with a physician while providing in-home care.

Especially in cancer treatment, strictly telehealth options are not going to cut it. Often, nurses will continue with in-home care strategies, which then require information to be relayed back to a primary physician.

Part of the job of a nurse is to maintain clear standards with the patient and the doctor, keeping them both informed on current health status and next steps. Patient education in this role can be a powerful tool in ensuring that the patient feels secure and cared for.

Facilitating consultations.

Additionally, nurses will act as facilitators of new telehealth communications with physicians either socially distancing or quarantining. This helps to keep all parties safe while assisting patients in using new tech.

Patients will come into an office, be screened by a nurse, have their vitals checked, and then begin a telehealth conference with a physician. Nurses must be prepared to answer a series of questions about the process and what can be expected, including assuaging concerns about the quality of telehealthcare. Patient education may be the most empowering form of care a nurse can offer in virtual visits like these.

Navigating new technologies.

With shifts in care processes come the need for nurses to adapt to new technologies. This can be difficult and requires flexibility and consistent communication with colleagues and patients.

In this role, it may be helpful for nurses to educate patients roughly on the ways new tech has changed care provisions and data management. Patients don’t necessarily need to navigate these systems themselves, but by educating them on how their data is stored and handled, you can help empower their security.

All these roles and more require nurses to educate patients regarding the care they are receiving, what they can expect, and the way systems have changed in what has become the new normal of health care. Nurses are often expected to serve as a communication bridge between physician and patient. Effectively achieving this means keeping the patient informed and up-to-date.

Luckily, there are some beneficial strategies to help nurses manage this colossal task.

Strategies for Promoting Patient Education

No matter the time or the health crisis at hand, nurses are some of the most important figures in patient education. These care professionals are the focal points of communication between physicians and patients, and as such will play significant roles in ensuring all patient questions get answered.

Whether you are operating through telehealth or in-person care, nurses can better promote patient education with the following strategies:

1. Maintain an empathetic approach.

No matter what role you end up occupying as a nurse, compassion and empathy will help you maintain a high standard for patient education. Empathy is essential to healthcare, as it allows providers to step into the shoes of patients and work out from there how best to help patients.

Empathy allows nurses to ask themselves what they would want to know at any point in the care process. They can then relay that info back to the patient in the form of quality education. By maintaining an empathetic approach, nurses put the human aspect back into healthcare.

Self-compassion is necessary for nurses as well, as they face high-stress environments that can quickly lead to burnout. Take some time for yourself to relax and de-stress.

2. Empower your patients.

Information is one of the most empowering tools that nurses have to offer patients. With proper health care education, patients are positioned to make informed decisions about their care options, giving them greater decision-making and financial power.

Nurses are instrumental in providing this empowerment. You can take your patients through questions, policies, standards, and even payment scenarios to keep them as informed as possible. In doing so, you will raise the standard for care through education.

3. Integrate tech solutions.

Wherever possible, introducing patients to new technologies can be a successful method of promoting education. From applications to facility patient portals, showing your patients how to navigate helpful technologies will put the power into their hands. Patients will be able to review their own records and information and can even track some of their own metrics through apps and wearables.

Healthcare tech is a teach-a-man-to-fish situation. If nurses educate patients on how to use the tools available to them, they will be better positioned to make valuable decisions regarding their own health.

With each of these strategies, nurses will be better positioned to provide patient education regardless of the role pandemic shifts have them play. Empathy will be key, then empowerment and tech solutions can offer patients unprecedented levels of quality in the outcome of their care. Promote patient education however you can to ensure that healthcare needs are met even in the middle of a public health crisis.


Additional Resources

  1. Tips to Improve Patient Education
  2. Teaching With Empathy: Why it’s Important

Meet a Recent Graduate of Our New Course, Digitally Empowered™

We’d like for you to meet Andrea Caldwell, a recent graduate of our Digitally Empowered™ course and digital sherpa™ program, conducted in partnership with the Cancer Support Community.

Andrea is already using her newly-gained digital literacy skills to access online healthcare resources. And not just for herself, but to support her Mom’s cancer journey, too. She was kind enough to share the details of her experience in the following video:

Andrea Caldwell Testimonial | I Hope That Other People Join In from Patient Empowerment Network on Vimeo.

Andrea enthusiastically encourages others to participate in these free programs:

“I recently had an emergency situation during which time I wasn’t able to use my cell phone. Thanks to the training I received from PEN’s virtual digital sherpa™ program, I was able to use my computer to communicate, which I never would have thought to do before. Thanks to this technology training program, I’m now reconnected to the world.”

If you know an older cancer patient who needs a technology skills boost, tell them about Digitally Empowered™, our free and easy-to-complete course that develops the skills necessary to harness online health resources, including telehealth. 

These and all of our programs are made possible thanks to the generosity of Patient Empowerment Network donors and volunteers like you.

We survived 2020! Now what?

I may be tempting fate by saying we survived 2020 when there are still 10 days left in the year as I write this, but I’m willing to take the risk. 2020 was officially “a lot,” with a global pandemic, a US presidential election marked by a level of vitriol not seen since the run-up to the Civil War, and systemic racism laid bare for all to see – not like it wasn’t plenty visible before, but now it cannot be swept under the rug anymore.

Not that everything has been dark and dire – medical science has long pursued “real world evidence,” the idea that all the data collected over the course of the delivery of medical care across a population could be synthesized into better medical treatment. The COVID pandemic pushed that concept onto the actual dashboard of care delivery, accelerating treatments and vaccines at a speed not seen before in the history of science.

But that same real world evidence data synthesis also made clear just how much systemic bias – gender, race, socio-economic status – is baked into healthcare systems and healthcare delivery, in the US and globally.

As we drag ourselves across the 2020 finish line, I’d like to present some pros, some cons, and some open questions we’re left with as we move into 2021.

First, the cons:

  • The world is drowning in a misinformation flood that prevents rational decision making about issues related to public health, civil rights, and even what facts are – figuring out how to combat this will take massive, concerted, global efforts
  • The global economy is a hot mess – the real downside here is how the fortunes of the ultra-wealthy have grown during the pandemic, with most of humanity left to figure out how to keep themselves going during shutdowns and job loss, along with loss of health coverage through their employers if they did lose their jobs
  • Any thought that humans are Earth’s apex predators should be completely erased by now – nope, viruses and bacteria rule the planet’s roost, we’re just along for the ride, with every other living thing
  • Systemic bias and racism are totally a thing – it’s up to us, all of us, to work together to erase it from medicine, from science, from civil society (this is actually a “pro” opportunity, too)

On to the pros:

  • Science has moved at light speed in the face of the pandemic – SARS-CoV-2 emerged in late 2019; the virus’ genomic profile was published in January 2020, making scientific study of transmission and possible treatments easier
  • Development of vaccines to combat the novel coronavirus happened within a calendar year – the usual timeline on vaccine development is 5 to 10 years
  • The world has been able to watch science happen in near real-time – as someone who tracks #epitwitter and #medtwitter and #EmergencyMedicine has gotten a front row seat to how medicine, and the science that informs it, isn’t a white-coated academic process, it’s a battle against time involving uncertainty and human cognition – “here’s what we know right now” is as good as it gets, moment to moment; adding those moments together is what reveals the scientific basis for vaccines and treatments

The open questions we’re taking into 2021:

  • How long with vaccine immunity last? That’s a question only time and data can answer.
  • How can we humans finally recognize that we’re a species, not separate groups of [insert ethnic or national identification here], and start working together to solve human problems? Like, say, income inequality and racism?

You’ll be hearing me again on all of the above through 2021. If you have any ideas on either of those “open question” bullets, hit me up on the Twitters at @MightyCasey.

Here’s to all of us surviving 2021, too.

A Patient Engagement Manifesto– 6 Principles of Partnership

Recently I presented at a conference on the topic of patient engagement. I spoke to the audience, mainly comprised of digital technology start-ups, about the need to find ways to engage patients meaningfully in healthcare design.  Too many developers think they understand what patients need, but in reality, many appear to be motivated more by the cleverness of a technology than actual improvements in health outcomes.  A 2015 study from the New York University School of Medicine Department of Population Health reported that only 29% of smartphone owners using health apps say the apps have made a big impact on their health.

In thinking about this month’s blog topic, it occurred to me that it might be useful to have some guiding principles you can turn to when you are next called upon to take on a patient advisory role. Whether it’s a clinical trial, a new app, or improving hospital safety standards, patients and caregivers are increasingly becoming engaged in the design process.  However, not every organization understands how to engage patients in a purposeful way. Frequently patient participation never moves beyond a tokenistic consultation or a tick box exercise. So it’s up to us as patients and caregivers to lead the way and show the healthcare industry what meaningful engagement really looks like.

In my talk, I presented a roadmap to guide developers towards a worthwhile way to engage patients. A roadmap can be equally relevant to you as a patient advocate to guide your participation in the co-design process. Each of the following six principles reflect the value of patients as experts with rich insights and experience. Never underestimate the expertise you bring to healthcare and don’t allow others to minimize your contribution. Lived experience is equal to other forms of knowledge, evidence, and expertise.  Clinicians may be experts in disease, developers in technology, but you are the expert in your own life. You know better than anyone what it takes to live with your condition every day and which challenges you face in managing your illness. Ultimately, it is your insights that will help build a better healthcare system or solution.

6 Principles of Patient Engagement – From the Patient Perspective

1. Engage Us in Ways That Are Personally Meaningful

In an article entitled, Who Gives Us the Right to “Empower” Patients? , the authors point out that the health care system “continues to focus on engaging patients in behaviors that are deemed desirable from a mainly biomedical perspective: taking medications as prescribed, or maintaining a BMI below 25, for example. These desirable behaviors are considered universal, and it is assumed that all patients should engage in them to be optimally healthy. No space is left for individual patient goals, needs, desires, abilities, backgrounds, and other factors that make humans, and humanity, so rich and diverse.”

You cannot design health care solutions or services without taking into account patient values and preferences and the context in which we live our lives. Healthcare is complex; it’s connected to a lot of things which have nothing to do with technology. A failure to recognise the complexity of health systems and the reality of patients’ lives will continue to lead to short-sighted health initiatives.

2. Engage Us Where We Are – Not Where You Wish We Were

The most successful health applications are those that understand the real-life problems that come with living with a condition and creates solutions that meet real life needs. If an application does not solve a problem for the patient, it will not be adopted. As Amy Tenderich, founder of Diabetes Mine has said, “we will use tools that answer our questions and solve our problems. We will avoid tools that help us do what you think we should do and we won’t use tools that add to the work of caring for ourselves.”

Alex Butler, in an article entitled How To Build Successful Mobile Health Applications, wrote, “The question is not, ‘Does it solve a problem for the developer, or even the patient’s clinician?’ The real question is, ‘Does it help the patient directly? ’  If an application is in any way a hindrance, or adds any further time to the investment people must make into their healthcare, it will not be used.”

3. Engage Us Early in the Design Process

A report by Accenture revealed that just two percent of patients at hospitals are using proprietary health apps provided for them. This staggeringly low figure represents an alarming waste of resources. Accenture concluded that hospital apps are failing to engage patients by not aligning their functionality with what patients actually need. For example, only 11 percent of the apps surveyed offer at least one of three functions most desired by patients: access to medical records; the ability to book, change and cancel appointments; and the ability to request prescription refills. If those hospital app developers had worked with patients from the earliest design stages, they would be much more likely to produce an end product that patients would actually want to use.  “Co-design,” in the words of Renza Scibilia in her recent post Co-designing Co-design, does not mean showing a finished product to someone and asking for ‘feedback.’” It’s about involving patients right from the start of the design process.

Similarly, when it comes to research, it’s important that patients frame the research question. Historically, researchers have framed questions which are not particularly relevant to patients. As an example, the research priorities of patients with osteoarthritis of the knee and the clinicians looking after them, were shown in a study to favor more rigorous evaluation of physiotherapy and surgery, and assessment of educational and coping strategies. Only 9% of patients wanted more research on drugs, yet over 80% of randomized controlled trials in patients with osteoarthritis of the knee were drug evaluations.

4. Engage Us in Progress Reports

Genuine engagement is about shifting the traditional paradigm of patients as passive participants, to one in which we are fully involved as contributors who have a sense of ownership in outcomes. However, I’ve lost count of the number of times I’ve been involved as a patient advisor on a research proposal or steering committee and received no updates on its progress.  In her brilliant post, Patient Engagement: You’re Doing it Wrong, Isabel Jordan captures the feeling of being used which many of us feel in this situation. “I traded my family’s story for what, exactly?” she asks, “I don’t know, because I was never informed. Engaging patients means keeping us informed of the results of engagement. What happened to me is harmful. It took me from my home, away from my family, put me in a place of vulnerability, and put me in a place where I wasn’t respected.”

Sue Robbins, another vocal advocate of meaningful engagement agrees, and asks the question “how is it that patients and families are used for their stories and then crudely discarded? Why has even the common courtesy of responding to emails gone?”

5. Engage Us as Equal Partners

I also believe that valuing patients as equal partners extends to paying them for their time and expertise. Not everyone agrees with this position. But if those round the table are being paid, why not the patient who is also sharing their time and expertise? As Annette McKinnon, a founding member of the Patient Advisors Network (PAN), puts it, “patients can work as hard as anyone else in the health professions, and yet they are the only ones at the table with no badge, and who are not being rewarded for their efforts?”

Tessa Richards, writing in the BMJ, puts forward arguments both for and against payment. Whether or not to pay a patient is contextual, however, she is clear that “in a consultation where other experts are being paid for their time, patients and patient advocates should be too, and this should be standardized. My time and experience are as valuable as any other person at the table who is getting paid for being there. It amazes me how often patients are just expected to be thankful to be invited.” To quote melanoma patient advocate, Kay Curtin, “This is a re-shaping in many ways of what are the defined roles in research. We are talking about the patients knowledge and experience being of equal status to that of all the other interested parties on what research grant money should be spent on.”

(Note: The Change Foundation in Canada has developed a useful decision tool to guide organizations on whether to pay “patient engagement participants.”)

6. Engage Us Beyond Our Stories

Jordan is unequivocal when she says, “stop engaging patients if you’re not actually ready to partner with them.  Stop using our stories to get money for your research and your clinical programs. Our stories belong to us. If you’re going to use me, then I’d better be making decisions with you.”

Engaging with us starts with our stories, but it shouldn’t end with our stories. We are so much more than just “the patient story.” Dig beneath the story and you will find that a patient isn’t a disease with a body attached, but a life into which a disease has intruded. Our stories are not pawns to be used and then discarded.  Respect and value them for being, in the words of David Gilbert, Patient Director @SussexMSK, precious ‘jewels from the caves of suffering.’

(Note: PAN provides some excellent tips on its website, for patients and caregivers who are asked to share their story or experiences. It includes the advice to decline to share your story if you are not emotionally ready to do so.)

Final Thoughts:  Be Prepared To Say No

In a thought-provoking and wonderfully—articulated post on the nature of meaningful patient involvement in pediatric neurodisability research, Jennifer Johannesen suggests that “if there is insufficient effort to justify and substantiate what is being asked of you, or it’s unclear as to why you’re involved, you can decline.”  I am in full agreement with Johannesen and find myself increasingly turning down requests to participate in projects these days on this basis.

I firmly believe that a shift away from the rhetoric of patient engagement towards a genuine model of partnership, needs to come from the ground-up. We as patients have to be, in Johannesen’s words the “conscience, and the critical voice.” We need to challenge patient tokenism and push for real outcomes. We need to spur organizations to design solutions that not only work technically, but make a real difference in the lives of patients.   Only then can we hope to see the true meaning of patient engagement become a reality. To steal a line from David Gilbert, “nobody is going to take us seriously if we don’t.”

 

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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What’s a Patient Scientist?

I recently attended a conference called “Patients As Partners” which focused on the benefits of Pharma companies using patients early during the development of clinical trials.  One company (I don’t remember which one) said that they had begun referring to patients in this role as “patient scientists”. I hadn’t heard this term before but it struck me as profound to the point where I even tweeted about it…and I don’t tweet on a regular basis.

Why did I find this term so encompassing?  First a bit of background.  I was diagnosed with a blood cancer called Multiple Myeloma and given 2-3 years to live.  That was 23 years ago but with lots of treatment…chemotherapy, 3 transplants (including one allogeneic transplant using donor stem cells), several rounds of radiation and 2 clinical trials.  During the last 15 years I’ve become quite active in myeloma: facilitating our local San Francisco Bay Area myeloma support group, volunteering with several myeloma advocacy organizations, and attending medical conferences like the annual American Society of Hematology and International Myeloma Working Group conferences.  And most recently, I’m helping provide a patient perspective during the design and approval of myeloma clinical trials for SWOG (a National Clinical Trial Network group) and the National Cancer Institute.

At these conferences and clinical trial meetings, almost all the attendees are MD’s and PhD’s and it can honestly be quite intimidating to ask questions and make suggestions. But then I heard the phrase “patient scientist”. In fact, none of those doctors in the room have the expertise that I do being a myeloma patient. None of them have been treated with chemotherapy, had a transplant, or been the “recipient” of a dozen bone marrow biopsy/aspirates. I really am an expert, or “scientist”, in being a patient, having experienced the physical and mental demands that go along with trying to survive with good quality of life.  And by sharing experiences with other patients, I’m able to offer a valuable perspective when designing future trials.  As a “patient scientist”, I take very seriously my role and the responsibilities that go along with it. And I’m always appreciative that those MD’s and PhD’s consider my input as they do each others.

Empowered Patient Nejat

Nejat is a 28-year student majoring in public health who attended our digital sherpa™ technology training workshop in Philadelphia, PA. After she shared her inspiring story with us, I asked if I could interview her to share her story of empowerment with you.

Kara: Why did you decide to study public health?

Nejat: I really decided to apply for public health because I wanted to do nursing but felt that I couldn’t get in. I never thought I would end up loving public health so much. It really helped me understand so much of my health. It really taught me how to advocate for myself. I am planning to apply for nursing school soon.

Kara: How and when were you first diagnosed?

Nejat: I was sick in January of 2017, the doctor told me that I shouldn’t have came to the emergency room for stomach pain.  He didn’t give me a CT scan, he tried to prescribe something for pain but I left after being upset. I had emergency surgery in March 2017 after I got sick in the morning and couldn’t stop throwing up. They told me I had a half cyst and half mass. Which measured about 17cm in my stomach The mass had immature germ cells which was considered cancerous.  I started chemo July due to being put on surveillance so when it started regrowing chemo therapy was the second step. I did 12 weeks straight of chemo. B.E.P was the regimen.

Kara: What does being an empowered patient mean to you?

Nejat: It means to go to the doctors office and know exactly what is wrong with you. To understand the options of treatments available. To request a second opinion and feel like you have a choice. To take control of your health and healing.

Kara: How did you know that you needed to advocate for yourself?

Nejat: I never liked not knowing what was wrong with me. I would research and read forums day and night. When doctors tried to plan according to what they felt best I always tried to understand it so I could figure out if it was best for them or me. Most doctors would tell me things off of research. During chemo most of what I experience was different than what they seen in research. I felt like if I never opened my mouth and spoke often. Those 12 weeks would have really been worse. Each new word I went back and googled the definition. Each symptoms I looked up. I dictated what I wanted and I can say it worked great in the end. I am on the road to recovery

Kara: How do you navigate advocating for yourself?

Nejat: I ask for options. I google everything, I look at forums. I join and ask questions.

Kara: Do you think that it is important to find a doctor that you feel comfortable?

Nejat: Yes! I had a doctor tell me she had to do surgery which didn’t align with what my other doctor told me. I told her no and went to a different doctor which gave me options. I felt that she didn’t hear my voice. She didn’t give me options. Yes I’m sick but let me feel I still have a little control of my decisions.

Kara: How has managing your condition affected your daily life as a college student?

Nejat: It starts with your mind set. I have been positive through out my journey. I am determined to not let my hardships be the reason I fail. I have my bad and good days but I try to keep pushing. I am still in school and a few months away from graduation. Though I’m still recovery I’m pushing. I do acupuncture to help my neuropathy and vitamin C to heal rebuild my body.

Kara: What are your tips to help someone become an empowered patient?

Nejat: Start with thinking positive you can make your journey less stressful with thinking positive always look for second opinions if you can. Trust how you feel and never look at cancer as if it’s the end keep fighting.

Introducing Darla Brown: An Empowered Patient

People with cancer who actively participate in their fight for recovery along with their physicians and healthcare professionals will improve the quality of their lives and may enhance the possibility of their recovery. Combining the will of the patient with the skill of the physician – A powerful combination.” ~ Harold Benjamin, PhD, 1982

In 2010 I became very sick. I was losing weight, had excruciating pain in my pelvis, and had extremely heavy, abnormal menstrual bleeding. I went to a doctor to get help. Unfortunately, that was just the beginning of my healthcare saga. I went through several late nights in emergency rooms (often sent away with painkillers), to more ultrasounds than I could count, to countless specialists, and yet the pain and other symptoms only worsened.

The first doctor I visited assumed the culprit was an ovarian cyst and each subsequent doctor I saw took her word for it.  I should admit something at this point in my story. Up until this point, I tended to be passive about my health care. I didn’t question diagnoses or treatments. When so many doctors agreed on my diagnosis, how could I question them? However, when I eventually became “patient active” (a term that I later learned), it actually saved my life.

One sleepless night, I woke up on the floor of my kitchen. The anemia (a result of the abnormal menstrual bleeding) had caused me to pass out while getting a glass of water and I had hit my head.  I went back to the doctor the next day and insisted more tests be done.  I implored, “Please don’t send me home again without a real diagnosis.” I demanded something be done. This was my first step to becoming an empowered patient.

Empowered patients realize that they have to make the healthcare system work for them. Through my experience I realized:

  • It is too easy to get passed around from doctor to doctor in our healthcare system. This wastes valuable time.
  • It is easy for doctors, who can be overburdened, to focus on the most squeaky wheel and forget about passive patients.
  • Had I been empowered sooner in my healthcare journey, I would have gotten to a diagnosis sooner and my cancer would not have become life threatening. My cervical cancer symptoms were actually evident from the start and yet I went undiagnosed for several months.

I was finally diagnosed with stage 2 cervical cancer and found a wonderful healthcare team at Cedars-Sinai Cancer Center. I didn’t have insurance at the time (I was too sick to work and this was before the ACA/Obamacare) but I did qualify for a California state run program called the Breast and Cervical Cancer Treatment Program (BCCTP).

By the time I actually got into treatment, the tumor had grown and had positioned itself inside my cervix so that surgery to remove it was no longer an option. Instead, I went through two months of daily external radiation, weekly internal radiation (also known as brachytherapy), and weekly chemotherapy treatments. I am so grateful that it was treatable, and I am thankful for the healthcare system that made it so. However, had I been properly diagnosed and treated earlier on, I would have required less invasive and less expensive treatments.

Since my diagnosis and recovery, I have spoken to many patients about their experiences and I am honored to be invited to share those stories and lessons in future blog posts.

The Best of 2016

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

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January

Designing With The Patient In Mind

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

Edward Leigh’s Top 366 Tips

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

February

5 Simple Steps to Become a Twitter Pro

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

Complications Post Cancer Treatment

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

March

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

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

Tweetchats: What Are They? How Can I Participate?

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

April

The Power of Content Curation For Healthcare Communities

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

Chronic Lymphocytic Leukemia (CLL) 101 Storify

CLL 101 is an online course offered through ePatient101.com created in partnership with the Patient Empowerment Network and Intake.me. To introduce our course, a #patientchat was held on March 18 at 1 PM EST and the included tweets are some highlights from the chat.

May

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

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

Latest Research and Advancement in Multiple Myeloma

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

June

Living Well With CLL

Interview with Patient Advocate, Jennifer Abraham.

What is Telehealth? How Can It Benefit Patients?

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

July

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

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

A Person Centered Approach To The Care of Chronic Illness

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

August

Spotlight on: MPN Cancer Connection (MPN-CC)

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

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

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

September

Seven Steps to a Successful Digital Advocacy Strategy

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

How Can Cancer Patients Contribute To Science?

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

October

The Benefits and Pitfalls of Blogging About Your Illness

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

Thanks to Social Media, Rare Progress on Rare Diseases

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

Chronic Illness: Oh, The Stress of It All 

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

November

The digital sherpa™ Workshop Main Takeaways

Overview of our pilot digital sherpa™ Workshop.

What Records Should You Bring For A Second Opinion Appointment?

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

5 Lessons Learned From An Ovarian Cancer Survivor

MyLifeLine.org founder and ovarian cancer survivor, Marcia Donziger shares 5 of the lessons learned after she was diagnosed with ovarian cancer at age 27.

December

Looking Back On 2016 With Andrew Schorr

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

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

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

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

Ben Goldacre writing in Bad Science classified science reporting as falling into three categories – wacky stories, scare stories and breakthrough stories; the last of which he views as ”a more subtly destructive category of science story”. Whether you get your news through digital or traditional means, you can’t fail to notice the regularity with which journalists report on the latest medical breakthroughs. Some of these reports are sensationalist (“coffee causes cancer”) and fairly easy to dismiss; but do you know how to separate fact from fiction when it comes to less sensationalist headlines?

The foundation of empowered patient-hood is built on reliable health information. This means not only knowing where to find medical information, but being able to evaluate it and knowing how it can be applied to your own, or your loved-ones’ particular circumstances. Headlines often mislead people into thinking a certain substance or activity will prevent or cure chronic 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 are designed to help sort the signal from the noise next time you read the latest news story heralding a medical breakthrough.

1. Does the article support its claims with scientific research?

Your first concern should be the research behind the news article. If an article contains no link to scientific research to support its claims, then be very wary about treating those claims as scientifically credible.

2. What is the original source of the article?

If the article cites scientific research you should still treat the findings with caution. Always consider the source. Find out where the study was done. Who paid for and conducted the study? Is there a potential conflict of interest?

3. Does the article contain expert commentary to back up claims?

Look for expert independent commentary from doctors or other healthcare providers to explain the findings (there should be an independent expert source quoted – someone not directly connected with the research).

4. Is this a conference presentation?

Journalists frequently report on research presented at large scientific meetings. It’s important to realize that this research may only be at a preliminary stage and may not fulfill its early promise.

5. What kind of clinical trial is being reported on?

If the news relates to results from a clinical trial, it’s important you understand how, or even if, the results apply to you. Quite often, news publications report on trials which have not yet been conducted on humans. Many drugs that show promising results in animals don’t work in humans. Cancer.Net and American Cancer Society have useful guides to understanding the format of cancer research studies.

6. What stage is the trial at?

Research studies must go through several phases before a treatment can be considered safe and effective; but many times journalists report on early phase trials as if these hold all the answers. The testing process in humans is divided into several phases:

  •  Phase I trials: Researchers test a new drug or treatment in a small group of people for the first time to evaluate its safety, determine a safe dosage range, and identify side effects.
  • Phase II trials: The drug or treatment is given to a larger group of people to see if it is effective and to further evaluate its safety.
  • Phase III trials: The drug or treatment is given to large groups of people to confirm its effectiveness, monitor side effects, compare it to commonly used treatments, and collect information that will allow the drug or treatment to be used safely.

Source: ClinicalTrials.gov

7. How many people did the research study include?

In general, the larger a study the more you can trust its results. Small studies may miss important differences because they lack statistical power.

8. Did the study include a control group?

A control group allows researchers to compare outcomes in those who receive a treatment with those who don’t. The gold standard is a “randomised controlled trial”, a study in which participants are randomly allocated to receive (or not receive) a particular intervention (e.g. a treatment or a placebo).

9. What are the study’s limitations?

Many news stories fail to point out the limitations of the evidence. The limitations of a study are the shortcomings, conditions or influences that cannot be controlled by the researcher. Any limitations that might influence the results should be mentioned in the study’s findings, so always read the original study where possible.

Useful Resources

  • Gary Schweitzer’s Health News Review website provides many useful resources to help you determine the trustworthiness of medical news. To date, it has reviewed more than 1,000 news stories concerning claims made for treatments, tests, products and procedures.
  • Sense about Science works with scientists and members of the public to equip people to make sense of science and evidence. It responds to hundreds of requests for independent advice and questions on scientific evidence each year.
  • Trust It or Trash is a tool to help you think critically about the quality of health information (including websites, handouts, booklets, etc.).
  • Understanding Health Research (UHR) is a free service created with the intention of helping people better understand health research in context. It gives clear and understandable explanations of important considerations like sampling, bias, uncertainty and replicability.

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