The 7 Habits of Highly Effective Patient Advocates

“Without doubt, you have to leave the comfort zone of base camp and confront an entirely new and unknown wilderness.” -Stephen Covey

Stephen Covey’s best-selling book, The 7 Habits of Highly Effective People was first published in 1989 as a business and self-help book. Covey presents an approach to being effective in attaining goals by aligning ourselves to what he calls “true north” principles. I was inspired reading this article by Melissa McAllister, to go back and read the principles behind the book to see how we might apply them to our advocacy work.

HABIT 1: Be Proactive

The first habit that Covey discusses is being proactive. I cannot think of a more apt description of patient advocacy – in order to be effective, we must be relentlessly proactive. Carolyn Thomas, a heart attack survivor, and author of A Woman’s Guide To Living With Heart Disease, tells the story of how her cardiac symptoms were dismissed when she was first admitted to the ER. She wonders had it been her daughter or sister experiencing the same symptoms, what would she have done? The answer: “screaming blue murder to get the help this other person deserved, with no thought whatsoever of being labelled as “difficult”. We need to be as strong and as diligent about getting help for our own medical needs as we’d be if we were trying to get help for our loved ones.”

HABIT 2: Begin with the End in Mind

Habit 2 suggests that, in everything we do, we should begin with the end in mind. We should envision the end result clearly and work with purpose toward achieving our vision of optimum care for ourselves and others.  One of the best ways to incorporate Habit 2 into your life, according to Covey, is to develop a Personal Mission Statement. Consider creating a Mission Statement to put your advocacy goals in focus and make your vision a reality.

HABIT 3: Put First Things First

In order to be effective, we must learn to prioritize our day-to-day actions based on what is most important, not what is most urgent. This means learning how to say no in order to focus on our priorities. As Covey puts it, “The key is not to prioritize what’s on your schedule, but to schedule your priorities.”  Dee Sparacio, author, blogger and ovarian cancer advocate, recently wrote on her blog about taking a step back from her heavy work-load of advocacy activities to focus on her priorities. She outlined a list of questions to help her decide which activities to prioritize:

  • How effective am I at doing that work?
  • Am I the only one doing that work?
  • If I am the only one can another advocate/person do it?
  • How much does the work benefit other survivors/patients?
  • How many people are effected by the work I do?
  • Do I ever regret having agreed to do the work and feel that way when I am doing it?
  • Does the work ever prevent me from doing other things – like hang out with my husband, grand-kids or dog?
  • Does that work bring me joy?

These questions can be helpful for us to look at our own activities and decide which advocacy roles we want to put on the top of our priority list.

HABIT 4: Think Win-Win

In our advocacy work, we will inevitably find ourselves in a situation where our wants and needs conflict with another’s. In order to practice this habit, we must commit to creating Win-Win situations that are mutually beneficial to each party. While recognizing this might not always be possible, this habit reminds us that we must at least try to understand the other person’s point of view and work if possible towards a mutually satisfying outcome.

HABIT 5: Seek First to Understand, Then to Be Understood

Communication is one of the most important skills we can develop. While many advocates can speak well, how many of us are good listeners? Listening and hearing are not the same things. Most people listen with the intent to reply, not to understand. Poor listeners are unable to separate their own needs and interests from those of others. They are more likely to interrupt and to jump to conclusions about what the other person is saying. Active listening requires critical thinking skills and emotional intelligence.  Developing the ability to listen deeply allows us to respond with an open minded empathy to another’s situation. We are less inclined then to interpret the other person’s words solely from our own perspective and frame of reference.

HABIT 6: Synergize

Synergize is the habit of creative cooperation. Covey describes this habit as one in which the whole is great than the sum of its parts: “It’s a process, and through that process, people bring all their personal experience and expertise to the table. Together, they can produce far better results that they could individually.”  From our own advocacy work, we know this to be true. We are stronger together. When we bring our collective voices, skills, and experience together, we achieve more. Covey points out that valuing differences is what really drives synergy: “When people begin to interact together genuinely, and they’re open to each other’s influence, they begin to gain new insight. The capability of inventing new approaches is increased exponentially because of differences.”

HABIT 7: Sharpen the Saw

Habit 7 is focused around taking time to renew our resources and health to create a sustainable long-term environment for our advocacy work. “Sharpen the Saw”, writes Covey, “means preserving and enhancing the greatest asset you have—you.”  In our desire to effect change quickly we can easily burn-out. Renewing ourselves physically, spiritually, emotionally and mentally will help us practice each of these seven habits more effectively. 

Some Final Thoughts on Being an Effective Patient Advocate

 I asked some of my favorite patient advocates to share their thoughts on what makes an effective advocate. Here’s what they told me.

“Passion, persistence, patience. Self-leadership, clear vision, courage (at least sometimes!) ‘We’ attitude, optimism, hope, trust, belief in basic goodness. Ability to listen, collaborate, cajole, criticise (constructively), take criticism.” – Anne Lawlor, Founder, 22Q11 Ireland

“Knowing when you need to talk about your personal view or experience and when you need to garner input from other patients. Nobody’s voice speaks for everyone.” – Alison Fielding, Chair Cardiomyopathy UK

“Passion, tenacity and balance. If you don’t have a passion for what you do, you tend not to give your all. Tenacity for it is inevitable that someone will tell you no or close the door in your face. When that happens you must remember your passion. Balance because you need a life.” – Anne Marie, lung cancer patient and blogger at These Are My Scars

“Perseverance, stand your ground, listen, don’t be afraid (to ask questions or admit you don’t know something) – remind others you want the same.  Understand your goals, what are you trying to achieve and why.” – Julia, co-founder #BCCWW

“Passion, commitment, belief in what you are doing, being a voice for not just you but many, speaking out, assertive, having your opinion doesn’t matter if it’s unique, a great communicator and networker, good listener, resilience and determination.”  – Jo Taylor, Founder, After Breast Cancer Diagnosis

As you can see so many of these responses echo the 7 habits above.  Patient advocacy requires self-belief and a clear vision for what you want to achieve. Above all, it requires dedication, persistence and commitment. I am so proud to be able to work among such passionate patient advocates. The work is hard and often goes unnoticed, but your reach and impact is immeasurable.

Negotiating Cancer: Tips From One Who’s Done It

Editor’s Note: This blog was written by Stefanie Joho, an advocate, speaker, and colon cancer survivor, for The Washington Post. You can see the original blog here.


At the age of 24, after two surgeries and two aggressive rounds of chemotherapy failed to cure me, my oncologist sent me home to die. When I was first diagnosed with colon cancer in 2013, I’d never even heard the word immunotherapy. I didn’t know that my doctors wouldn’t have all the answers. I thought clinical trials were last-ditch efforts rather than treatments that save countless lives. I didn’t know that a treatment geared to fighting my specific type of cancer and the genetic components of my tumor would go on to potentially offer tens of thousands of patients a revolutionary new path to surviving cancer in 2017.

Because I’m one of the very few lucky ones who looked into the abyss and made it out on the other side, I feel it is my duty to speak up and share some of the critical things that I have learned in what is now a new era in cancer care. Because a disease that should have killed me instead launched my career in patient advocacy.

[‘This is not the end’: Experimental therapy that targets genes gives cancer patients hope]

First and foremost, it is important to remember that every cancer is unique. Your journey will be different from mine. Your cancer is yours and yours alone. So think of the following points as “road signs.” They’re ones that I wish someone had shown me when I felt lost, with nowhere else to turn. The goal of this guide is to potentially help shape your thinking as you become an active participant in saving your life. More than anything, I hope it prompts you to question the presumption of cancer care for nearly a century.

1. The more we know, the more we can fight for our lives. 

We look to doctors in their white coats to be the experts — partly because, in a moment of such despair, we want to be able to look to someone to just give us the answers. But you should know that you will not find that person in anyone but yourself.

In the beginning of my cancer journey, I felt intimidated by my doctors and made several decisions that I now regret. I walked into appointments and agreed to everything instantaneously, without even considering a second opinion. As my cancer kept coming back and the treatments kept failing, I decided that the only chance I had to make it out alive would be to become an active participant on my journey. I would have to educate myself. I scoured the Internet. I became an “expert” not only in my specific disease, but also in the current cancer landscape.

I’m in no way encouraging you to become your own doctor and understand all the science. And I’m certainly not encouraging you to take everything you read on the Internet as fact. But in 2017, with the amount of accessibility to information, I’m encouraging you to seek it out. Never take anything at face value or trust blindly. Make informed decisions, not decisions based on fear. Walk into appointments with your doctors as an equal, not as a passive bystander. Being an informed cancer patient today is a full-time job. As with any job, that means learning new skill sets and finding the resources needed to succeed.

2. Asking questions is not making trouble. 

You will often be made to feel that being a “good patient” means not asking questions. But do not be afraid to speak up. Your life quite literally depends on it. Come into every appointment with a prepared list. If possible, bring someone with you who can take notes. If you are confused about something, ask. If you think of it later, write it down. Remember: You’re the one whose needs are paramount. You’re the one who is fighting for your life. Make every thought, concern and feeling heard. If it isn’t received the first time, say it as many times as necessary.

If you begin to develop a symptom from a treatment side effect or from the cancer itself, understand that it is the system’s job to help you get relief. If your doctors aren’t taking you seriously, do not believe their judgment over yours. And if you feel that your physician doesn’t understand or listen to you, then perhaps it’s time to seek one out who will. In my opinion, an individual who does not have empathy is not a physician.

3. No two cancers are the same. Become an expert in YOUR cancer. 

No two cancers are the same. Increasingly, knowledge of such individual variation is being shown to lead to more effective treatments. Ask your physicians and understand every type of genetic testing available to you. The more granular you can get about the specifics of your disease, the more you will maximize your chances of identifying the best possible treatment for your “personal” tumor. (Discovering the genetic biomarker of my cancer saved my life.) Continue to expand your resources so that you can be an expert in your own cancer.

4. Take note of EVERY potential side effect. Report everything. 

The incredible advances in cancer treatments have created a new set of challenges for clinicians, especially in how to identify the side effects. Given that these are new treatments, your doctors are not as practiced with them as they are with chemotherapy and radiation.

For example, immunotherapy is entirely different from traditional treatment. The former utilizes the patient’s own immune system, whereas the latter aims to attack only the cancer cells. Early recognition and proper management of side effects can make the difference between life and death.

Don’t hold back a single concern from your doctor and care team. Even if you think it sounds minuscule or irrelevant, your oncologist needs to know everything to best care for you. Listen to your body. Observe and report any changes.

5. Clinical trials are not a last-resort option.

The lines of treatment are rapidly changing, and, more often than not, getting access to cutting-edge treatments entails enrolling in a clinical trial. There’s an unfortunate misconception that clinical trials are reserved for those who have exhausted all other options. In reality, trials can actually offer access to the most individualized cancer treatment. And in fact, immunotherapy is more and more becoming the first line of treatment — and even being used before surgery to prevent relapses.

And just as individual patients can’t tackle their disease by themselves, we all ultimately must help one another by sharing and participating in clinical trials. Only 4 percent of cancer patients are currently enrolled in studies. Explore trials at cancer centers with a lot of experience in the type of therapy being tested. See if you have options outside of what has been standard of care for 70-plus years.

In the doctor-patient relationship, patients must understand that they are partners of science and as big a part of the cure as doctors. Without us, and our willingness to participate, medical advances would not exist. I will always feel a tremendous sense of pride for participating in a study that will save many thousands of people’s lives.

6. Cancer is not just a physical disease. 

It is critical throughout your journey to address the mental, emotional and spiritual aspects of this disease. Seek help, support and healing from other places, too. There are many schools of thought about why people become ill and what can be done to help them recover. It’s important to maintain your anchor in generally accepted medical principles, but don’t be afraid to look further up- and downstream to see if other currents of healing can add value for you and your care team.

As only one example among many, learning about nutrition made me feel as though I were actively fighting and doing something every single day to help my body heal.

7. Hope is a lifeline.

Don’t let anyone ever take that away from you. I believe in hope. Period. It saves lives. When your mind tells you that it’s over, the body has no reason to keep fighting. If you find yourself drifting in that direction, remember: “You haven’t failed the treatments; the treatments have failed you.”

Of course, doctors must tell their patients the difficult truth. But the specific words used to deliver such news matter. If your doctor is unable to provide you with hope or encouragement to keep fighting, find the hope and strength from within yourself and the loved ones around you.

8. None of this can be done alone. 

This might sound overwhelming. But with great power comes great responsibility. You are powerful, but you are not superhuman. Know your limits, and respect those limits.

Cancer is not a journey that you can navigate alone. The people and professionals with whom you surround yourself will alter the course of your journey. They will lend you strength when you feel you simply have nothing left to give.

If you physically or emotionally cannot actively advocate for yourself, then ask someone to be your advocate. When things were particularly bleak, my younger sister, Jess, often had to speak up for me. She knew what my doubts were, what my concerns were and what was important to me. She became my voice when I didn’t have one.

Create a health-care team that listens to you and cares about you and includes you in every aspect of your decision-making process.

Lastly, and so very importantly: Connect with others in the community. As much as your loved ones will do everything in their power to be there for you, they simply will not be able to understand the complexities of what you are grappling with on a daily basis. Making friends with other cancer patients (even through social media) enabled me to share the fears and anxieties that I was too ashamed or embarrassed to talk about with those who weren’t confronting their own mortality. I could speak openly about my side effects, the changes taking place in my body, my isolation. I could utter the words, “I’m ready to give up,” without the looming guilt associated with saying that to loved ones.

It certainly doesn’t have to be about only cancer, all of the time, but knowing that this kind of support exists is healing. It makes you feel understood.

Patient Advocacy: Understanding Your Illness

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

1. Obtaining Information From Your Doctors And Healthcare Team

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

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

Some questions to ask your doctor about your diagnosis:

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

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

2. Finding Reliable Information Online

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

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

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

3. Evaluating Medical News Reports

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

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

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

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

4. Learning From Peers

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

Final Thoughts

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

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

Fact Checking 101: Health Literacy in Real Time

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

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

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

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

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

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

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

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

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

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

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

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


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

Mobile Doctor’s Appointments? Do They Work?

Dr. On Demand Dashboard

Dr. On Demand Dashboard

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

Before

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

During

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

After

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

Overall

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

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

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

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

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

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

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

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

Use this common medical mnemonic to guide you.

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

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

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

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

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

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

9. Medical care is a conversation. So to have influence in that conversation you have to speak up. If you don’t want the treatment your doctor recommends (or you’re not sure), it’s reasonable to ask if there are other treatment options available. Never be embarrassed to tell your doctor if you don’t understand something she has said. Sometimes doctors use medical jargon without realizing they are not explaining things in terms we understand. Repeat what the doctor has told you to be sure you understand and ask for clarification if needed

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

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

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

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

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

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

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

Finding The Right Oncologist For You

finding-the-right-oncologist-for-youWhen you put your life in someone else’s hands, you need to feel completely comfortable and confident with that person – especially when that person is your oncologist. How do you go about finding the right one for you?

One of the best ways to find an oncologist is through referrals from people you trust, such as your primary care physician, family, friends, local hospitals or your insurance company. Many insurance plans allow their members to search doctors by name or specialty. The American Society of Clinical Oncology (ASCO) provides a free, searchable database of ASCO member oncologists. These doctors opt to make their information available to the public.

Other medical associations offering searchable databases:

Once you have collected and written down a few possible oncologists’ names, remember to ask yourself these three questions:

What are their credentials?

Board certification is one of the most important factors you should consider when choosing an oncologist. It assures you that the doctor has the necessary training, skills, and experience to provide healthcare in oncology. Additionally, choose a doctor that treats your specific type of cancer and has related experience with that disease. The more experience the doctor has with a certain cancer, the better your outcome will likely be. Your doctor’s hospital is your hospital, so don’t forget to research the quality of care offered at that location as well.

What blend of traits are important to you?

Languages spoken, gender, and education may be important to you. You may also have strong feelings about personality and bedside manner. Some people want their doctors to have a business-like manner, while others value a doctor who can help with their emotional health as well as their medical needs. Whatever your preferences, the most important thing is finding an oncologist with whom you are comfortable.

What is their communication style?

Choose a doctor that values and respects your questions and answers you in a way that you can understand. Clarity and candor are highly important characteristics for a doctor. Make sure that your doctor values both shared decision-making and the best available clinical evidence, as well as your personal values and preferences throughout your treatment.

Once you have found a doctor that meets all the above criteria, ask him or her for an introductory phone call before scheduling an appointment. You should interview your potential oncologist the same way you would interview a lawyer or an accountant. Don’t be afraid to set-up introductory calls or appointments with a few oncologists for comparison. You may also want to consider the size of your doctor’s staff and accessibility to clinical trials.

Alongside considering size of practice, clinical trials or proximity to home, make certain that your new oncologist is someone you can work closely with and trust. Your new doctor will become the most valuable member of your cancer team, so it is imperative that you choose a doctor with whom you are comfortable.


Resources:

http://www.cancer.net

https://www.healthgrades.com/explore/8-tips-for-choosing-an-oncologist

http://www.cancer.org/treatment/findingandpayingfortreatment/choosingyourtreatmentteam/choosing-a-doctor-and-a-hospital

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

“Tell me and I forget. Teach me and I remember. Involve me and I learn” – Benjamin Franklin

As gravity shifts away from health care providers as the sole keeper of medical information, the importance of sharing decisions, as opposed to clinicians making decisions on behalf of patients, has been increasingly recognized. Shared decision- making (SDM) is 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. While the process commonly involves a clinician and patient, other members of the health care team or friends and family members may also be invited to participate. 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. It is thus a communication approach that seeks to balance clinician expertise with patient preference.

Dr Mohsin Choudry describes shared decision-making as “a way of transforming the conversation between doctors and their patients so that the thoughts, concerns and especially the preferences of individuals are placed more equally alongside the clinician’s expertise, experience and skills.” Before physicians can really know what the proper treatment is for a patient, they must understand the particular needs of their patients. This approach recognises that clinicians and patients bring different but equally important forms of expertise to the decision-making process. The clinician’s expertise is based on knowledge of the disease, likely prognosis, tests and treatment; patients are experts on how a disease impacts their daily life, and their values and preferences. For some medical decisions, there is one clearly superior treatment path (for example, acute appendicitis necessitates surgery); but for many decisions there is more than one option in which attendant risks and benefits need to be assessed. In these cases the patient’s own priorities are important in reaching a treatment decision. Patients may hold a view that one treatment option fits their lifestyle better than another. This view may be different from the clinician’s.  Shared decision-making recognises a patient’s right to make these decisions, ensuring they are fully informed about the options they face. In its definition of shared decision-making, the Informed Medical Decisions Foundation ,  a non-profit that promotes evidence-based shared decision-making, describes the model as “honoring both the provider’s expert knowledge and the patient’s right to be fully informed of all care options and the potential harms and benefits. This process provides patients with the support they need to make the best individualized care decisions, while allowing providers to feel confident in the care they prescribe.”

By explicitly recognising a patient’s right to make decisions about their care, SDM can help ensure that care is truly patient-centered. In Making Shared Decision-Making A Reality: No Decision About Me Without Me, the authors recommend that shared decision-making in the context of a clinical consultation should:

  • support patients to articulate their understanding of their condition and of what they hope treatment (or self-management support) will achieve;
  • inform patients about their condition, about the treatment or support options available, and about the benefits and risks of each;
  • ensure that patients and clinicians arrive at a decision based on mutual understanding of this information;
  • record and implement the decision reached.Screen Shot 2015-10-29 at 4.43.27 AM

The most important attribute of patient-centered care is the active engagement of patients in decisions about their care.
“No decision about me, without me” can only be realised by involving patients fully in their own care, with decisions made in partnership with clinicians, rather than by clinicians alone. This has been endorsed by the Salzburg Statement on Shared Decision Making, authored by 58 representatives from 18 countries, which states that clinicians have an ethical imperative to share important decisions with patients. Clinical encounters should always include a two-way flow of information, allowing patients to ask questions, explain their circumstances and express their preferences. Clinicians must provide high quality information, tailored to the patient’s needs and they should allow patients sufficient time to consider their options. Similarly, in Shared Decision Making: A Model for Clinical Practice, the authors argue that achieving shared decision-making depends on building a good relationship in the clinical encounter so that patients, carers and clinicians work together, in equal partnership, to make decisions and agree a care plan. According to the Mayo Clinic Shared Decision Making National Resource Center, this model involves “developing a partnership based on empathy, exchanging information about the available options, deliberating while considering the potential consequences of each one, and making a decision by consensus.” Good communication can help to build rapport, respect and trust between patients and health professionals and it is especially important when decisions are being made about treatment.

Decision Aids

One of the most important requirements for decision-making is information. There are a number of tools available to support the process such as information sheets, DVDs, interactive websites, cates plots or options grids. Decision aids that are based on research evidence are designed to show information about different options and help patients reach an informed choice. The Mayo Clinic has been developing its own decision aids since 2005 and distributing them free of charge to other health care providers. For instance, Mayo’s Diabetes Medication Choice Decision Aid helps patients choose among the six medications commonly used to treat type-2 diabetes. Patients choose the issues that are most important to them, for example, blood sugar control or method of administration —and then work with their physicians to make comparisons among the drugs, based on the chosen criterion.

Discussing their options and preferences with health professionals enables patients to understand their choices better and feel they have made a decision which is right for them. Research studies have found that people who take part in decisions have better health outcomes (such as controlled high blood pressure) and are more likely to stick to a treatment plan, than those who do not.  A 2012 Cochrane review of 86 randomized trials found that patients who use decision aids improve their knowledge of their treatment options, have more accurate expectations of the potential benefits and risks, reach choices that accord with their values, and more actively participate in decision making. Instead of elective surgery, patients using decision aids opt for conservative options more often than those not using decision aids.

Barriers to Shared Decision-Making

Barriers to shared decision-making include poor communication, for example doctors using medical terminology which is incomprehensible to patients; lack of information and low health literacy levels. It is worth noting that not everyone wants to be involved in shared decision making with their doctors; and not every doctor wants to take the time. Some patients come from cultural backgrounds that lack a tradition of individuals making autonomous decisions. Some health professionals may think they are engaged in shared decision-making even when they are not.

Shared Decision-Making – An Ethical Imperative

With this proviso in mind, it is nevertheless clear that the tide is turning toward more active patient participation in decisions about health care. Research has shown that when patients know they have options for the best treatment, screening test, or diagnostic procedure, most of them will want to participate with their clinicians in making the choice. A systematic review of patient preferences for shared decision making indicates 71% of patients in studies after 2000 preferred sharing decision roles, compared to 50% of studies before 2000.  The most important reason for practising shared decision-making is that it is the right thing to do. The Salzburg Statement goes so far as to say it is an ethical imperative and failure to facilitate shared decision-making in the clinical encounter should be taken as evidence of poor quality care. Evidence for the benefits of shared decision-making is mounting. Providing patients with current, evidence-based information, relevant decision aids and giving them time to explore their options and work through their concerns, will help patients choose a treatment route which best suits their needs and preferences, and ultimately lead to better health outcomes for all.