The conference, in its 9th year, has a unique perspective: advancing empathy in health care.
The opening session grabbed everyone’s attention, with a 35 year old opera singer who was a double lung transplant recipient, and also a cancer survivor…plus her doctor, who wasn’t there to talk about her patient, but the physician’s own experience having a stroke (while she tried to continue doing rounds and catching up on paperwork. Doctors make the worst patients!)
Other general sessions included the founder of Death over Dinner, promoting conversations and advanced care planning (without calling it that) and the amazing story of Jonathan Godfrey, a trauma flight nurse who survived his helicopter crashing into the Potomac. The conference closed with Leilani Schweitzer, whose son died due to medical errors, and is now a patient liaison who speakers about safety culture in hospitals. Kelsie Crowe spoke about Help Each Other Out, her non-profit organization to teach empathy during tough times…to everyone.
Besides attention-commanding presentations, breakout sessions included words like holistic, joy and meaning, gratitude and fun. Phrases in the program included “hacking empathy,” “organizational grit,” “navigating uncertainty,” plus “empathy in times of suffering.” Sessions includes strategies of empathy for transgender patients, opioid addicts, difficult parents of pediatric patients and even more difficult co-workers. Multiple sessions focused on workplace culture, medical residents’ wellness groups and combatting physician burnout.
The most pervasive topic though was…caregiver burnout. CCF defines all of their employees as caregivers, so this includes physicians, nurses, admins, therapists, maintenance and food service, parking and hotel staff -- everyone. Multiple vendors, including EPIC, Microsoft and Press Ganey got a bit of scrutiny as many discussions focused on how challenging it can be to have energy for empathy when there are so many metrics to try to meet, plus tech challenges eating up the day. It’s a tightrope to walk the emphasis on technology and data as a problem solver to free up more time, while being realistic about how that actually plays out in daily practice.
One of the most compelling sessions was from a performer / doctor known as ZDoggMD, who begins as a comedy act and gets many jabs in at the “data industrial complex” that is the current trend in health care. His message was humorous and full of pop culture, skewering the dysfunctions of health care. But he also is very direct about the pain of burnout, a lack of meaningful impact in their daily work and the future of medicine should be high touch, team focused and doctor directed. Through humor, satire rap videos and his personal experience with Health 3.0 (an experimental primary care practice in Las Vegas that ultimately closed due to reimbursement issues.)
The conference itself included art therapy, self-care walking tours, lavender oil in the tote bags and healthy snacks (including little buckets of veggies.) Audio vignette sessions with patient stories were set up at multiple places with MP3 players to check out to listen, and response boards covered in Post-It notes as an interactive activity.
Overall, I found it provocative, innovative and inspiring. There are serious challenges in health care, and it’s incredibly intricate and complicated to try to know what to fix first, but rooting our efforts in the human experience will anchor us as we endeavor to help people, without burning ourselves out.
P.S. Here’s the full agenda / speakers for the conference.
Anytime I go to a doctor's office, a hospital or a pharmacy, I like to think of this as "fieldwork" for my area of expertise. Because I write about health care in the real world, it's important that I know what happens "on the ground" in the physicians' waiting rooms, the hospital floors and the pharmacy counter.
Often, my contacts at the health system or the pharmaceutical company assume that processes go the way they are supposed to. However, this is one of the things I find so fascinating about medicine -- the human element always emerges. Sometimes systems can handle that, and sometimes they can't.
I recently had surgery, and of course, I'm a better-informed-than-average patient. I scrutinized the recommendations, the doctor reviews and cross-checked whether I really needed the surgery. Having satisfied my questions, I scheduled it. Then I had to cross the incredible bridge of surgery prep. I read the "Patients' Guide to Surgery" produced by (someone like me) in the hospital marketing department. I read the handouts from my physician (even the parts crossed out by the nurse that didn't apply to me!)
And still, in this fieldwork, I found some mysteries. Why couldn't I wear nail polish? Did that include toe nail polish? I knew I couldn't eat anything after midnight, but not even tea? no water? This was arduous for a person who constantly hydrates like me. What I wanted more than instructions was the rationale. (See Gretchen Rubin's Four Tendencies -- I'm a Questioner.) I'm happy to comply when I know why!
So I did my own searches on the internet. I asked my nurse friends and relatives. I looked at recovery yoga breathing videos. And I went in prepared. In fact, the last thing I remember before going under was talking to my nurses about all the services that my health communications company provides. #alwayshustling
But, not everyone asks the questions, even if they want to. And more importantly, how many people don't follow the instructions because they didn't read them, they didn't understand them or they fibbed about when they did them?
The answer to the nail polish question is: it can interfere with the pulse oximeter, so you need ONE nail free of polish, and it doesn't apply to the toes.
The answer to the water question is more complicated. It's to avoid aspiration of food particles or liquid into the lungs while under anesthesia. But there's some controversy over whether two hours prior is enough time. More on that as the research evolves.
This week, I interviewed a surgeon about the very same type of surgery that I had last week. I thought maybe I could just not mention it, but turns out -- I had to, because I have what's known in the industry as "lived experience." This is one of the most interesting challenges for medicine today, I think -- the integration of clinical knowledge and procedures with how things actually work in the real world. It's a constant striving to make things optimal (the cleanest incision, the tightest margins, the fastest recovery) while acknowledging that everyone has their own particular situation (their health history, their phobias, their home environment.)
I'm happy to continue my fieldwork, but let's hope it's all outside the operating room for awhile!
Besides reading about modern health care innovation, I love to read historical and fantasy fiction and watch historical dramas. One things I've noticed is this: health care skills have always been valued. I expect this will continue.
Take the case of Claire Fraser, heroine of the Outlander series. She's a time travelling nurse who goes from World War II to 1743, and although she lands in hot water almost immediately, she is able to win the trust of her captors with her medical skills. Not only is she an amateur botanist, she knows about...germs! Which puts her ahead of her sudden contemporaries. She's got excellent diagnostic skills, having read and seen all manner of illness in her time. Ms. Fraser is experienced with sutures, tinctures and identifying whether a rash is a serious or fleeting illness. Her skills amaze others and she saves lives and wins the trust of many who help her find her way. (Of course, much of the delight of her skills for readers is that in 1743 everyone thinks she's a witch...but it's just modern medicine transported 200 years in the past!)
Same with Doc Cochran, the only medical professional in Deadwood -- based on a true town in South Dakota. He's a grump Gus, and he should be because his patients are nearly all in bad shape. They've been injured in a mine, shot in a gunfight or are infected with a veneral disease. The show is all about this violent town's struggle for gold and independence, but Doc is able to disagree or raise a holler without any consequences...because everyone knows they soon may need his services. No matter how vicious relations get, the Doc is able to treat people, insist on better public conditions and even defy some of the more powerful people to do what he needs to do, because he has the medical skils that anyone may need imminently.
I note these two characters, but there are many more, on apocalypse shows like The Walking Dead or CW's Hart of Dixie or BBC's Call the Midwife that make the same point. People will always be in need of health care, at some point. That makes these skills invaluable -- and I would like to note, we need to prioritize public first aid response training, professional health care education AND preventing burnout for our health care professionals, too. It's part of the human condition, and today we know that more than ever -- so we should be ensuring that we recognize this value.
I often advise clients that while they can just go ahead and do what they want, it's always good to talk to current and potential clients to find out what they want. If the business owner wants to listen to that and go in a different direction, that's his right to do that. But then, it's an informed decision.
I get it -- some people feel strongly that you need to lead your customers, that they don't know what they way. And you don't want to try to be all things to all people -- also an important and overlooked concept, to inhabit your niche fully. But a lack of listening means that there isn't the "push and pull" process that needs to be there.
One place I see this all the time is when scheduling times: opening / closing hours for businesses, the times they have classes, or town hall meetings for employees or recognition breakfasts. Is this a good time for people to attend? Do they mostly do their shopping in the morning and you should open earlier? Is lunchtime yoga actually practical? If you are trying to thank employees or customers, maybe you should make sure they can attend -- is it before or after work? If it's during work hours, can they actually attend?
I see this often with doctors' offices -- they want standard opening and closing times, with a break for lunch. Is this helpful for patients? Would they rather have evening hours? Saturday morning appointments? And really, I think none of them want to you to close for lunch -- because most patients will be calling you on their own lunch breaks! To serve patients best, we need to ask -- what do you need? what do you prefer? what else could we be doing? This is where innovation can happen, as well as service recovery, where you address an issue that could potentially damage your reputation with a consumer.
This is where surveys are fantastic. You can offer options, times, prices and a prioritization of needs. You can set out how you are doing it, how you are considering changing that and ask for feedback on any gaps. Don't forget focus groups, feedback events, check-in calls and celebratory events, as well as surveys. Listening offers information for you, but also conveys that you care about your customers!
I found an old photocopy of a book I read in college for my journalism class called "Breaking the News" and I'd copied the section health care reform.
Here are some quotes that could have been written today, rather than in 1998:
"...the market for medical care did not operate in the same way as markets for imported cars, or houses, or anything else...the health care market differed from other markets in that people don't even do the paying themselves, at least not at the time they get the care. I n a perfect market situation, the purchaser will have free choice among many alternatives, he will have full knowledge about the selections and he will have an incentive to economize. In the medical market the customer often has non of those things...the patient is often the object of this process rather than a participant in it."
Sounds the same, right? Despite attempts to make health care more transparent, people largely make their decisions based on "is this covered by my insurance?" or more commonly, "I hope this is covered by my insurance...I guess we'll find out."
"Businesses were in a panic about medical expenses, and so were any public officials responsible for a budget. The United States spent twice as large a share of its national income on medical care as the average for other developed nations. The money bought the world's most advanced and high-tech treatment for certain maladies but it also left the US with a higher infant-mortality rate and a lower life expectancy than in other advanced societies."
Panic, check. Highest infant-mortality rate, check. Lower life expectancy, check. And we are still spending WAY more than other countries on health care: OECD data shows the U.S. spent 17.1 percent of its GDP on health care in 2013, 50 percent more than France and almost double the United Kingdom's spending.
"The strongest argument for single payer is, strangely, that it would be anti-bureaucratic. The great administrative nightmare in American medicine is the need to keep track of dozens of reimbursement forms from dozens of insurance companies, each with its own rules about payment rates and authorized courses of care."
Bureaucratic nightmare? Yep. Possibly we've gone further in our agreement that routing health care through employers is a difficult way to cover stay-at-home parents, entrepreneurs and small business owners. So, as we look at the future of American health care...what can we expect? Surely, change. But what kind? Time will tell.
I went to a economic summit in Virginia recently...and there was quite a buzz from the people sitting around me. It wasn't about the economic data. It was about the speaker, who admitted he was from California, repeatedly calling a city in western Virginia "Stawn-ten."
Well, we are very particular here in the Commonwealth about the way things are pronounced (also, about being a Commonwealth!) Especially our inherited English city names. It's "Stan-ten." (Yes, we know there's a U in it.) It flags you immediately as an outsider, (or an unprepared speaker.)
My point? No matter how globalized we get -- there are some local things that show you are part of the community, that you are familiar, that you took the time to get to know us. I doubt this will ever change. Like the recent holiday gifts: I got Malley's Chocolates from Cleveland, and my husband got Esther Price Chocolates from Dayton. Are these Ohio candies all that different? Probably not, but our childhood memories are, and that goes directly to the brand.
It's the same with any marketing -- it needs to take into account the uniqueness of the people who live in a regional, and respect it. There is no one size fits all, and I think it's human nature to want to distinguish ourselves. We want to know that we are not like everyone else, personally and as a community. It's why local breweries are doing so well, why farmers markets are popping up everywhere and artisan goods are getting a premium.
Hospitals, once stalwart icons of the community, would do well to remember their roots as well. The trend toward larger system franchises offers more access and more resources, but health care is deeply personal, and that should always be in the forefront.
I just returned from the PCORI Annual Meeting (if you don't know about this amazing organization, check it out!) which includes patients, caregivers and patient advocacy organization representatives. I also learned about the concept of Patients Included, which certifies that at least one third of attendees are patients or caregivers. (As one health care professional who was not at the conference said to me: "Why would you do that?")
I attend a number of professional events every year, conferences for the American Hospital Association or the Cleveland Clinic or regional health care seminars. And there's a difference. It's not just that the patients are represented -- it's that they fundamentally change the way the conversations go. They are the experts on their own conditions. They also know that a condition doesn't exist in a vacuum. Just because you have breast cancer doesn't mean you don't also have asthma. Just because you have asthma doesn't mean you don't have HIV. Just because you have HIV doesn't mean you don't have Crohn's disease. Life is complicated.
You know what else people forget? We're all patients.
We're also almost all caregivers. We can be a patient, a caregiver AND a health care professional all at the same time! I think that for simplicity's sake we like to put everything in one box. But PCORI, remarkably, has a "check all that apply" mentality.
That's reality. But for the non-health care professionals who attend, they bring something different -- a way of approaching things with different expertise. They don't dismiss the costs of treatment, the number of appointments to arrange transportation to or the hard work that has to happen at home for medications, dressings or physical therapy. They constantly remind everyone that the plan needs patient input or it won't succeed.
I know it's taking a long time for this to sink in...but it's happening, and I think health care will be better off for it.
I almost sent off a piece to a client yesterday that had this phrase in it: lunch cancer. It was a piece about...lung cancer. Ouch.
I often hear that copyediting is not needed anymore because of spellcheck and her (mostly annoying) sister, grammarcheck. You can also make an error that turns a word into another word -- just ask anyone who has accidentally arrived to a presentation with the word "pubic" where "public" should be!
But it's really about USAGE, not spelling. If you have an actual word, in the wrong place you won't know it unless you reread the piece. The gold standard is to print it out and read it out loud. If you don't have time for that, ask someone else to read it. Or just read it one more time, even if you don't think you need to -- you'll likely catch at least one small thing.
Here's an example of a perfectly fine paragraph that spellcheck won't catch:
I had two go to the principle's office yesterday, were I saw the affects of what I had bone. Through I had fried my best, I had to except that their where consequences to my factions. Your write to tell me that I'm thorough in this school for ever, but I'm to sad too talk about it at they moment. Its the end of the rode for my career as a spelling teacher.
It doesn't mean don't run the spellcheck tool, it just means spellcheck will not save you. Don't expect it to. Always read your writing twice. Always read your writing twice.
For months, I've been carrying around a stack of papers in my planner. It's about four pages, stapled. It's my son's occupational therapy evaluation report.
I'm not carrying it around because I need it for any reason. I'm carrying it around because of a highly annoying, yet highly prevalent health care issue: electronic medical records.
My son's therapy office emailed me the report. Great. I've used that method to share it with the school nurse and teachers. But I called my pediatrician's office and asked them how I could share that with them, and they said they could not accept it via email.
But I could fax it. Ha! (I haven't used a fax machine in years. In fact, my office doesn't have one.)
More importantly, it makes no sense to take electronic information, print it on to paper and then send it over phone lines to be filed and transcribed electronically on the other end. But this is evidence of our "inherited architecture" problems in health care. We can't all get on the same page.
Some people adopted EMRs early, even designing their own customized portals. Problems with different systems (both health and IT ones) led to sharing problems. With the migration of most big health systems to EPIC, maybe this will be smoother.
But...the issues I've had are with the little guys. The independent therapy practice is not going to go EPIC. Just like my OB practice just faxed all my paper records to the hospital and they PDF'd them but couldn't search them. All the paperwork for kids' health at schools is on paper back and forth between home and school, then put in the computer there. These little glitches mean that there are redundancies and gaps.
We are stuck in the era of bumpy roads with EMRs -- they should be making things go faster, smoother and more directly to the right places. But, sometimes it rains and we're stuck in the mud. I finally delivered the paperwork to the pediatrician on Friday. I held it in my hand the whole time so I wouldn't forget. I would have been so mad if I left without giving it to them. But I also would have been so happy to have sent it to them via email in April!
I just found some notes from a great speech from Dr. Angeline Godwin, President of Patrick Henry Community College about teaching entrepreneurship (which is hard to do!)
Here's 5 questions to ask yourself, and a few comments from me on how I started down the road to Entrepreneurville:
1. The Bird in the Hand: What do you have right now? When I started my business, I had very few concrete things. Luckily, I wasn't selling goods, I was selling my brain, my time and my experience. I had to get a new computer, business cards and a website -- and get out there! I had connections but I need projects. I had some freelance clients, but they weren't steady. I did not have any previous business experience, but I'd worked mainly for small, growing companies which taught me a few things (mostly, what to avoid!)
2. The Affordable Loss: What are you willing to lose? I was in a very stressful work situation that required a lot of hours and freelancing seemed to be a great option. I wish I could have had a better, more stepped transition but unfortunately it didn't work out that way. So, I entered entrepreneurship by jumping into the great unknown and growing wings on the way down. Depending on what day it was, I was confident or disconsolate. Some of the uncertainty was balanced by less stress and more freedom -- but it's also incredibly hard to shake the feeling that you could ALWAYS be doing more.
3. The Crazy Quilt: Who do you know? (who isn't like you...) I made lots of lists. People i knew locally, people from previous jobs in Cleveland, people I'd met at conferences and through work over the years. It's amazing how many people you collect -- and once I was focused on health care, it was interesting to see who I knew who might hire me that i had no work connection to. It's really a testament to ensuring you have a good all-around reputation. Many of my clients have come to me in unusual ways, through friends and colleagues and I appreciate that tremendously.
4. Lemon to Lemonade: What will you do when, not if, something goes wrong? I spent a lot of time worrying about things going wrong, even when they were going right. Being an entrepreneur will make you hyper-vigilant. It's important to have a Plan B and a Plan Z (as LinkedIn founder Reid Hoffman coined) as well as just plain faith in yourself. If you are good at what you do, if you are reliable and deliver as promised, if you can adapt to changing situations -- why can't you count on that in the future?
5. Piloting the Plane: What do you control? Well, you can only control so much, and worrying will make you nuts. So, that's what insurance is for. I got some good advice in the beginning about setting aside half of every paycheck, and to get business insurance -- not just for liability, but for errors and omissions and other business issues that might be out of your control. You can create processes and set up policies as you learn, too, so you don't make the same mistakes twice.
Entrepreneurship isn't for sissies. But it can be tremendously rewarding and the freedom can make you never want to work for anyone else again. I love what I do -- and I love that I have created my business to serve my clients in a way that works for them, too. Dr. Godwin also said "Be Aggressively Positive" and I think that's great advice. Believe you can do it. Make a plan to do it, and get to it!
There's a very famous family story where I made my husband go to the urgent care with me because I thought I had strep throat and if I did, he must too. It all started when one of my co-worker's sons had strep and she was telling me about it. I woke up the next day with a scratchy throat and knew it was time to go. In my family, both of my parents worked at hospitals and we were fairly quick to be seen if it appeared to "be something." My husband's family, on the other hand, not so much. These cultural influences play out as adults, as we try to make our own choices. I convinced him that we needed to go to the urgent care. We each got that awful gag-inducing swap and...he didn't have strep. Neither did I. He thought that was a wasted trip, and was very embarrassed that he'd gone to the doctor when he wasn't sick.
But wait. Let me make the case for going to the doctor when you aren't sick. As a person who works in health care now, raised by people who had easy access to professional health care -- I'm shocked by the number of people who just don't want to or can't access health care. This means that they wait and see as their main method of dealing with health issues, and when they see that it's not getting better, they head to the drug store. Not to pick up a prescription called in to their doctor, but to browse the over-the-counter aisles to see if anything matches their symptoms. (Here's a great article from Altarum about lower income people's health habits.)
With increased health care access through insurance, these habits are still hard to break. Many people want to "save" going to the doctor for when they really need it. But here are three reasons to go now:
1. Build a relationship with your doctor and talk about your current health. How do you feel? What could you be doing better? What advice does the doctor have for you? Are you due for any screenings?
2. Think about your health. If you are avoiding the doctor because you think she's just going to tell you to lose weight -- think about that. What are your obstacles in losing weight? How do you think it's affecting your health? What are your goals, for your health and your life?
3. Get your vitals taken. These data points help provide a baseline for the future, when your doctor might notice a spike in your lab results, your blood pressure or your weight. These things can help catch serious problems sooner (when they might be solved more easily) but they can't catch anything if you don't go in!
In short, don't be embarrassed to go in for a check up, or just to check in about your health questions. Your health is an important part of your life, and these maintenance appointments can help in the long run. As for my husband, he is still more doctor resistant than I am, but he's getting better. My work is not clinical, it's patient experience and patient-centered qualitative work -- so I consider every encounter a learning experience. Try to schedule an appointment when you don't need it so you can improve your experience when you do. I try to schedule an annual check-up near my birthday as a kind of self-care, and my very smart PCP always makes me tell him what's on my mind so we can work together on it. Try it!
(Originally published on LinkedIn June 13, 2016)
After a lunch-and-learn about branding, and a "red paper" from SPM Marketing, I'm seeing an intersection of the ideas. Hospital marketing can learn so much from marketing in general, in how they reach their audience, and the ways they do it effectively. BUT, and this is big: people don't want to go to the hospital. (I want to buy some Sugar lip gloss and a Dyson vacuum cleaner, to name two ads that reached me today.) But still, you are marketing to them in many of the same ways: online, on billboards, mobile ads and magazine spreads with friendly yet competent-looking doctors, and they still don't want your product!
That's why I think that branding is the most valuable tactic. Because when they do needto go to the hospital, it will be the sum total of all their impressions about your facility, doctors, emergency room and staff that tips it one way or the other (your competitor's nearby hospital.) In his fantastic book, "Joe Public Doesn't Care About Your Hospital,"author Chris Bevolo gets it. Being a marketer in this space is hard. Everyone thinks they know what patients need.
I am a big believer in asking patients what they need. And in general, that works for doctor's office and specialty care, and maybe even lifelong health care like skilled nursing and rehabilitation. In those cases, you may want to use some marketing tactics used in other industries. But for emergency room care, it's an emotional decision. That means branding needs to appeal to our deep need for life-saving; our hope that we'll get the smartest doctors and the most compassion nurses. In surgical care, they may have more time to make the decision, but it may also be an emotional choice based on what you've built your brand on.
Health care is essential. That doesn't mean it doesn't need to be marketed, but it must be marketed differently than our earbuds, lip gloss, paper towels and vacuum cleaners.
(Originally published on Linked In March 16, 2016)
Right now I've got three streams of work projects where food is part of the conversation. Food allergies, obesity and oral health -- all of which relate to what you can eat, what you should eat and what you cannot eat. I think in the health care field, we tend to overlook how hard it is to change social food patterns.
Here's an example -- in an article called Social Consequences of Food Allergy, Catharine Alvarez mentions a recent study in Pediatrics about Bullying of Kids with Food Allergy. She mentions that she was surprised by people's resistance to accommodating her kids' food allergy restrictions. What it seems to come down to is deep social mores that if you reject food that's offered to you, you are rejecting the person offering it. There is symbolic social function in shared meals, and the avoidance of sharing food, even because of a serious medical condition is not easily accepted.
For obesity, there are similar issues. Control of one's diet, although necessary, can be difficult because the reality is that we don't eat in isolation. We eat with our families, we eat at work, we go to restaurants together, we share celebratory meals and meals at community events. It's never a solo event, and if it must be, it makes it difficult to sustain. The person unpacking their individual containers during the lunch hour is often seen as sad, while the people who join in the Friday lunch bunch are seen as good company.
In a meeting with a speech pathologist this week, she mentioned how many of her patients have issues with swallowing -- and how being restricted to soft foods like applesauce and mashed potatoes is demoralizing for patients. They want to eat. They have favorite foods, comfort foods and they want to eat with their peers...whether they are 70 or 7.
I don't think there's any question that health care professionals know that food matters, but we often look at the calories, the protein or the processing instead of the environment. Food is social, and addressing who we eat with may be as important as what we eat in changing behaviors.
The Society for Healthcare Strategy, Marketing and Development (SHSMD), one of my favorite professional organizations, creates a great newsletter. This month, there's a piece by Cheryl Welch about brand journalism in health care. She offers a case study of brand journalism by Spectrum Health, a Michigan health system that deployed an internal reporting team to create content for their Health Beat digital news site. This is a fantastic example of how things have changed in media to where organizations need to "be their own publishers." A health system is a great ecosystem for illustrating this concept, because a lot happens in hospitals, doctor's offices and nursing homes every day. There are triumphs and setbacks. There are innovations and routines. But one of the challenges for public relations and marketing departments is that they don't hear about these stories until someone thinks to call them.
Internal reporting, AKA brand journalism, applies the same concepts that we learned in journalism school to tell human interest stories, in this case within the health context. These stories are not outright cheerleading for health system, but interesting, balanced and realistic stories of the people who are inside it, for whatever reason.
I see this as a major trend in marketing and PR and it can be done well. One of the reasons this is a great tactic is that as Welch says " traditional media is disintegrating, our consumers are more demanding and savvy and the tech landscape makes it downright cheap to reach large audiences."
One caveat, of course: if you are going to do it, do it well. Get a photographer. Create a style guide. Avoid astroturf (fake grass vs. real grass.) Take the time to do rounds and listen for the best stories. Have a plan for the brand voice to come through in the right. Hire people who know what they are doing. Get permissions. And then....go tell those stories!
I knew that infertility was a difficult topic to talk about, and I feel like I've had enough close friends go through it to know something -- but even I was surprised by the statistic that 61 percent of couples experiencing infertility don't tell people about it. That's a lot of people keeping their feelings to themselves -- and I won't say it's true for all of them, but it's hard on a marriage to do that. Blame, shame, anger and regret can be toxic to a relationship. Some people I interviewed said it made them stronger. Some people said it wasn't their marriage that suffered but friendships or relationships with their parents, siblings and in laws.
A century ago, infertility was not talked about like it is today -- but still I think we're not as open about it as we could be. There's a lot of undercurrents about sex, money and choices there and all of those are hard on their own. Oh, and some religion, too. It's fraught with time pressure, financial pressure and social pressure. I'm pleased to see people working on getting support, and the medical science is certainly improving.
But we've got a long way to go...there's a lot of issues here for individuals, couples and families. What do they want? How do they cope when it's extremely difficult? How do they deal with the ticking clock? And what can people who love them do to help?
Here's my story in The Health Journal, along with some tips on that: http://www.thehealthjournals.com/infertility/
My magazine editor asked me to write a story about infertility...maybe 900 words? And I said, "I just don't think it's possible to cover all the nuances in that amount." So, now it's a five part series! I thought I knew a lot about this, after moderating an online moms group for years, and seeing some of my best friends deal with miscarriages, blood disorders and long waits to finally get to announce their pregnancies. But after talking to many more people about this topic, I feel that it's still so much to absorb. First, people don't know many basics of fertility -- including the ages when fertility declines. I think this is a failure of our health education system that much of our information comes from celebrity magazines -- a number of people cited older actresses having babies as reassurance that they "had time."
Here's the story, and I hope you'll keep following along! http://www.thehealthjournals.com/fertile-ground/
I've heard people say that "medical school teaches you a new language" but that doctors don't learn how to translate that language well.
I attend a lot of meetings with physicians, and so I started putting words in my margins to look up. Things like "Baconian Induction" which to me, sounds like a cooking technique...but is actually part of the reasoning involved in scientific research, and "suboptimal hypertension control," which means your blood pressure is too high.
This is one of the reasons why health literacy is so important -- not just assessing it, but teaching doctors to remember that most people don't know these precise terms. There are good reasons why medical terms are so precise -- Where is it? What's happening? How often? Is it getting worse? What's the cause?
But for patients, it makes things more confusing, as they are trying to listen to the doctor, read his or her physical cues, and determine just how bad it is. The more we learn about medicine, the more we need to remember that people working outside the field need simple, topline information.
- What's is happening in my body?
- What should I do next?
- What will happen if I don't do that?
Health literacy sounds simple, but as we often say in writing: "If you can't explain something simply, you don't understand it well enough." (attributed to Albert Einstein)
So I'm collecting words on a roll of paper in my office, to remind myself to keep it simple.
Patients in need of urgent care (like in cancer care) want the new drugs to come out now. Doctors want to know whether the new protocol their being pressed to use actually works better than the old one. Parents want to know about long-term effects before they vaccinate their children with something new to market. These are part of the frustrations of the field of medicine -- which is always changing.
It's also a field with a lot of missteps -- the experiments of the past sometimes had horrible effects that ruined or took people's lives. The tragedies of William Halstead who, in the nineteenth century, disfigured women with radical mastectomies, or the forced Tuskeegee University syphilis experiments. These history lessons offer a caution for us.
The tension between these two imperatives appears to be a paradox: to bring lifesaving medical technology quickly to people who need it urgently, and to carefully evaluate these advances before offering them to large numbers of people.
This is why clinical trials are so important for medicine to move forward, safely and quickly. A recent SubjectWell poll found that 96 percent of people never participated in a clinical trial, and 50 percent had never even heard of one. The enhanced consent, participation rules and safeguards on clinical trials make it a better regulated field than ever before. Consider participating in research - so that we can do our best to have safer and faster results.
Often, the best illustrations are personal. Here's the stats on my spring break health care administration for my sons:
1 ENT appointment 9 pages of paperwork
1 Occupational Therapy evaluation 4 pages of paperwork
3 dental appointments 6 pages of paperwork
I filled it all out, with compliments from the front desk staff (I am a professional, after all.) But, I don't have great handwriting, and what are they going to do with it after I hand the clipboard back to them? They are going to type it in to their computers. Why can't I just type it into an online form? And, the dentist isn't new, it was just time for an update -- why couldn't they have read it to me and I confirm all the information, which hasn't changed one bit?
I know there's a lot of change in health care right now, but this is one of those process improvement issues that has long been adopted in other fields. In addition, the ENT's fax machine wasn't working so I went the pharmacy 3 times to pick up a medication that should have had a confirmed refill. Why is anyone faxing anything?
I'm sure this has something to do with privacy laws, and security of information, and of course that's important. But I suspect a large part of it is that no one has pressed for this kind of improvement yet, they are too busy with other concerns. While I'm sympathetic to that, I feel it's more evidence for what Walter Cronkite said "It's neither healthy, nor caring, nor a system." A healthy system contains up-to-date health information, a caring system makes it easy for people to share their information and a system means there's an efficient process to do so.
I'm optimistic about the requirement of electronic medical records, even though there's lots of grumbling about them. I think they can and will help patients and their care providers do better. First, let's get off the paper.