Flying home from the first HIMSS Patient Engagement summit, I finished Atul Gawande’s book, Being Mortal. I found myself aggregating my thoughts on the conference and the book. They both highlighted how slowly medicine embraces change as we struggle to put patients at the center of the healthcare stage. My reflections revealed that as far as I’ve come, I’m still not there in many interactions with patients. It’s still difficult for me to be more than “Dr. Informative”, which is Dr. Gawande’s accurate portrayal of physicians who are uncomfortable with medicine’s previous paternalism but unsure how to unravel the patient’s goals. During the conference patient panel, Kym Martin, a patient experience expert and four-time cancer survivor, commented that health is not just about the disease process. Physicians, indeed healthcare as a system, must consider a holistic picture that includes financial status, relationships, family support, work issues, etc. Present provider and hospital goals seem to concentrate efforts on what what we, the system, identify as the patients’ goals. Those “should bes” in our eyes are often not the reality of a patient’s existence if all circumstances are taken into account. Dr. Gawande struggles to remember to ask the following of his patients: “What is your understanding of the situation and its outcome? What are your fears and what are your hopes? What are the trade-offs you are willing to make and not willing to make? And what is the course of action that best serves this understanding?” And while his book is concentrated on end of life decisions, isn’t this true for all our patient interactions? Then at 10,000 feet over Chicago it occurred to me–wait, this was what I was taught a million years ago in Family Practice residency–to understand the patient and all that individual has to deal with, not just the disease AND to guide that person through the tangle of the healthcare system. Now if someone will just tell me how to do that in the seven minutes I have with them…by
This morning an article caught my eye and then my imagination: The Dreaded Post-Visit Call. It describes a patient who becomes worried after getting a post-doctor-visit phone call. She doesn’t understand its purpose and calls her physician thinking something is terribly wrong. Apparently his healthcare system employs individuals to make these calls after every doctor visit to ensure “patient satisfaction” (THAT PHRASE!). At any rate, it got me thinking about the future of calls like this.
It is not outside of reality to envision other entities making post-visit calls. The doctor’s employer can use the data to determine bonuses. This call could be followed by a post-visit call from the patient’s insurer. These calls could collect data to be used to determine if an insurance company will continue to keep a particular physician in their network based on some sort of satisfaction algorithm. It’s not hard to imagine CMS (Center for Medicare Services) getting on board with this as well as private insurers. Maybe the federal government could get further involved to create a Patient Satisfaction Data Bank. That could be the patient’s third call. And since nothing seems to be private anymore, Healthgrades could make a post-visit call when a patient tweets or posts to Facebook that they were in Dr. Jone’s office. This would increase the number of individuals rating doctors and isn’t that a good thing? Or is it…Why Rating Your Doctor is Bad for Your Health?
Let’s get more anonymous individuals involved in patient’s care, ticking off boxes for corporate data gathering. Or maybe, healthcare systems could train and employ health coaches who do know the patient. Getting a phone call from someone who really cares if you understood what was said during the visit and that you know how to make changes to improve your health? The same person who scribed your visit maybe? This would also free up physicians from being distracted by a computer screen and help them make a better connection with their patients.
Wow–a real win-win for patient care and engagement!
(This post was originally posted on the Baptist Health Kentucky Blog)
In online healthcare forums, community boardrooms and hospital C-suites these days the conversation is centered on “patient engagement”. The problem is, our medical system is not set up for engaging patients and if you have the misfortune of needing treatment, ofttimes it is all about disease management as opposed to maintenance of health. There is even a Patient Advocate medical career, someone who helps patients with insurance billing, explaining difficult and complicated medical options for treatment, tracking medical records,etc. Fact is, the best patient advocate is the patient (or their immediate caregiver) themselves. But how does one approach a system with no cost transparency, poor internet accessibility of providers and medical records, hospitals more concerned about provider convenience or facility appearance than the effect their care has on patients. Frankly, it’s a mess. Things are changing for the better but it is a long time coming.
The redesign of care will occur as more patients push the system for it. Becoming your own advocate (or your family member’s advocate) is paramount to excellent care. There are many patient advocacy websites assisting individuals in this new roll–The Society for Participatory Medicine*, Inspire.com* and Healthunlocked.com* to name just a few. However, to start, you have to accept the idea that YOU are in charge of your health.
Personal patient advocacy begins by PUTTing yourself first:
Partnership begins the process of advocacy. It is foremost that the individuals you trust your health with are willing to be partners with you in the journey. You should never feel threatened or dismissed by a physician when you present your research during an office visit. You should expect to be questioned about where you found any medical information. There is much rumor and poorly researched, non-evidenced based poppycock in the media. In my practice I expect patients to understand as much about their disease states or their health as they are capable of. I expect them to bring questions from reputable sites like MayoClinic.com Cleveland Clinic or specialty sites like Inspire.com. People who passively accept my recommendations without understanding are not engaged and are less likely to live healthy lives.
Understanding means taking the time to find resources necessary to grasp how to be as healthy as possible wherever you are in life. If you have diabetes you should be an expert in the disease. There should be no one more involved in your healthcare than you are. In this day and age of information access, there is no excuse for patients not to deeply understand their own health issues.
Try to make lifestyle changes, using the understanding you have developed from research and the recommendations you have agreed upon with your partnering physician. This is not saying “OK I’ll lose weight” in the exam room then promptly forgetting about it until the next visit because you have no skin in the game. Try involves active movement toward healthy goals, putting systems in place that drive change whether that is utilizing apps like LoseIt or MyFitnessPal, joining a gym or putting aside time to plan meals every week. In the context of illness, it may mean monitoring your blood pressure and graphing it using online tools or paper, keeping a food diary or exercise journal. Which leads us to Tracking.
Tracking is multilevel. There is a huge self-tracking movement today utilizing tools like the Fitbit nd Nike’s Fuelband Diabetics track carb intake or blood sugar levels using smartphone apps. A pen and paper work just as well. But the other tracking imperative is keeping a Personal Health Record so that YOU know when your last tetanus shot was, what surgeries you’ve had and why you had them and most importantly, what medicines and supplements you take, their doses, and what you are taking them for.
Together we can build a healthcare system that works for every patient, every time. And this will happen when patients are PUTTing themselves first and insisting that providers, physicians, hospitals, ERs, etc. do the same.by
Brenda works as a nurse at the other big healthcare system in town. She is a bit of a stoic. During our 25+ year relationship there were times I thought she didn’t like me until I realized what a no-nonsense personality she possesses. Thus it was upsetting to see distress in her face and hear her frustrated tone as she said, “You’ve been my doctor a long time, but I have been told that I can only see doctors in our system for my visits to be covered on my insurance.”
This came as no surprise to me. Just a few weeks earlier our hospital president made the same announcement to our employees. It is infuriating to hear relationships destroyed with a flippant “We have good doctors here. There is no reason for our employees to see doctors in other systems.”
First of all, a 25-year relationship with someone makes for a damn good reason to continue to see them. And yes, we have great doctors in our system. But sometimes better talent is in another hospital. I want my patient to benefit from the best talent available. And sometimes a better physician with a bedside manner that engenders patient trust trumps a “best” physician. Trust goes a long way in helping patients heal.[1,2,3] Creating more silos for our patients is not the answer to improving care but in these days of tightening budgets regardless of how much “patient engagement” rhetoric is thrown about, the bottom line is what is most on the hearts and minds of the system CEOs.
As administration continues its attempt to be transparent, I may scream on hearing one more “faith-based platitude”. I do not believe that putting dollars before patient care is a religious value. On the competition’s side their mission statement urges quality health care in a manner that responds to the needs of the community and also honors a faith heritage. Regardless of the faith heritage, shattered trust is not a community need.
In the aforementioned meeting, our hospital president also stated that discussions to join with the competition for supply volume discounts were in process. How about negotiating the salvation of patient-doctor relationships with them as well? Systems can continue to insist on patients using the facilities where they work for testing and procedures but this strategy could encourage doctors, regardless of where they work, to continue to have privileges in BOTH systems. Then we have a win-win for patient employees, their doctors and the systems.
As hospital networks struggle to balance their budgets in this competitive marketplace, here is my prediction: healthcare systems will survive based on the level of care they give the patients they serve, not by destroying the trust that patients put into those systems and their physicians. As Karma will have it, what goes around, comes around. Or if you prefer, in your faith-based work culture: Proverbs 26:27 – Who so diggeth a pit shall fall therein: and he that rolleth a stone, it will return upon him.
1. Effective physician-patient communication and health outcomes: a review. Stewart, MA. CMAJ : Canadian Medical Association Journal. 1995 May 1; 152(9)1423 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1337906/
2. Better Physician-Patient Relationships Are Associated with Higher Reported Adherence to Antiretroviral Therapy in Patients with HIV Infection. John Schneider, MD, MPH. et al. J Gen Intern Med. 2004 November; 19(11): 1096–1103. doi: 10.1111/j.1525-1497.2004.30418.x http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1494791/
3. Assessing the effects of physician-patient interactions on the outcomes of chronic disease. Kaplan, SH, et al. Med Care. 1989 Mar;27(3 Suppl):S110-27. http://www.ncbi.nlm.nih.gov/pubmed/2646486
Sitting next to +Ronan Kavanagh in a nice French restaurant after the first day of the Doctors 2.0 conference, he commented, in his lovely Irish brogue, “You know, at our age we are not supposed to have the opportunity to make so many new friends. But look at this table, all brought together by a common bond.”
What great fortune, to be sharing dinner with six interesting people who I’d had the fortune to meet on Twitter during the last year. The cool thing was–they were every bit as awesome IRL (in real life) as they are on line. All of us share a passion for making the patient experience better using digital tools–gamification, the quantified self, video patient information, social media for physicians and patients, etc. And while I didn’t meet John Brownlee on Twitter, he was the other common bond amongst us; the CEO and founder of ClearMD who organized the meal.
The Doctors 2.0 conference brought doctors, patients and entrepreneurs together in an incredible setting, la Cité Universitaire:
My nose and sinuses feel like they are about to explode. I am moving into the third week of this and it’s getting old. At first I thought that my cold had morphed into allergies but now it is apparent that two viral loads in a row have slammed me, both affecting my upper respiratory tract. If a patient walked into my office as miserable as I am right now my advice would include a steroid dose pack to shrink the swelling, some decongestants, lots of fluid and rest. Since it has been going on for so long if the patient insisted I would probably toss an antibiotic in there as well though it is clear (to me) this is not a bacterial infection. I am using a multi-symptom nighttime OTC cocktail along with a topical antihistamine at night and a decongestant with a expectorant during the day. I have no fever and there is nothing to suggest a bacterial component.
Reflecting on my illness, it occurs to me that one of the reasons doctors are uncomfortable taking care of doctors is that we are the ultimate e-patient. We are participatory, we understand the underlying disease processes and we often waver between allowing the treating doctor to be in charge and taking charge. We want to be partners in our healthcare because we have the training for it and yet hesitate because that’s not the way it’s done. It brings to mind a moment in my first pregnancy (in eastern KY) when my nurse midwife told me to skip the hospital prenatal courses because I needed to be a patient, not a doctor, and the classes would thrust me into a difficult role in such a small community. I remember feeling relief and feeling good about “only” being a patient.
Those times when I have needed to be a patient my choices in physicians have assured me that I would be a partner in my healthcare decisions. Most doctors find taking care of other doctors, or their family members, challenging. This can be both self-inflicted and patient-generated. As patients become more engaged in their healthcare perhaps taking care of our own kind will become less anxiety-producing. We will feel confident that no one is “only a patient” because all patients will be partners if they so choose.