The Making of ePatient Dave and How the ePatient Revolution Will Change Healthcare Communication

 Some people say it’s easy to be a social media pundit. But not for Dave deBronkart.  His journey to the national healthcare social media pulpit was very nearly a fatal one.  A man in his 50s at the time, he was feeling a little tired in the evening.  He had lost a minor amount of weight, but otherwise, didn’t feel sick.  But his shoulder muscle was hurting him, so he went to the doctor.  That initial x-ray returned a diagnosis of rotator cuff issues…and a suspicious shadow on his lung.  Further tests revealed the lung tumor was aggressive and metastasized, meaning it had to have originated somewhere else.  That “somewhere else” for the cancer happened to be his kidneys…which had spread to his brain, femur, lungs and tongue.  With every internet search for advanced renal cancer, he saw the same words:  “prognosis is grim.”  That all changed, when, after days of searching, he found an online support group for patients like him.

There, he found other patients who gave him more detail and perspective about the emerging use of Interleukin, when and how it works, where the research supporting it could be found, and which doctors were using it effectively in his area.  He found the right doctor and treatment, which included Interleukin, surgical removal of the tumors, a new steel rod to replace his tumor-ridden femur, and chemo/radiation. He’s now cured of his cancer after being given only 24 weeks to live, and along the way, his online blogging, new book, innovative website and evangelizing on the importance of empowered patients has earned him the title of one of healthcare’s leading advocates.  He’s also a leader in the Society for Participatory Medicine, another loud and important voice that will hopefully help shape healthcare’s future.

But it’s not just his personal story that makes his message so powerful.  It is the wake up call he is delivering to the healthcare industry.  “Reimbursements are going down.  Healthcare costs are outstripping patient’s ability to pay their out-of-pocket costs. Incentives are getting rearranged.  The healthcare system as we know it is coming apart.  For it to work, we have to let patients help us pick up the pieces, and put together a whole new picture,” Dave said.

While most Americans believe their healthcare system is the best in the world, it is far from the most effective.  In fact, statistics published this summer in Medical News Today show that, in spite of a few small enclaves of good health in some select cities, the United States overall ranks 37th among the world’s nations in life expectancy. Yet we spend more on healthcare than any industrialized nation on earth.

While patients are often stymied by online paywalls and long delays in accessing published studies, there is an explosion of new and breaking medical news available to them. In a world where patients often have as much access to information and studies as doctors, Dave says it’s time we started looking at patients as partners, not merely the recipient of our products.  He had the following big ideas for improving the way we deal with patients, including:

Creating a New Patient Care  Profession— Dave thinks there should be a whole new kind of medical professional that coaches patients, and an MD shouldn’t be required.  This is someone who wouldn’t replace the physician, but would work as part of a traditional medical team, working with the patient to make sure they have access to the best, right information.  This includes steering them to online forums where they can get support, checking in to make sure they’re complying with their medicine and lifestyle treatment, and helping them get healthcare rewards.

Giving Patients Their Digital Health Data–By having and organizing his medical information, Dave was able to seek the help of referrals easily, identify patterns in his symptoms, and organize his thoughts for his doctor’s appointments.  He feels this should be easy and a right for every American.

Encouraging patients to share–Whether it is in national forums, or ones put out by hospitals, it makes sense for healthcare providers to provide a forum for patients to gain access to the latest breaking, curated news, and interact with each other.  Studies have shown that it improves a patient’s quality of life just to know there are others out there like them.  Online forums can play a big role in crowd-sourcing the best treatments, keeping patients informed of new treatments, and creating social pressure and support for treatment compliance.

Getting the right amount of the right information into patient’s hands--As a panel of patients spoke to us this afternoon on the subject of the e-Patient, they begged for more and better information from their healthcare providers, preferably broken down into easily digestible packages, so as to not overwhelm patients just starting treatment.  They have to be written in modules based on disease progression, so that patients don’t become distracted by looking at too much irrelevant information.  And they have to be written with clear, accessible, jargon-free writing. He encourages hospitals, particularly, to step out on Facebook, Twitter, You Tube and Flickr, for a start. The more solid, science-based information they can get, the more credibility doctors have with their patients.  And that’s always a good thing.  Maybe, just maybe, healthcare providers can start to see social media and its various platforms as more than just a toy, or a marketing bullhorn, but a real and growing way to change patient outcomes for the better.

(This post was authored by Susan Gosselin, Director of PR at Vest Advertising, Marketing & PR in Louisville, KY, a full service agency with a specialization in healthcare clients.  She met and interviewed Dave deBronkart while attending the Mayo Clinic Health Social Media Network Conference in October 2011.  Vest is a charter member of the organization.)