2015 Family Medicine Experience

Detailed Observation, Measurement Trump Trials Alone, Says Biotech Innovator

October 06, 2015 03:12 pm Richard Espinoza Denver –

Jamie Heywood, founder of the health website PatientsLikeMe.com, tells family physicians at the 2015 Family Medicine Experience that they're perfectly positioned to greatly expand medical research.

Jamie Heywood wants every patient encounter, every good and bad outcome of every treatment, to one day be part of a database that will guide physicians to the best treatments for individual patients.

It's a lofty goal, but it's one he wants to share with family physicians in particular, as he did Oct. 2 here during the final general session of the 2015 AAFP Family Medicine Experience. Success will require a unique combination of training and experience.

"I think that you, as a profession, might be at the center of that in a way that is really critical to achieving our shared goals in medicine," Heywood told his audience.

He is nudging medicine toward those goals with the website PatientsLikeMe.com,(www.patientslikeme.com) a community he developed after his brother Stephen was diagnosed with amyotrophic lateral sclerosis (ALS). It was a way for his brother to share his experiences with the disease and treatment to preserve every nugget of information that might one day help others, and Heywood sees it as a way to transform medical research.

Story Highlights
  • Jamie Heywood, founder of the health website PatientsLikeMe.com, told physicians at the 2015 Family Medicine Experience that recording the details of patients' experiences of illness can be more useful than simply conducting large-scale trials.
  • Heywood said family physicians are in the right position to turn patient narratives into data points that can be used to tailor treatments for specific individuals.
  • Transformation would require cooperation from patients, technology vendors and payers, all following the lead of primary care physicians.

"I don't want any more trials," he said. "I want to live in a world where we measure everyone with sufficient rigor that we can understand a disease in the real world, in clinical practice."

On the website, users describe their conditions in great detail. They can record treatments and side effects, as well as data points such as sleep, exercise, sex drive and mood every day over many years. Patients with insomnia, for example, report all the treatments they've tried -- ranging from prescribed drugs to melatonin and alcohol -- and which ones they've abandoned. Data come from people who want to tell others what they've learned regardless of whether they've found solutions.

"What it comes down to is this model is not about some study about ALS or some study about kidney cancer or a study about depression. It's about health being primary," Heywood told the family physicians before him. "What that means to me is that we have to think about life as more than just about a disease or a component, but as the integrated parts of our entire existence, which you all know and live every day in the way you relate to your patients."

The key is to take the narratives of patient experiences and turn them into data that can be shared widely. That would strengthen the relationship between patients and their primary care physicians.

"We're still outside medicine, but we don't want to be," Heywood said. "We want to be inside as a partner, where the patient brings data into your experience so that you can do better care and so your patients can tell you what's on their mind -- not just what they can remember in the waiting room, but the whole experience of their lives so you can solve the problem together."

Health is Primary, one year later

Journalist and documentary filmmaker T.R. Reid opened the final general session at the 2015 Family Medicine Experience (FMX) on Oct. 2 with an update on the Health is Primary(healthisprimary.org) campaign that launched at the 2014 AAFP Assembly (now FMX).

The campaign, which recently published a book titled Making Health Primary: How Family Medicine and Primary Care are Delivering on the Triple Aim,(healthisprimary.org) has been spreading the message that a greater emphasis on primary care will improve America's health and save money.

Reid talked about AAFP Speaker Javette Orgain, M.D., of Chicago, who recognized that hospice care was a logical extension of her practice to help her patients live the last phase of their lives with dignity. He mentioned a North Carolina family physician who made her own electronic health record system when she couldn't find a ready-made one that fit her small solo practice. He told a story about walking into a high-school basketball game with a family physician who was the only doctor for residents of three counties in Wyoming.

"I said to the doctor, 'By the way, which team are we cheering for?'" Reid said. "And he said, 'You know, I don't care. I delivered every player and every cheerleader on both sides!'"

These physicians are bright spots in the American medical landscape, but Reid said that landscape doesn't look like it should. Other wealthy democratic countries deliver better health care more economically by maintaining a ratio of about two primary care physicians to every subspecialist.

"I think what we've done with our Health is Primary campaign is shown Americans that we do have this ratio upside-down," Reid said. "If we put more focus on primary care, if we can convince more of our medical students to go into primary care, then we, too, will get what other countries have gotten: a very high quality of care at a reasonable cost.

"I think we've shown that because we've demonstrated around the country that health is primary."

Solving those problems means answering seven questions for each patient:

  • What is this thing I have?
  • What will it do to me?
  • Am I crazy or alone?
  • What might help me get better?
  • What might make me worse?
  • What might help me live with it?
  • How do I live well with my illness?

Heywood wants physicians to have a way to share the answers to those questions -- in concert with as many details as possible about each patient -- so the answers can later be used to inform patients with the same details.

"I want you to imagine having this in your hands when you're in the clinic, knowing for you or your patient with that cancer all the choices that you have -- everything, including doing nothing -- and what happened to all those people who made those choices," Heywood said. "It wouldn't be about cancer or ALS or heart disease. It would be about your life. It would be about living well."

The information Heywood envisions may be directly available to patients, but it wouldn't be of much use to them alone.

"There will be this cloud of data on the right and there will be these families on the left who don't know how to use it, and in between there will be someone," Heywood said, calling up a slide that sparked a long, loud round of cheering. Bridging that gap between patients and data in the image was a family physician above a catchphrase that ran through the entire Family Medicine Experience last week: "Freaking Awesome is the job description!"

But Heywood understands the issues of time, competition and compensation that already weigh on family physicians. He knows his idea will work only as a broad partnership with a strong leader. Patients should record much of their own data. Electronic health records must cooperate. Payers will have to compensate physicians for the expertise that brings it all together. It would be a complex transformation. That's why Heywood is looking for leadership from family physicians, who know better than most the importance of making health primary.

"The system will have to converge around caring about value, which is outcomes that patients care about," Heywood said. "That means this network of insanity we work in is going to have to rewire itself. You're at the center of figuring out this navigation."

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Additional Resources
Storify: 2015 AAFP FMX: Day Four(storify.com)

Storify: 2015 AAFP FMX: Day Three(storify.com)

Storify: 2015 AAFP FMX: Day Two(storify.com)

Storify: 2015 AAFP FMX: Day One(storify.com)

Storify: 2015 Congress of Delegates: Day Three(storify.com)

Storify: 2015 Congress of Delegates: Day Two(storify.com)

Storify: 2015 Congress of Delegates: Day One(storify.com)