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I wrote elsewhere: Making the most of your next doctor’s visit — Better Humans — Medium

Making the most of your next doctor’s visit Learn tips from ePatients about ways to hack you visit for better healthcare and a better relationship with your doctor.If you are lucky enough to be fairly healthy, then you may only go to the doctor once a year. Making the most out of your annual physical, or a trip to the doctor can be challenging. There is an emerging trend, known as ePatients, who are empowered, engaged and experts. By learning some of ePatient techniques, you too can improve your help and your relationship with your healthcare providers. Even if your health needs require more frequent visits, there are still some tips and tricks to make sure your questions are answered and your needs met.

via Making the most of your next doctor’s visit — Better Humans — Medium.

Patient Designed Care or Doctors 2.0 & You redux

NOTE: This post is intended as a companion post to the session recap from Doctors 2.0 & You here. Untitled

I recently published a recap of Doctors 2.0 2013. I’m no Bob Woodward, but I tried to take a neutral observer role in relating the content of the panel. When I asked for feedback, my friend Liza suggested my personal passion around the topic was missing.

challenge accepted

In early 2013 I wrote to conference organizer Denise Silber and suggested a panel discussion around patient-designed care. It was a nascent idea then, largely still is.

I keep telling this running joke (and it keeps flopping. Note to self…): there’s probably a German word for that concept of once you understand an idea, its hard to imagine a time when you didn’t think that way, and it probably has 7 syllables.

Yeah, not that funny, is it? But the point is still true. The term patient-designed care came out of the first Medicine X IDEO Patient Design Challenge. Through Stanford’s Medicine X program, about 40 conference goers spent a day collaborating with ePatients and IDEO designers. I was lucky enough to observe. As the group was wrapping for the day, one of the designers remarked:

"I think this is the first time we’ve had the people we design for participate in a design challenge. We hear a lot about patient-centered care…” one designer started, “but that’s kind of a hollow phrase. What we discovered today was something new: Patient-designed care”.

The idea has grown, and is still pretty simple. Involve patients in designing anything affecting them. It might be a process, or tool, or space, or service offering, or strategy. Whatever it is, make sure there are patients on the committee.

How could it be any other way?

Regrettably this is still a pretty novel idea to the healthcare industry. I’m as guilty as anyone. I can think of dozens of projects during my time working in hospitals where we set out to do patient-centered things. We had the best intentions. Let’s make this bill more patient friendly… or Let’s add patient-centered training to our new employee orientation.

That kind of work, despite noblest intentions, is inherently based on assumptions. We made assumptions about what patients would want. They’ll love this furniture… and If I got this bill, I’d want it to say….. Don’t get me wrong, that’s not a bad start. It’s still an empathic approach. But why didn’t we involve patients, asking them about their experiences and to share their suggestions?

It’s time to start.

I’ve been using the phrase patient-designed care for almost a year now. I’ve also been trying to put it into practice. For example, In 2012 I was still in an operations administration role in a hospital. When it was time to schedule an off-site team meeting, I invited a former patient to come speak to our group and participate in the meeting. I met the patient when she came to my office to voice a complaint one day. She went on to become a strong proponent of our department.

In my role helping lead a start-up focused on staff and patient experience, we’ve included ePatients in all of our project proposals. We sneak them in as experts consultants, or sometimes directly identified as ePatient experts.

On a personal level, I count many ePatients among my personal board of advisors. (How fun is that term? You should have a personal board of advisors too, if you don’t already.) When I’m stumped and need to bounce ideas around, I call on my friends. When I’m excited and need someone to share with, or poke holes in an idea, I call on my friends.

Here’s the bottom line: I cannot, anymore, imagine doing anything in healthcare which affects patients without involving patients. And that’s the idea I wanted to explore at Doctors 2.0 this year.

My hope for the panel was an honest conversation involving ePatients. I knew some of my Medicine X friends would understand the term. And others, despite doing participatory design work, may not know it yet. I wanted us to get representatives from those groups together.

Largely, I think we pulled that off. The discussion was made richer and more well rounded by our moderator, Michael Seres. Michael is an ePatient - sometimes he prefers iPatient - who takes an active role in designing his care plan. Liza Bernstein, a student of product design, understands the concept inherently. She sees how patients can play an active role in the design of processes and things affecting patients. Kathy Apostilidis is using her patient-acquired expertise to participate in designing European policies.

What’s next?

Maybe we need to find that german word I jokingly alluded to earlier. It’s hard to convey in a talk or panel discussion something so profound (and yet so simple). From my perspective, the next big hurdle is getting healthcare provider organizations (hospital, health systems, clinics, etc) to really embrace this concept. I’m unsure if we need to increase awareness, or reduce fears, or facilitate the formation of formal ePatient hospital advisors.

Hospitals have focus groups and patient advisory boards today. Those are admirable starts. But doesn’t it seem silly to have a meeting about improving the experience of a department or facility without including the people who have been through as patients? It’d be like going to a restaurant where the chef assumes what you want to eat without asking.

Panels like ours help start the conversation. And they broaden it. While I’m focused on integrating patients in hospital process and service design (strategy), others are focused on policy, or research or treatment plans. We need to have these conversations and I’m really glad Doctors 2.0 & You and Medicine X are among the first programs to host these dialogues.

Doctors 2.0 & You - Patient Designed Care Recap

If there is a universal language, its words are human feelings and its sentences are shared experiences. Healthcare, the state of being a patient or caring for someone who is a patient, is surely part of that universal language. At some point, each of us will have someone else put their hands on us with helpful, healing intent. Some are lucky enough to have skilled hands they can use deliver care to someone in need. This happens everywhere. It transcends language. So, it was not a surprise when Liza Bernstein told me, during a break at Doctors 2.0 & You, she had immediately felt a bond with other patients from around the world, at the conference.

Doctors 2.0 & You is a conference, anchored in Paris, focuses on future-facing healthcare trends such as mHealth, HCSM and participatory medicine. The conference is an interesting juxtaposition of the setting’s medieval-styled center of Paris’s CIUP and modern healthcare innovations. Perhaps that describes all of Europe.


On the first day of the conference, I had the fortune of participating in a panel discussion titled patient designed care. The wording was carefully chosen. We wanted to imply that the next logical step in the evolution of patient-centered care is one which patients will participate in developing.

The Panel

Traditionally, throughout the Western world it seems, healthcare has been delivered paternalistically —a top-down, assumptive approach. We’ve only recently begun using the term patient-centered care to refer to care planning, environments and processes where the patient is at the center. Our panel wanted to share some of the avant-garde trends each of us is seeing and what they portend for patient-designed care.

Meet the panelists

  • Liza Bernstein — Liza is South African by birth, American by residence and French through her education. Liza has a background in design, which she applies critically while thinking about her experience as a three time breast cancer survivor.
  • Kathy Apostilidis — Kathy is from Greece where she participates in many European healthcare policy endeavors. Kathy is also a cancer survivor and a passionate advocate for participatory medicine.
  • Nick Dawson — I live in Richmond, Virginia, USA. My background and education center around hospital administration, specifically finance and strategy.
  • Michael Seres Moderator — Michael, from just north of London, is the 11th person in the UK to receive a bowl transplant. Starting with his blog, he has developed a strong social media presence including connections with his doctors and clinical care team.

What is patient designed care and how is each person advancing it?



Liza spoke about going from being overwhelmed by the healthcare system, "gobbled up by the machine," in her words. As a patient, she had the medical problem, but not a lot of insight into how the medical process would unfold. That led her to think about how she might hack the system to her advantage. 

Liza applied design-thinking to her patient experience. Her goal was to find ways to take back power and choice in places where she felt she had lost both.

After Isolation, Liza says she moved to global engagement: "Twitter and Hashtags became my Gateway Drugs; I found my people, my purpose".



Kathy spoke about her experiences as a patient in Greece. When she discovered her physicians were not using electronic medical records, she began to take her own notes.

I made my own medical record, which I stored on my computer.

Kathy went on to discuss her passion for policies which help move away from a paternalistic system to a participatory one.



I began by sharing that I don’t identify as an ePatient myself. But my career has been profoundly shaped and influenced by active, engaged patients.

Early HCSM experiences, like fielding patient complaints on twitter, exposed me to ePatients. Those experiences helped move me from a place of designing healthcare services and offerings by assumption to a place of designing though participation.



Michael shared his own experiences while directing the panel as its moderator. For Michael, access to his care team via social media and texting allows him to participate in care planning from anywhere.

What is your vision for the future


Liza spoke about the need to move away from an approach which pays lip service to patient experience, without providing meaningful impact. To Liza, including patients in the design process would help uncover those areas for deeper impact.


Kathy addressed her vision for a more patient-centered European care system. For Kathy, an ideal system would not only exchange data effortlessly, it would allow patients to see and contribute to their own records. We need policies which support this too.


I’ve been a broken record lately. 2013 is the year of the ePatient. That’s my line. We’re starting to see ePatients involved in the design of care services, care plans and healthcare delivery.

Once someone gets exposed to the idea of including expert patients in the design of healthcare processes and services, its very hard to imagine how it could be any other way.

Conferences like Doctors 2.0 & You and Stanford’s Medicine X are leading the pack with their patients included strategy.

Elsewhere advisory firms, like the one I work for, include ePatients in the design and delivery of work we do for healthcare clients.

From a policy perspective, regulatory and advisory boards like PCORI are promoting and funding patient-identified research efforts.

NOTE: a more personal, objective view of my thoughts on patient-designed care can be found in this companion post.


Michael helped close the panel by reiterating that his success with his transplant team can serve as a model, anywhere.

And what a fantastic model it is!

Announcing the First Medicine X ePatient Q&A

Post event updateIf you are here, you should really be here, on the Medicine X site.

But, since you are here, you should consider following this link to apply for a 2013 ePatient scholarship. Who should apply? Anyone who has ever gone online or sought out a community to feel more empowered, engaged, educated, or supported. Hint: you.

You can find the video of the panel on the Medicine X YouTube page here.

March 3/6 Update

Watch the live stream on Stanford Medicine X's YouTube Channel, or on this page (the video will appear when the Q&A is live at 9p ET/ 6p PT.


Follow and participate in the twitter chat on Tweetchat, or by searching for and adding #MedXeP to your tweets.



What happens when Stanford brings together leading patients, researchers, doctors and silicon valley minds? Join some of 2012’s Medicine X ePatient scholars for a live Google Hangout and Tweet Chat to find out.

On March 6th, 2013, Chris Snider, 2012 ePatient Scholar and host of the Just Talking podcast, will moderate a panel discussion and live chat. The conversation will take place live in a google hangout and on twitter.

The goal of the conversation is to peel back the curtain on the Medicine X ePatient program. What are ePatients, who should apply, how does the application process work? What is it like to attend? How can one manage health concerns while at the conference? And, if you have questions of your own, the panel will be glad to address them.

The panel will also discuss a new track, being launched at Medicine X 2013: the Leadership Track.

The Leadership Track provides a unique opportunity for ePatients to attend Stanford Medicine X and further develop the skills, knowledge and experience necessary to become the next generation of ePatient leaders.

Meet the Panelists

The Details

What: Medicine X ePatient Q&A

Where: Google Hangout & Tweet Chat Google Hangout - you can view the hangout live on the Medicine X YouTube channel. NOTE: viewers will not be on camera, only the panelists will be shown (so it’s ok to show up in your PJs).

Tweet Chat: Simply search for and append #MedXeP to tweets. Alternatively, you can use a tweet chat service like

When March 6th 2013 at 9p–10p ET / 6p–7p PT

Then what? You apply to the Medicine X 2013 ePatient program!

From elsewhere: Participatory medicine to fight misconceptions about disease

Beryl Benderly, writing for Kaiser Health News and NPR’s Shots blog, tackles an important topic: misconceptions from providers about disease. In this case, Benderly writes about sickle cell.

There’s a lesson to be learned in this story for providers. And, is often the case, it is one of participatory medicine.

Patients suffering recurrent episodes know what works for their pain, but some doctors and nurses take that knowledge a sign of addiction. Patients with sickle cell pain wait an average of 30 minutes longer for pain medication than people with other extremely painful conditions, such as kidney stones, Tanabe’s research shows.

Patients know what works for their pain. That’s pretty simple. The painful part, aside from the actual pain, is the stigma so many patients have to battle to get the treatment they know to be effective.

One has to imagine, in a world where providers embrace patients as part of the care planning team, trust also increases.

Source: NPR Shots: Fighting Misconceptions About Sickle Cell Disease In The ER