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.

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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

 

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

 

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.

Nick

 

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

 

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

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

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.

Nick

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

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!