Tag Archives: participatory medicine

HIMSS and HERS – On The Cusp Of Something Big

HIMSS 2014 just wrapped up in Orlando. My 4th HIMSS in 6 years, I found the usual: crowded, vendor centric, sterile massive location. Food was costly and not healthy. My feet hurt. Typical, right?

But there were also diamonds, too – real signs of great things emerging. Namely, more women, more patient & consumer focus, and maturing capabilities where new models of care will blossom. Here’s some thoughts..

HIMSS Holliday HIMSS and HERS


1. Women are in the Health IT House!
We’re hearing from, and following more women in #Health IT – and it’ll keep going. Artist, Patient Advocate & worldwide speaker Regina Holliday set up her easel at the Connected Patients and Families Center and said, “Why HIMSS? What about HERS?” Reggie always reminds us of who we are and where we need to go. Her painting is comical while it cuts to the chase!

Former Secretary and Senator Hillary Clinton gave a rousing plenary to a packed crowd, talking about her healthcare journey and boosting attendees’ confidence that the health IT field will help improve health care while making it easier for patients and families to have a better experience. I’m optimistic but worry about HIT adding costs, something she didn’t mention. I suspect most of us were surprised when she gave us insightful fireside comments on geopolitical events. She ended by reminding us that women have come along way, but work is far from done. She recently launched No Ceilings, a project to support full participation of women and girls in the 21st century.
HIMSS clinton
Many other women champions and thought leaders were at HIMSS14, too many to list. A few in the public sector include the VA’s Theresa Cullen, ONC’s Judy Murphy and Lygeia Ricciardi, and of course new National Coordinator Karen DeSalvo. In the private sector, women leaders such as Humetrix CEO Bettina Experton are fierce and visionary but way too scarce.

More to Go: We need more women leading HIT companies, on Boards and advisory teams. Men: Hilary Clinton said that everyone plays a role and that everyone benefits!

2. Patients and Caregivers pounded the HIMSS Runway.
The Connected Patients and Families Learning Gallery was incredible. In the vendor area was significant square footage, carpet, lounge chairs, a big screen and continuous presentations. Consumer Voice is still modest compared to Big Software, Big Hardware and Big Data…but it is getting watered! With HIMSS also announcing the Connected Patient Committee – participatory design is set to grow. HIMSS Senior Director Mary Grizkowitz has been a passionate leader driving Patient Voice and participatory medicine at HIMSS. Other champions include Kate Berry, Leslie Kelly-Hall, Kate Christensen, Laura Adams and so many others. 
HIMSS Connected Patient view

More to Go: Connected Patients & Families gets a central location inside the Vendor area, co-located with patient-facing tools. 

3. Data exchange is finally trickling down to the consumer. I spend time learning what people want from health care and thinking about solutions to meet these needs. Consumers, patients and families don’t necessarily say ‘I need a list of my meds and allergies’ but do say, ‘help me take care of myself, and don’t make it hard for me to get information.’ A big part of that is health record access – shared records. ePatient Dave DeBronkart gave a talk Let My Data Go! in the Interoperability tent == a very high visibility area at HIMSS. He adeptly advocated for Blue Button and OpenNotes. Way to go, Dave!

More to Go:
all I can say is, Move Over Moses – Let our data go (and be entered!)

There was so much information and chats at HIMSS (and HERS!) that it’ll take time to digest, review and follow-up. At least my feet are OK now, and I just had a salad for dinner. :-)

Regina Holiday’s slides can be found here.

Danny van Leeuwen and MaryAnne Sterling’s slides focused on Caregiver Contributions can be found here.

What part of Patient Centered Care do medical guilds not understand?

Update: Two days after the NY Times story, the American Board of OB/Gyn modified their rules allowing members to treat men for STDs and screen for anal cancer. That’s Patient Centered (and member centered)!

I try to stay positive. My dear colleague Ted Eytan says he’s “3/4 full” – I love that. Staying positive in health care can be a hard these days. Here’s an oxymoron for today: Patient-Centered Organized Medicine.

Patient centered they’re not, says the New York Times today, in Gynecologists Run Afoul of Panel When Patient Is Male, a story about Boston’s Dr. Elizabeth Stier. It seems that in her Gynecology practice she sees some men at high risk for anal cancer. She sees the condition to mirror cervical health in women, and she’s become a local expert and valuable resource to her largely low income male patients. But the OB/Gyn board drew a line and said if she treats men, she loses her specialty certification.

A quick look at the OB/Gyn Board website, and I wonder how much they know their members, or know the patients of their members. The Executive Team is all men. Of 15 Board of Directors, 10 are men. I’m not saying gynecologists must be women, but I wonder: how Patient Centered is this specialty organization? How participatory is their decision-making?

I’m reminded of a 2007 paper by Hal Sox, Medical professionalism and the parable of the craft guilds. He wrote about how important it is for medical societies (a contemporary version of craft guilds) need to put patients at a higher level than self-interested and adopt a broader code of professionalism, stating

While meeting the needs of individual patients, physicians are required to provide health care that is based on the wise and cost-effective management of limited clinical resources.

My understanding of Patient Centered is changing, coming to be more about equal footing and a balanced distribution of power. Speeches like the one Anna Quindlen gave at the American Association of Medical Colleges, AAMC, are extraordinary and illuminate rigid, problematic mindsets today. Quindlen, prize-winning author, shared her stories with med school deans and leaders about how health professionals seem to sometimes not know their patients – leading to poor quality and experiences. What is it about Patient Centered Care that medicine doesn’t get? The irony is ridiculous: we’re too busy taking care of patients. Appointments, schedules, electronic records, pagers, phone calls, faxes, secure emails, quality measurement, performance pay, and…and…

Her speech is only available until December 3rd, posted here. (posted about this on the Society of Participatory Medicine blog)

Whether it’s about learning more about individual patients’ values and needs, or the needs of the health professionals who work hard getting to know and care for their patients — it’s where we need to move. About that, I’m Positively 4/4 Full.

We Must Have Patients and Caregivers Shaping Medical Curriculum

Many years ago, I sat through 2 years of lectures in medical school. Then, 2 years in the hospital. Then residency and clinics, hospital wards and more wards. How patients were viewed was always the same. They were there to answer questions, put up with exams, a lot of testing and feeling poorly. Writing of notes was endless, as were lists of possible diagnoses, test ordering and treatments.

At no time, and in no venue, did anyone consider patient as teacher. It was never conveyed that ‘patients were the experts of their issues’.

Such a lost opportunity. Maybe, just maybe, healthcare is waking up.

Pt Educ Counsel
A wonderful paper in
Patient Education and Counseling, What parents want from emails with their pediatrician: Implications for teaching communication skills is well worth a careful read. I believe it’s an important step and signal for the future. It’s a great example of Participatory Design, having patients and caregivers contribute to improvement of the health care system.
Schiller et al.

Researchers and educators in Ann Arbor, led by author Jocelyn Schiller, asked parents to read and review secure email messages between parents and medical students during their pediatrics clinical rotation.

Pediatrics faculty created ‘simulated messages’, or hypothetical messages from parents of pediatric patients. The medical students were asked to reply to the secure emails. Parents were then asked to read and comment on the messages. Finally, the parents comments were compared to the assessments done by the Pediatrics faculty.

The results were not surprising, but have significant implications for teaching medical students (or any health professional trainee) about communication. Parents were pleased when students provided information in a clear manner, with specifics on what to expect or ‘next steps’. Parents, however, gave lower scores than faculty for students’ ability to show empathy or show respect. The authors state,

…there may be subtleties in expressing empathy and respect that are acceptable to faculty and medical students, but that communicate negative connotations to patients and parents. These differences may be exacerbated in written communication.

The researchers remark that patients and caregivers are an important stakeholder in curricular reform, offering a different perspective from health professionals that enhances communication skills education.

The paper is a key contribution to Participatory Medicine. Patient advocates and participatory clinicians see this as necessary direction — getting patient voice into medical training. This needs to go even further than what this study accomplished; parents and patients directly involved in educational sessions, not just giving feedback on paper. After reading this work, the services of patient advocates just got better defined.