Tag Archives: secure email

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.

Patient portals, Blue Button & OpenNotes are the next generation of quality.

It’s been awhile since my last blog post. Summer does that. Particularly if there’s a winning combination of sun, beach, family, fresh corn (I heart Cape Cod). You get my drift. The right factors combine, giving you a great experience.

The same thing goes for digital tools. We intuitively know what’s needed. Easy login. Nice interface. Valuable functionality. Bringing the right information at your fingertips when you need it.

Making an application easy to use and beneficial doesn’t sound so hard, right? Yet why does it take so long for health care to figure this out?

I was asked to give a webinar on the topic of Patient Portals for Maine’s HealthInfoNet last week. I focused on the combination of features that bring the most value – in other words, what people need (based on what they use) and how positive change can happen – based on evidence and experience. We have a rapidly expanding literature about this information, and this data needs bright lights shining on it, firing it up.

I did a back of the envelope summary of some evidence. Not a systematic or exhaustive synthesis, but my cumulative view of a continuously expanding bibliography of relevant papers and presentations.

Co-presenters included Steve Bien, a physician at Wilson Stream Family Practice, the first independent practice to use Maine’s health information exchange. As an early adopter, Steve touted the use of secure email, remarking that online communication not only meets patient needs but reduces workload and offers efficiency. Nice to hear that from a small practice.

Adding the patient voice to the panel was Ann Sullivan, advocate and HealthInfoNet Board member. She provided insightful, day-to-day experience of how eHealth tools add value by fitting into the patient workflow (life!) through convenience, access and helping with self-care.

Thanks to Gemma Cannon, Service Coordinator for Maine’s Regional Extension Center, for convening the group to focus on patient meaningful use!

Slides from the @hinfonet webinar are available from HealthInfoNet and on slideshare.

In Their Own Words: the Only Way to a 3-D Patient View

It’s the end of the year, and for my last post in 2010, I want to talk about patient narratives – and how important and transformative it is for people to contribute their own health information.

If you don’t know about physician and filmaker Gretchen Berland, MD, you should. I wasn’t aware of her extraordinary work before getting the news that she received the Esther Pohl Lovejoy Leadership Award for 2010 from Oregon Health & Science University. This award honors a graduate (OSHU ’96) who demonstrates exceptional leadership and service to the medical profession on a national or international level.

This is a remarkable woman. The day after receiving her second Emmy (for NOVA films) at the age of 28, she enrolled at OHSU and became a doctor. During her residency and then on faculty at Yale, her unique filmaker perspective found where healthcare falls short: gaining the patient perspective. In her words,

Institutions tend to define people in one dimension, and there is sometimes a discord between how the system sees them and how they see themselves.

Dr. Berland gave patients (troubled teens) a camera to tell their story – their way. She says “Looking at the footage they shot gave me three-dimensional insights into their lives.” She’s continued to make participant-filmed video, with profound results. She gained wide acclaim in the 2004 documentary, Rolling, which tells the stories of three people who use wheelchairs. The film was shown on PBS and garnered awards from the Film Society of New York and the Lake Placid Film Festival.

As a primary care provider, I often imagine learning more in 5 minutes with a video of a patient in their home than hours of interviews in an exam room. OK, it’s not practical and the privacy officer would have my head on a platter…but Dr. Berland knows it’s true.

So how do we get to 3-D? How do patients and families share information that has meaning and impact?

Here’s a start to get to a 3-Dimensional Journey to Participatory Medicine.

A “Patient Info” Dashboard with a picture, nickname, family/caregivers, preferences.
Secure email.
Secure email with attachments.
Shared progress notes.
Shared problem lists.
Shared care plans.
Patient-entered data.
PHR links to health-related social networking.
Video visits.

Have a healthy and happy New Year with your friends and loved ones,

Sue