Tag Archives: patient-provider

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.

Million Veteran March Toward Participatory Medicine – VA OpenNotes

This past weekend, the Veterans Health Administration kept their promise of shared health data — substantially expanding health record information available to patients through the VA Blue Button in the personal health record. About 1 million patients can get their whole record via VA Blue Button.

Now, My HealtheVet PHR users can get all test results, from labs to radiology to pathology. Pathology! They can download and print providers’ clinical notes. Notes! It’s not real time, but it’s Real Big. Notes and results can be seen after 7 days. Pathology at 14 days.

VA Blue Button

As a clinical champion of this effort, I field questions and concerns. Angst is from mental health providers, with concerns about patients seeing their written assessments. Some believe it may negatively affect clinician-patient therapeutic relationships. I try to point out that (a) patients already have legal access to these notes, (b) VA opened records to >7000 patients for 10 years and not much happened (except people got empowered), and (c) research shows more benefit than expected.

We don’t have all the answers, and still have a lot to learn about this. But now there’s one very large place to learn from…

What do you think? How will patients and clinicians benefit? Will there be downsides? What about health systems, what will change? Let me know.

Additional comments posted on Society for Participatory Medicine blog.

Note: this post does not represent any organization or agency

Calling all patient advocates: Patient Centered Outcomes Research Institute needs your feedback

Patients: Your Researcher Will See You Now!

The Patient Centered Outcomes Research Institute (PCORI) is soliciting input about patient-centered outcomes research. Patient Voices Needed Now!

PCORI is an independent, non-profit established by Congress through the 2010 Patient Protection and Affordable Care Act. Its mission is to: help people make informed health care decisions by producing and promoting high integrity, evidence-based information – that comes from research guided by patients, caregivers and the broader health care community.

The legislation creating this group, governed by a 21-member Board, is fascinating. Patient advocates must be part of the process: “For identifying research priorities, they shall take into account…a number of factors including variations and health disparities, the potential for new evidence to improve patient health, well-being, and the quality of care…as well as patient needs, outcomes, and preferences, the relevance to patients and clinicians in making informed health decisions…..

This is enlightenment in medical research.

All funded studies will have a strong orientation to the patient perspective and all will have patients involved in the development of the research, its governance and oversight, and its dissemination strategy.

While PCORI touts the Patient Voice, they will be hard pressed to ensure there is rigorous patient contribution. Jessie Gruman’s Prepared Patient Forum post Getting the Patient’s Perspective in Research: Will PCORI Deliver on its Promise? nicely describes the effort it will take to get it right. As a physician-researcher passionate about Participatory Medicine, I agree with her that scientists won’t use patient-designed methods unless they’re forced to, and that patient advocates will find researcher jargon hard to comprehend. One criteria in the PCORI framework (See Figure) says ‘Patient Centeredness.’ What does this mean? This vague term needs to be carefully defined, so there’s no room for varied interpretation.

The Draft National Priorities for Research and Research Agenda Version 1, is packed with great intentions. Patient advocates involved in governance, and reviewing research proposals. Studies on patient-centered treatment options and tools that help with informed decision-making. Focus on health system factors that improve shared decision-making. That’s easy – I’m totally in.

Are there lost opportunities? An imbalance of priorities? Yes, I think there are flaws. I’ll add my comments on their feedback site. Some of them here —

1. Research must use participatory design, with patients not just reviewing proposals but joined with researchers, all through each project.

2. Some research should study patient advocacy and participation — as an intervention to improve health system processes and as a means to achieve better patient experiences.

3. Research should include patient-designed measures. There isn’t much in the Draft Agenda that talks about patient contribution to measures. Patient centered does not mean Patient designed.

4. Research should include designing better health IT to collect data directly from patients. After all, if we’re trying to get to patient-centered outcomes….LET PATIENTS HELP! The Society for Participatory Medicine (SPM) and others should use PCORI as an opportunity to be loud & clear about this. This is disruptive medicine — so if PCORI doesn’t get it right from the start, it could be expected.

5. Re-distribute funding more to patient participation issues rather than comparative assessment. There is much science on what helps health outcomes, but less on how patients can be engaged using effective information-sharing and communication techniques. Only 10% of funding is allocated toward communication and only 20% for methodology advances. If we want to practice New Medicine, we’re going to need more than 30% of funding to do New Research.

6. Increase patient advocates on the Board. This isn’t about the Research agenda, but if they’re asking for feedback….it seems reasonable to provide this particular input. Why not more patient advocates? Maybe the bar was set too high? They didn’t look far enough? Not pay for people’s time? At the VERY LEAST, organizations such as SPM or Planetree or the Institute for Patient and Family Centered Care or the American Academy on Communication in Healthcare or the Center for Advancing Health should have a big seat at the big table.

So don’t walk, run, to PCORI’s agenda and shine some constructive light. You have until March 15th.