Tag Archives: patient-entered data

Experiences with open notes are meaningful and profound, Part I. And started this blog.

This post is about Experiences. My experience. Patients’ experiences. And the birth of this blog. It’s the story about my own awakening about full transparency and sharing notes with patients. It’s also a post about an important research study I hope helps Give Patients Their Damn Data.

Patient access to their entire health record, now referred to as OpenNotes (huge nod to Tom Delbanco, Jan Walker and RWJF for driving such disruption!), isn’t common but needs to be. A few months ago, the VA opened up access to clinical notes and all test results through the Blue Button. Now there’s more evidence this needs to happen everywhere.

A few years back, I joined the Veterans Health Administration because they – like Kaiser and Group Health – were leading the way with personal health records (PHRs). As the VA ramped up their PHR, My HealtheVet, they were also winding down piloting of their 1st PHR prototype. Tested at 9 VA facilities, over 7,000 VA patients had access to most info in their chart: notes, discharge summaries, all test and imaging reports – pretty much the whole enchilada.

My boss and mentor, Paul Nichol, an internist at the Seattle VA and VHA Director of Medical Informatics, said, “We should study what patients think about reading clinical notes and seeing their full record.” also mentioning, “We have to take this national. All patients need this.” I’m a researcher and don’t shy away from evaluation. Yet my first reaction was, Why? I don’t have a problem with patients seeing test results, but I really don’t want to share notes that I write…

So I went to the literature to see what’s already known. There were some studies – not a lot – but enough to support the idea that opening notes had great value to patients and families. And plenty of evidence about push-back from doctors and clinicians. Guess I wasn’t alone.

The My HealtheVet Pilot was going off-line soon, and there wasn’t time to write a grant and get funding for a big study. So I solicited help from Nancy Press, an anthropologist at Oregon Health Science University, and recruited Portland VA patients who downloaded their records using the Pilot PHR. We developed questions for focus groups, such as ‘What did you look at? How did it help you? Were you confused? Harmed? How did that affect your clinic visits and relationship with your providers?’ We got great feedback from James Ralston, a well-known eHealth researcher at Group Health. I was lucky to have 2 qualitative researchers, Erin Schwartz and Anais Tuepker, join us to analyze the transcripts.

Here’s what the 1st focus group participants said: It was great to see notes. It was a communication tool. It helped remember things. It gave more insight into health issues. Some information in notes was surprising at first, but it was better to have it all, then to have part of it or none of it. Some of it was confusing, but they just Googled it. Some talked to their provider about notes, most didn’t. When asked (many times) if they experienced harm seeing their record, the answer was the same. NO.


After 1 focus group, my views became unsteady. After 2, they changed. After 5, they were upside down.

I was so moved by what I heard about patient and family caregiver experiences, I decided to start a blog. Not just about Open Notes, but about shared information, shared communication, shared decision-making and participatory care. Shared Health Data was born.

The research paper on VA patient experiences with full access to health record data and clinical notes comes out this week just came out in the Journal of Medical Internet Research. I’ll summarize our findings in Part II.

ONC panel on Patient Generated Data: make Meaningful Use a dynamic, two-way street

My son’s high school graduation trumped going to D.C. this week, so I couldn’t atend the Health Data Initiative Forum or ONC’s Patient Generated Data Public Forum.

Yesterday I was able to hear some presentation at the ONC panel. There’s a white paper by RTI and written testimony of the Patient Generated Data (PGD) speakers here.

Anyone pumped about PGD wants to change the culture of care AND disrupt electronic record design & development. I’ve written before about Data Generación! – the complement to sharing all data in the EHR….allowing direct contribution by patients & families. Shared Data that’s meaningful means information flows in both directions.

One of the best comments was by Nikolai Kirienko, Project Director at Crohnology.MD, a Project Design effort at the University of California, Berkeley:

We, the people providers call patients, most often navigate care by voice. We tell our stories in clinic, and at the bedside, in search of a cure for what ails us. Yet, we are not always heard.

Nikolai continued,

“Patients are a vital source of knowledge, not always included in the medical record. Yet, we have but minutes at the point of care to verbally transfer up a decade of experience and preferences for care….I am here to say to you today: please make meaningful use a dynamic, two-way street.”

ONC did a nice job at this early stage. Speakers gave examples of patients wanting to contribute and how it can be done. They talked about patient data competing with existing data, and needing to fit into clinical workflows. A variety of issues were discussed, including data overload, responsibility for data review, tagging data sources, data types put in the record, patient reported measurement, and more.

Some others speakers talked about the importance of using our electronic tools to raise the volume of the patient voice so that clinicians and teams can pay attention to it. Many focused on ‘how’ to get such attention…and while it will be a show-stopper if patient input is undervalued, or worse, ignored, it became clear to me that perhaps we need to focus more on the business case from the Patient & Family perspective – before we identify a Meaningful Use ‘minimal data set.’

Patti Brennan, Director of Project Health Design, underscored the need to expand the idea of PGD to improve the business of healthcare. We all await her grantees stories and findings 🙂

Prashila Dullabh, Program Area Director for Health IT at NORC, University of Chicago, testified how eager and able patients are to provide clinical information on their use of medications (the reality in med recon). She drew parallels between patient feedback and customer dispute resolution on eBay. Lovely.

Judy Hibbard, from the University of Oregon, talked about using patient-reported measures as an effective gauge of patients to inform the clinical relationship as well as to tailor using resources in novel ways.

Kathy Frisbee, director of the nascent Web & Mobile Solutions office of the Veterans Health Administration, spoke about VA’s desire to integrate PGD into its current HIT development, and commitment to work through challenges of standardization of data storage and exchange, algorithms for data review, and integrating into workflow. It’s been exciting to work with Kathy and others on this journey, as the VA is developing mobile apps for family caregivers, and prototyping its next generation of records.

While ONC is well versed in sailing into uncharted territory, I’m feeling that this is – finally – a start into a New World of Patient Contribution. I’m all in.

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.