Health records
The Green Button health data idea gains traction
There have been some great ideas in the healthcare field but none so potentially powerful as the “Green Button”. first discussed at HealthCamp SFBay the idea is to set up a universal button to allow patients to share their data.
Why? Because a main obstacle to developing good personal health software is that developers need real clinical data for test purposes.
Interestingly the UK Government is working hard on “MyData Charter” which also has implications on informed consent. Read Ctrl-Shift’s paper on the subject.
1) Its ‘mydata’ programme encourages companies to release data they hold about individuals back to them, so that they can use this data for their own purposes. This is the first major Government initiative, globally, towards a changed personal data consensus: personal data is a personal asset, and individuals should have the right and ability to manage and use this asset to pursue their own goals.
2) The Government programme is also the first official recognition that there is a market for decision-making services (or ‘choice tools’ in Government parlance) that operates independently of existing markets for products and services – the market for what we call Personal Information Management Services (PIMS).
We are definitely in favour of personal control of personal data. Lifetime Health Diary is built on the principle that the patient owns the data and can share it wherever s/he wishes. Having tools available that fit recognisable standards and security criteria will help us to fit our data standards into common use.
Let the data wars begin!
To PHR or not to PHR
According to the statistics in a previous post, only about 7 percent of the US population uses a Personal Health Record (PHR). The low adoption tells us that levels of patient empowerment and engagement are low, there is a lack of education about PHRs, and a lack of communication with the end-user about the benefits of using such a tool.
But let’s face it; we all live in a digital world, broadband connections are streaming across nations around the world, the level of penetration of smart phones is so high that predictions are for 1.4 billion smart phones by 2015 (that’s almost 1/3 of the world’s population!). We all read news, most of us use the internet, we are connecting with our friends through Facebook, we Twit, Digg, shop online, etc. Word of mouth is so powerful because we use these apps and tools if something new and exciting appears on the market – we definitely will twit about or ‘like’ it on Facebook, or tell our friends over the phone.
What this means for PHR vendors is that probably their products do not carry that required level of excitement and/or utility (whether usability, design, features, visible benefits, or some perks from usage) for ‘early adopters’ to start spreading the word about the product because they LOVE it. In the case of PHRs – chronic patients should be ideal early adopters. These patients are the ones who should embrace PHRs to make their life easier by executing daily health management and monitoring, better communication with care providers, storage of health data, etc. However, PHRs are not yet used extensively by these groups so obviously there is a problem with current PHRs.
Seems to me people do not need just another PHR, but more than that; a collaborative care tool, wellness, networking, goals, rewards, health and medication info, ease of use, beneficial features, privacy, lab tests and results automatically downloaded. Users are clever when it comes to adopting technology that helps them with some aspect of their life. if something adds value to daily routines — they will jump on the product!
And what’s the bet that we don’t end up calling it a “PHR” in the end…
Yours in health,
Hamish
Health should not be a burdensome task on our daily “to-do list”
A year ago I knew nothing about our healthcare (besides few facts such as having to co-pay $5 every time I visit my dentist and having to wait for my appointment for at least 1 hour before I see a nurse for 5 minutes and my physician for another 3 minutes). But look at me now: I read healthcare and HIT news daily (not that I understand 100% everything. Well… in my defense, our Healthcare system is too complicated and disconnected that it makes it difficult to digest all the current news), with the same frequency I visit patient advocate blogs, I twit recent news, I tell my friends about PHRs and EHRs (not that they understand what I am talking about. As other 93% of our population they are too busy with a daily routine, and thinking of taking another responsibility such as engaging in their own health makes them feel overwhelmed), I attend monthly Health 2.0 Meetups in NYC where tech savvy and passionate about healthcare people discuss current issues, present demos of new patient-centric tools and connect to each other; I also attended Health 2.0 Conference in SF in October (where I had a pleasure to meet even more people passionate about healthcare transformation, and where I got to see demos of even more patient-centric tools).
However, this is my experience. I probably would not be engaged in healthcare and my own health unless I gotten evolved in the company where I am at now. Look at my friends – they still do not understand what I am doing and why do they need having their health records available to them all the time wherever they are. (Yes, they like to use a few iPhone apps which help them track fitness and diet progress though). They just do not get it! And looking at the current statistics most of our population does not get it either (e.g. only 7% currently use PHRs).
What it tells me is this is a time to finally start rolling out campaigns directed on the patients (I purposely do not use “consumers”) to bring awareness, education, engagement and, finally empowerment. Health is local - so let’s start educate and talk to people at where they are at now, talk to them in their “language”, show the demos of available patient-centric tools to them, let people know that no doctors will help them to be healthier unless they make a decision themselves to do so. Health should not be a burdensome task on our daily “to-do list”. It should rather be an enjoyable part of our daily lives (taking in account all these cool HIT gadgets available our there, and, yes, people actually like cool gadgets – we just need to be aware of them) reducing the stress, time and money spent on the doctors, preventing preventable diseases and helping us create healthy, engaged and conscious population.
OpenNotes research into opening EMRs to patient viewing
- Image via Wikipedia
I was on a particularly stimulating Twitter Chat session today with the #HPM (Hospice and Palliative Medicine) group. During the session Christian Sinclair introduced the chat topic
Recent program called OpenNotes got some press. Patients can see their medical record. How should hospices approach this?
Katerina mentioned the project in one of her earliest posts back in July. Thus, just to remind OpenNotes is a “demonstration and evaluation project exploring what happens when the medical record becomes far more transparent than in the past.”
Now, from LHD’s point of view open-ness and transparency is a critical part of patient-centered medicine. The ability for a patient and her carers to choose whether or not to read the doctor’s medical notes is what matters. Technically the linking of computer systems with external email and in a secure environment may make rolling out a program like this expensive.
Fact: some people want to be more engaged with their health than others.
The Researchers elaborate further on their underlying hopes for the study
OpenNotes is a simple, but potentially disruptive intervention that aims to transform the patient-clinician relationship as it furthers both transparency and the democratization of health care. The “bottom line” evaluation of OpenNotes is straightforward: Will patients and doctors want to continue when the study period ends?
Some of the issues which this raises are
- should the doctor write in a different manner because the notes may be read by a layman
- will this raise the time doctors spend on documentation
- will this create greater engagement by the patient and her carers in the treatment
- can this new channel of communication ease the administrative burden on doctors
What will be interesting is whether there is any variation in the research findings from the three different hospitals selected for the study. I am glad that it’s planned to be a long term study running for over a year and the researchers are actively encouraging the public to contribute their views. The research methodology summary.
We found some bloggers writing about OpenNotes:
- Why OpenNotes and access to the medical chart is important (kevinmd.com)
- Should Patients Read the Doctor’s Notes? (New York Times)
- Conversation Continues Around OpenNotes – Let the Researchers Know What You Think (rwjfblogs.typepad.com)
- Open Notes Project – Right Thing or Wrong Question (ehealth.johnwsharp.com)
- Should Patients Read Doctors’ Notes? Wrong Question (Roni Zeiger, Google Health)
Better hospital hand-offs for patients with multi-med regimes
Last week I wrote about Hospital hand-offs and medical errors, and how they are a systemic problem in hospitals and that it is an area that needs to be improved.
It is a complex problem, a number of organizations are embarking on projects in attempts to solve the issue. There are various innovative strategies such as Project BOOST and Project RED (Re-Engineered Discharge), which respectively provide a comprehensive toolkit for handoffs and patient-centered interactions to learn about after-care plans following discharge.
Paul Levy, CEO of Beth Israel Deaconess Medical Center in Boston writes about a Senior Resident, Kelly Graham, who helped initiate three simple interventions that dramatically improved patient handoff outcomes.
Recently I met with the CEO from Mercy Hospital in Dunedin, who said that
a better tool for medication hand-offs would help during admissions as well as patient discharges. All too often now the “Hospital Reconciliation Tool” consists simply of patients bringing a bag with all the meds they are on
- we checked with Beth Israel Medical Center in New York, where it is also the same procedure. Conversations we have had with various clinicians indicates that to hope that all medications are all neatly noted down correctly and then made available for clinicians in the hospital to view whenever required is just that, a hope.
We hope we can provide a solution to at least the medicine reconciliation part of the equation soon with our new Med Optimization tool. It should work for hospital handoffs as well as community-based healthcare at pharmacies. If anyone working at a hospital would like to try out a better handoff tool for medication regimes, by all means drop us a line.
Yours in health,
Hamish
Our First Community Group Meeting! (Part 1: Introduction)
Yesterday, with help of Sue Russell from DCOSS, Ignite Consultants held a meeting under the theme: Healthy Community Enabled by Information: Social Innovation at Work. Representatives of nine different organisations attended. Despite very short notice they kindly came to share their ideas and feedback on what can be done to address some of the problems arising due to inefficient information management systems between patient, doctors, caregivers and other parties engaged in patient health management.
We started the meeting with everybody introducing themselves, I gave a short introduction followed by guest speaker Hamish MacDonald who presented his innovative technology, Lifetime Health Diary™
I met Hamish nearly one year ago, when running my Social Entrepreneurship Project. He approached me to tell me about the global mission of his company including the 5 billion plus of those who are the most health disadvantaged in the global community, including even in our communities such as the disabled, cultural minorities, people living with chronic conditions, the elderly, etc. who very often face significant challenges in obtaining adequate access and delivery of health services.
But it wasn’t till 2 months ago when he actually showed me what, together with his team, he managed to build and how the vision becomes reality. Intrigued, and seeing a huge potential in how this tool could help people with different disabilities, I took the idea to different organisations to see what they thought. The response was overwhelming.
Lifetime Health Diary™ is a secure, free, patient-owned, internet-based health diary for recording, monitoring and self-managing one’s health, as well practice health prevention. It captures and systemizes all data inputs into an easily understandable “Graphic Natural History” of your heath through lining up all your data by temporal correlation – which is a fancy way of saying your background lifestyle factors and life events are lined up by date alongside your clinical data. This allows your unique clinical story to be better understood by clinicians and caregivers that you personally invite by secure email link to view your health record.
During the meeting Hamish talked about his friend and business partner, Dr. Atsushi Matsunaga, the inventor of the software and a person very frustrated with the inability of the healthcare system to prevent illness in the first place. Hamish shared the history and idea behind the innovation outlining 7 Requirements for the system: i) Better health outcomes for you; ii) Quicker prognosis for your doctor; iii) Shared Patient Care among your Caregivers; iv) Interoperable amongst their different systems; v) All under your Control, vi) Transferable; Accessible, Portable & Private; vii) Free for both you and your doctor.
Hamish finished his short talk, and suddenly, “Access to information”, “Better health care delivery”, “Control and empowerment”, “Patient in the centre of the health system”…a lively discussion had suddenly started and Hamish was under a stream of questions. Details in the next blog post…!
Are you ready to find out what your doctor is saying about you?
I personally like the idea of a doctor sharing his notes with the patient. So many other people do. That is why a year-long OpenNote project kicked in few weeks ago to find out if this transparency can facilitate doctor-patient communication, educate individuals about their own health and improve health outcomes. The team of nurses, physicians and 25,000 patients at Beth Israel Deaconess, Geisinger Health System in Danville, Pa., and Harborview Medical Center in Seattle got seriously involved in the project. Peer-review evaluation by both doctor and patient is to come.
There are two sides of this “coin” being discussed. One is sharing the notes with the patients will improve their understanding of health, empower, educate and engage them more while adding transparency. Another is sharing the notes may lead to confusion and panic on the patient side. Thus, because of a specific terminology and abbreviations, individuals may take doctor’s notes in a wrong way. For example, OD does not mean overdose, but rather oculus dexter, or right eye.
It is said this system of sharing the notes will benefit those who have many medical problems and visit doctors quite frequently. It will let them be well informed about their health, ask questions and follow the medication and lifestyle regime prescribed by the doctors. Yet, I quite disagree with that. I do believe it will benefit those who do a general once-a-year check up – someone like me. If I do not understand the term I always can go online and check it, so other can.
More information on OpenNote project:
