EHR
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.
Government Priorities in New Zealand Healthcare for the Disabled and Disadvantaged
- Every health organisation collects patient healthcare information.
- Health results to be made available to clinicians.
- By 2014 an individually owned health record by all New Zealanders.
“Health IT is hard because it is a reflection of a culture and its beliefs”.
“Where do the 5%-10% of people with different disabilities and chronic illnesses, who actually really need improved health information management systems and who are obviously among the most costly to treat, fit in this system? Will we have to wait till 2014 or beyond until something will be available? Would it be an idea to put something out there, maybe not very pretty, but something simple, test it, get feedback from the users, improve, test again, get feedback, improve etc? We can quite quickly develop something which can change not only how the data is managed but actually positively impact the lives of many people and organisations who are supporting them, leading the way to transformation of medical industry.”
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…!
Whose rules for accessing personal health data?
Last week a couple of us attended a workshop in Dunedin put on by the National Health IT Board (New Zealand).
Graeme Osborne, who led the workshop as the Board Representative, correctly observed that “Health IT is hard because it is a reflection of a culture and its beliefs.” Correct, and in a multi-cultural society, you have multiple sets of social norms and individual expectations.
Everyone wants a break-glass policy whereby all their personal data can be accessed in an emergency situation, but no-one wants any random clinician or health worker to be able to see certain things about their health (mainly related to mental, sexual and genetic health details). This makes it really difficult to create national standards with a single privacy/access rule. Different people and different cultures hold different viewpoints as to what should be easily accessible.
New Zealand national health IT policy has 3 objectives, but like most of the rest of the world only 2 of these objectives are really being concentrated on at a national level. They are both to do with linking Primary, Secondary and Tertiary care by data standards.
1) That every health organisation collects patient healthcare information.
2) That health results are made available to clinicians.
3) A personal health record for all New Zealanders by 2014.
The third point seems to be so contentious that it is essentially being left to marketplace innovation to see if anything practical may result.
While there may be some default settings in terms of clinical data made available to other clinicians involved, I believe that transferrable and accessible health data can only work if individuals are empowered to control their settings. But there is a lot of patient education that has to happen before most people in society are even aware of all the pertinent issues so they are able to make the right choices.
Which is why at Lifetime Health Diary™ we are working with communities. Not only does this allow people to discuss with peers and people they respect to guide them through the minefield of information rights inherent within Health IT, but as the CIO of a large hospital here in New Zealand recently told me “No matter how good the data within my hospital is, 90% of healthcare takes place out in the community, and I see 0% of that”. Well said. National data standards cannot collect data that is not part of the system to begin with!
So whose rules for accessing health data? The individual, informed by communication with their community, which in turn need representatives who understand the issues and communicate with the national health bodies responsible for data standards. A little bit of effort expended in this area may return a lot more back to the health system in term of engagement from people than yet another clinical data sharing standards project.
Yours in health,
Hamish
iPad, healthcare and those with disabilities
I am always fascinated with new technology. But I am fascinated even more when these cool gadgets find their way to solve the problems of minorities and those with disabilities, or improve healthcare delivery, or both.
That is why I am so impressed how iPad (which initially when released was no more than another super cool gadget for me) is slowly becoming a valuable tool in a doctor’s office. It proves to positively impact doctor-patient communication and allows patients to better understand their condition. Besides that, iPad represents a completely different, very rich visual experience when using EHRs, or any other applications.
I am also impressed with iPad being able to help those with medical disabilities. As the article points out iPad is very easy to navigate for the patients who are suffering from Parkinson’s disease and for anyone with diminished fine motor skills and other disabilities.
As it turns out, iPad may be opening opportunities for healthcare system to engage more those with disabilities and help them better communicate with the doctors so to improve health outcomes. Would love to see that happening… sooner rather then later.
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:
Patient-centered healthcare – so where is the patient?
Sometimes you almost feel sorry for those in the medical industry trying hard to make healthcare more patient-centric. Pauline Chen M.D. writes in her latest blog post about the adoption of “Patient Medical Homes”. Designed to help patients see a full suite of caregivers under a single roof, they turn out to have often made patients feel dissatisfied and unsure.
Once again it turns out that patient perspectives were largely ignored and the Patient Medical Homes were designed by medical experts, with the ironic results of unhappy patients! What should be a great initiative misses the boat without patient involvement and feedback. Pauline writes “In working so hard to adopt changes on their patients’ behalf, clinicians had temporarily lost their focus on the patients themselves.”
Gosh, sounds a lot like the design of Electronic Health Records doesn’t it? One of the big surprises for me as I embarked on a study of healthcare delivery to help build Lifetime Health Diary™ was the apparent disinterest, even outright dismissive attitude that so many clinicians have in accepting “patient inputs” to Electronic Health Records. After all, in their view that would be “unreliable data”.
Perhaps it would be unreliable at a clinical level, but that doesn’t mean patient inputs should not be collected and taken note of. So many physicians have told me that “clinicians think in stories”. Even surgeons in the emergency-filled requirements of an ICU. It begs the question, “whose story?”. How can that story possibly be represented in a 15 minute consultation, or read off the chart of a patient in a hospital bed? It can’t and it never will be. Evidence Based Medicine may help define best practice clinical pathways, but it does nothing to make me the patient feel that my own story is being understood or even cared about.
In fact, what would happen if a significant amount of patient inputs were found to be reliable? Perhaps in some situations even more reliable than clinical data? Certainly at least for chronic illnesses it seems obvious that gains in patient engagement in terms of monitoring their lifestyle would likely outweigh any consideration of “non-clinical” patient inputs being collected and noticed in the first place.
So we shouldn’t really feel too sorry for most clinicians making the effort to be more patient-centric, because until that actually includes genuine patient inputs in the form of structured data (not just side notes) “patient-centric” is all too often just medical code for “clinician-centric opinion about the patient”.
In health,
Hamish MacDonald
