e-Patients
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!
Powerful new “Doctor becomes an e-patient” story in Journal of Participatory Medicine
The original post by e-Patient Dave appears on http://e-patients.net/archives/2011/04/doctor-as-e-patient-jopm.html
Two years ago we wrote “Let’s hear it for the ‘d-patients’” — doctors who become e-patients themselves. We said “D-patients prove that patient empowerment is anything but anti-doctor. Heck, sometimes it’s a doctor preservationmovement.”
A new article in our Journal of Participatory Medicine provides a compelling example: A Physician’s Experience as a Cancer of the Neck Patient: The Importance of Patient Participation. The author, Itzhak Brook MD, makes our point:
I am telling my personal story in the hope that health care providers will realize the difficult challenges faced by a patient diagnosed with cancer and undergoing extensive surgeries. I am also discussing the importance of active participation of the patient and their family members in all phases of care.
JoPM co-editor Charlie Smith adds, in his introductory note: (emphasis added)
You may wonder why a physician’s account of his illness and the frustrations he experienced merit publication in this journal. But, if a doctor has this degree of anxiety, this much difficulty getting information about his care and this degree of struggle making good decisions, then patients can easily understand why they feel so overwhelmed and incapable, at times, of truly “participating” in their own care. What we are advocating for is difficult in the best of circumstances and requires all hands on deck for the task!
I – and many other patients – know exactly what Dr. Brook means when he says:
…both of these approaches [physicians who acted "half full" and "half empty"] deprived me of being truthfully and fully informed about my prognosis, which is essential for making logical choices concerning treatment. I preferred those who told me the truth about risks and my prognosis, even if it was not rosy. I always voiced my preference to the physicians so that they would be aware of my wishes and so we could, hopefully, develop a trusting relationship.
When his radiation oncologists failed for five days to get the machine fixed or send him somewhere else, he asserted himself and did get sent elsewhere. He writes, “This lack of initiative left me feeling that they were indifferent to my plight.” That too will sound familiar to some.
Then, when he reported side effects and needed to be cared for:
“I needed the doctors to be there for me but, instead, they left me feeling like I was pestering them with trivial issues and complaints. Everything was so new to me. I was concerned and worried about my symptoms and looked to them for advice on how to cope. I also needed reassurance that these were expected symptoms and that they would go away afterwards. Fortunately, I found receptive ears and helpful advice from the clinic nurse.”
In my speeches I often start by saying, “Patient is not a third person word. Your time will come.” What a great example this narrative is.
There’s much more in the full article. Please, patients and providers alike, read the whole thing and think about when your time will come
New “body browser” tool
Got a sneak preview of a Google tool called “Body Browser” thanks to Desiree Miloshevic from #webGLCamp2 .
Watch the video.
Now how do you think this might fit into the Lifetime Health Diary App?
Suggestions Please
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.
Health 2.0 Conference Highlights
It was a very patient-oriented conference. Intense, collaborative and lots of social networking. The “Patient 2.0” session concentrated on themes such as how to engage a broader population in healthy life. Behavioral change. Connecting with real people using their language. ROI on the patient, outcomes, data…
The entire conference was full of innovation. Many young companies with clever and promising ideas. Doubtful as to whether the ecosystem can support all of them, but some will end up being transformational. For example, many companies were focused on consumer compliance for medications, which is an area that has been worked on for 30 years, with mixed results.
Using aggregated data; the US Government is very keen to open data to the public, Health and Human Services CTO Todd Park is a driving force behind making that happen. Making sense of narrative data is a challenge for now, but everyone looks forward to that.Transforming data to information to knowledge to action. Ron Zeiger of Google Health spoke about
“Finding an easy and fun way to collect data, open systems. Collaborative Health Records”.
There was an excellent Venture Capital Panel (Don Case, Esther Dyson, Lisa Suennen, Mitch Kapor, Bryan Roberts) at the end of the 2nd day: About half seemed not overly keen in investing in health IT (Esther was a notable exception) because it is still a rather vague industry and the ROI is often not immediate. However, Esther Dyson made some telling points; the Health IT world has changed because ubiquitous mobile technology and ubiquitous sensors are disruptive forces that allow creators to go straight to patients and clinicians with their products and services, bypassing hospitals and bureaucratic health systems.
It was invaluable to hear some of the great advice from the investors, such as 1) tell the story about your company, why it matters, what will it do for the system. 2) Short but deep advice from Esther:
“Be imperfect”, read VC suggestions before approaching them; “Be considerate of what the other person wants to hear, not what you want to tell”.
Overall, it was a great event to attend, get a feeling for the industry, meet with innovative, visionary people, chat formally and informally, brainstorm and develop new ideas. Looking forward to keeping in touch with everyone!
Yours in health,
Hamish
Social media and pharma – the journey so far
I first “met” Rob Halkes on the Hospice and Palliative Medicine twitter discussion group – it meets and discusses at 8pm every Wednesday evening Central Time for an hour and chats all week under the hashtag #hpm.
Rob just published his latest slide deck on healthcare and social media. It has 45 slides crammed full of value.
Read it.
P.S. I put a quick comment on the deck that said
“Great summary, Rob. This clearly summarises the journey-so-far for pharma and patient engagement. What you could add is the next generation of applications which are being designed and built around the patient rather than the doctor/clinic/drug/pharma which will shift the balance of power from a communications perspective firmly towards the patient and away from Pharma and Physician. #VRM”
Health 2.0 Conference
Our theme today is the Health 2.0 Conference, taking place this week in San Francisco.
I will be in San Francisco Oct 6-10 for Health 2.0
San Diego 10-14 (Biotech and Pharma)
DC / Penn / NY? And Boston? 15 – 24
The conferences I hope to attend in this time include AdvaMed, Connected Health, and maybe the NCPA 112th Annual Convention and Trade Exposition
Health 2.0 – is the first on the list. Katerina and I will attend the Patient 2.0 session on Wednesday:
Time: 3pm-6pm, October 6
Place: San Francisco Hilton
Advocates include:
- Regina Holliday, Medical Mural Advocacy Project
- Amy Tenderich, DiabetesMine
- Nicole Boice, The Children’s Rare Disease Network
- Ian Eslick, MIT Media Lab
- Gary Wolf, Quantified Self
- Gilles Frydman, ACOR
- ePatient Dave de Bronkart, Laugh, Sing and Eat Like a Pig
- James O’Leary, Genetic Alliance
There will be a stream of tweets, the conference official hash tag is #health2con. Katerina will be tweeting updates as well from @katekson
- Here is the agenda
- This year’s main theme is “the emergence of the data utility layer”, which will include the changing landscape of Healthcare, social media, patient empowerment through knowledge, self-tracking and engagement.
- I am looking forward to the demos by new companies, commentaries from leaders in the industry on different issues such as data mining and analyzing, patient communities, consumer-centric healthcare etc. I should be in San Francisco until late Saturday.
By the way, good news…we finally finished applying for patent in the US, and are pleased to announce our new B2B product LHD MedView™ – which we will be looking forward to talking about with people during the conferences. Here is link to our info sheet for this new product
I am really excited and looking forward to connecting with people in the US the next 3 weeks. We’ll be posting blog updates every other day or more often directly from the conferences.
Yours in health,
Hamish
How much is too much medical information on the internet?
- Image via Wikipedia
Are there times when internet tools for mass communication are inappropriate for medical communications?
Take a look at this range of medical informational videos that I was sent by fellow #hpm group members.
- Talking about Death will not hurt you A presentation by Dr Gina Mohr education and training doctors.
- a video discussion about ‘partner in care’ for terminal patients in hospices and palliative care.
- the Fit for 50 program to promote fitness for over-50s.
- the right-to-die decisions video of Montana residents.
A wide range of subjects, levels of intensity and length of video communication. Some inform and educate, others lobby and others seek to create community involvement.
Howard Luks talks about ‘millennial patients’ the generation who is growing up with the internet and how they are using the internet as part of their crowdsourcing their physician, getting medical 2nd opinions online. He describes the millennial patient as
“They cannot understand, and they will (soon) not tolerate, this disparity in their ability to manage healthcare transactions as easily as they manage their financial transactions.”
He is challenging traditional norms of doctor:patient communication. And to to this he uses a private “portal” for email correspondence and promotes “Shared Decision Making“.
Lifetime Health Diary is closely following these discussions because we are keen to remain at the forefront of new paradigms in medical collaboration between patients, doctors and carers.
What do you think?
Should video be encouraged or discouraged?
What are its limitations?
And where should use be encouraged and where proscribed?
Time to take control of the situation…”e-patient advocates”
Every now and then I come across patient’s stories describing terrifying experience with our healthcare system, and stories on how this experience motivated them to become e-patients – engaged, empowered and educated. I am talking about people such as e-patient Dave , Trisha Torrey, Regina Holliday, and many more: people who experienced unfairness of a healthcare delivery, who were treated for something what was not there, people who struggled for their loved ones in order to obtain an appropriate care. Some – failed, unfortunately, others – succeeded. But no matter of the outcomes, they all became active “patient advocates” who are trying (successfully) to empower thousands of others, who are struggling to receive adequate care, obtain their records, who are getting in those “holes” of our health system where infinite medical errors and oversights occur during diagnosis (e.g. 1 out of 4 times the diagnosis will be wrong according to the report of the Agency for Healthcare Research and Quality), or treatment (medication side effects, drug interaction), or hospital admission/discharge, or during handoff process which occurs 4,000 times a day! Yes, seems like there are more opportunities for the mistakes than for accurate decisions…
And health professionals should not be blamed for this either. There are many stories out there where the nurses, or physicians, or surgeons saved thousands of patients’ life, and cured incurable.
What should be radically changed though is our inefficient healthcare system, not suitable for chronic patients, for people with disabilities, for retired employees, etc.; well.. Honestly it is not suitable for anyone, with its myriads of disparate silos, lack of standardized process in the hospitals, nursing homes, clinics, etc., lack of communication between patients and the doctors, doctors and nurses, primary and secondary care, and so on so forth.
However, what keeps me optimistic about our healthcare system, and gives me some hope it can be changed soon, can become more patient-centered is these “patient advocates” who through themselves out there and do what has to be done. Thus, recently, I came across the post by Elizabeth Cohen (CNN) and terrifying story about her baby-girl, which shows how lack of communication between health professionals within a single institution could take a life of a new-born baby, and how important it is for the caregiver (in this case – a mother) to take a charge of the situation and fix it before something bad happens.
So, the question is how long will it take for us, patients, (and, will it happen at all! or do we want it?) to start finally relying on our healthcare system without worrying much about following up on and checking every step made by our health professionals during the time we are seeking for health care?
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:
