Patient-centered
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?
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)
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.”
The Benefits of Medication Management & Optimisation
My post last week on Tools to help pharmacies manage medications has received comment in various places, so I thought I would extend it out a little more.
Last week I observed that both here in New Zealand and in the USA, pharmacies are increasingly moving into the field of medicine optimisation through medicine management. Why not? After all pharmacists are acknowledged experts at handling medications.
Dave Nazaruk in a white paper he produced for StayWell Custom Communications lists some revealing statistics on P.15 that show the cost of not managing medicines properly:
- The (US) healthcare system incurs more than US$177 billion annually in mostly avoidable health care costs to treat adverse events from inappropriate medication use.
- MRPs (medication-related problems) rival the costs of cardiovascular disease…for every dollar spent on prescription medications, we spent approximately the same amount treating MRPs associated with those medications.
These are pretty sobering statistics. Medication management and optimisation is currently a very ad-hoc system, full of loopholes and inefficiencies. GPs do not necessarily know where your prescriptions will be filled, and pharmacies do not know if you are on medications from other GPs in addition to the GP clinic that their pharmacy prescribing systems is directly connected to.
Apart from the inefficiencies, it is downright dangerous for people to be on multiple medications without having a systematic method of management. From my own anecdotal evidence, earlier this year a GP here in Dunedin told me that the worst case he had heard of in New Zealand concerning a lack of medication management resulted in an elderly lady being on 73 medications prescribed from 42 GPs! I asked him what safeguards were in place to prevent that kind of situation, and he replied, “Nothing!”.
So what might better risk assessment tools look like? Ultimately, such a tool needs to be wrapped around the patient, so the record can travel with them. In the short term however, a lot of efficiencies would be gained from community pharmacists and GPs and other providers being able to better comprehend a multi-medication patient’s medication regime. Currently, the data sources are not only disparate, but understanding them is non-intuitive, difficult and time-consuming.
This is easier said than done, gathering medication sources is not just difficult technologically, but involves an exercise of covering up data gaps and assumptions behind members of the care providing team that are often not captured systematically. And then reconciliation of all the data take the challenge to a new level altogether! However, the rewards in terms of better health outcomes for individuals, as well as system savings as a result greater efficiencies make this space an imperative for innovation.
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…!
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?
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
Lifetime Health Diary™ Development for End Users
One of the things that surprised us as we quietly posted Lifetime Health Diary™ up in public view last month was the enthusiastic reception we were to get from the medical industry almost straight away. We thought we would need to do half a year or so of end-user marketing in order to get the interest of health professionals. But from clinical trials for medication optimisation to assisting with robot dispensing of medicines, Lifetime Health Diary™ data display advantages have meant that we immediately started focusing on sales path for the medical industry.
However, we have not forgotten our roots and our underlying mission – to provide individuals with a simple means to monitor and engage in their own healthcare. To put people at the center of their care regimes and above all, to help people focus on prevention and assist health professionals in discovering cases where early intervention can save heartache and expense later. We started last month with a simple prototype, and from that have learned quickly about areas we can improve on, and have noticed things we would never have guessed by ourselves. It really is true that if you put something “out there”, you learn what you really have. Thank you to all those who have cared to give us advice, time and feedback.
So it is with a feeling of sincere satisfaction that we have opened up a path to improving our app’s usability. In other words, making it easier for you to enter and display the information that you wish to see in your Lifetime Health Diary™. Sam will be leading the technical side of our end-user experience, supported by Katerina and Aga in both gathering information from people on the ground using our application as well as applying their design sense to its look and feel. Some others from our team may also be joining this effort.
We are also embarking on wide scale co-operation with a large number of community groups and social welfare organisations here in Dunedin to have their caregivers use Lifetime Health Diary™ to help those most in need avoid slipping through the cracks of the healthcare system. Aga will be driving this effort as a fulltime volunteer with her support group Ignite.
There is some planning and implementation to come, but just wanted to let you know you can look forward to some significant usability improvements over the coming while – don’t forget to drop us a mail from the website with any improvements you would like to see!
Yours in health,
Hamish
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
