I have been thinking about the goals of primary care research networks. One of them is to engage members. In a recent discussion at the CFPC section of researchers, we named three roles in a network:
researchers – people developing the grants, studies, running the analyses, writing the papers.
collaborators – practitioners and patients who are involved in setting priorities, engaging in performing the research and providing access to information to help answer the questions.
users – people who consume the information generated from the network. These can be people in the network and outside the network.
An individual could play all three roles, of course. It could be that I am researcher in one project, collaborating on two more that interest me (by contributing questions, parts of answers), and being a user of findings from all the other research.
Most providers today are knowledge users. Members of research networks are collaborators.
How to increase the number of collaborators?
Networks are one – intel decrease the barriers to contributing and they can help to shift the culture to collaborative research. I am interested in this space as well as supporting people becoming contributors.
Restructuring medical practices so that the environment facilitates the collaborator role. The medical home concept can provide the structure and space for groups to act as collaborators in generating and validating knowledge. In Canada, the medical home is becoming a bigger push and it has a clear goal related to research: ([from the CFPC](http://www.cfpc.ca/uploadedFiles/Resources/Resource_Items/PMH_A_Vision_for_Canada.pdf))
Goal 8: Patients’ Medical Homes will serve as ideal sites for training medical students, family medicine residents, and those in other health professions, as well as for carrying out family practice and primary care research.
How do we support (and evaluate) this goal? How to include PBRN connectivity into this goal? It would be interesting to have requirements for medical homes to include engagement in a network. Further, aligning QI activities and leveraging action research methods that directly improve the lives of the collaborators are also helpful in engaging.
I was in an pan-Canadian EMR Benefits Evaluation meeting today hosted by Canada Health Infoway. A little heated debate came up around the value of coding data. Some fell on the side of don’t bother coding, use free text and fix it later”. I fall on the other side of trying to do it right the first time. Clinicians can code and I think they should, so they can get some of the advanced feedback and functions of EMRs
I am a supporter of free text -d on’t get me wrong. Narrative is very important to our current recording practice. However, selective coding does have value in places like medications, allergies, problem lists (labs should have attached codes from the lab automatically).
However, if it takes the physician 30 seconds to properly code an item on the problem or if a user needs to memorize SNOMED CT codes likethen we are designing our EMRs wrong.
Rather than saying don’t bother coding, I suggest we should be asking:
How can we make the User Experience so elegant that coding is seamless?
The FutureMed conference ended on Saturday (Feb 11) at the NASA Research Park. Successful conference? I definitely feel like it has been an amazingly successful week. How to think about success for a conference like this? How about three ways:
- New Ideas and Actions
We were presented with huge amounts of data and information. Big Data was topic, but it really was how the sessions were arranged as well. I enjoyed the range of what was covered and glimpsed into some cutting edge areas. The closeness of genomics to practice was a key take away.
The working session with IDEO was a highlight for me as was the site visit to Kaiser’s Garfield Innovation Centre. IDEO was a highlight as, first, I’m a big fan of their work, but also it was a good chance to apply thinking and learning.
A lunch conversation with Alex Jadad was also a highlight. I appreciated that he did not know anything either (and that’s a good thing, right Alex?).
A lot of discussion on application of what was presented occurred in the breaks and meals between participants and that was great.
Amazing participants throughout the week – this includes faculty and students. The networking was in full force. Many amazing and energized people in so many areas of medicine, tech and beyond. I was quieter than I expected through the large lecture sessions (my gears were churning through ideas). Still, I found excellent collaborators and many like minded people in our group – I enjoyed all our interactions.
The twitter feed #futuremed was flowing fast and furious by a few participants and that was great. There were several keen start ups looking for feedback, and I hope I helped them a little.
Ideas and Actions
So it’s only good if it spurs new ideas that translate into action.
I filled my notebook with ideas and bad sketches of products from information applications to devices. That ideas were pouring out throughout the week was a good sign of success. Many quickly were shared with new friends, micro-incubated, and revised. One idea bubbled up as a fantastic idea with what we felt was real potential. To use a favourite Silicon Valley term it’s a “startup in stealth mode”. So if that takes off and does half of what it could to change research, this would be a week well spent.
I’ll have to wait and see how much of this week translates into real action, but I suspect that there will be many actions that are triggered or changed from this week for many of us.
So this last week has been a successful week and definitely it is certainly memorable.
I’m glad to be a part of the Singularity University Alumni.
Half way through the FutureMed conference — it seems like there is barely time to process what’s being presented, but each morning I wake up with some new neural connections spinning into an idea.
Saw the WIMM Lab’s WIMM One device and saw several possibilities for research studies. This is a little android device with a 1 inch square touch screen and a bunch of other tech. Not as full featured as a smartphone, but smaller and cheaper and easier to ask people to keep with them.
The talks have been great and wide ranging from abundance to aging to genomics and proteomics — we are seeing and discussing some cutting edge topics with people working in these fields. I really felt the conference has been picking up speed exponentially since day 1.
Last night was the unconference and there were so many topics from around the world, it was great. Topics ranged from product ideas (web, mobile, medications, health system changes) to sharing global experiences to “let’s design how to improve the health of a city”. Great and heady stuff that went on way past my usual bedtime (not hard to do for those of you who know me).
Ironically, they everyone received a Lark. A sleep monitor! At first I thought how ironic (activities here start at 6:30 and last night didn’t wrap up until 11ish). Then I realized the sleep monitor (I scored a 9.4 / 10 for sleep quality last night but was scolded for quantity) wasn’t the business model – the alarm was. It is also a high tech alarm. I’m guessing Daniel Kraft had a hard time getting last year’s attendees to the first sessions on time.
This week I am at FutureMed at Singularity U. Starting off as a great conference with an amazing group of attendees from all over the world (especially Brazil).
Dr. Peter Diamandis gave the keynote — a positive speaker with his new book, Abundance, about to come out. Very future focused and inspiring.
Some themes and thoughts from today:
- Capacity – we have seen a lot of growth in capacity in many areas. How do we develop huge amounts of capacity for health? The current models do not seem able to scale. We need to really innovate in models of care.
- Challenges of mis-alignment between regulation / payment vs innovation – there needs to be ways to foster innovation and adoption.
- Analytics and feedback are going to be key to the future acceleration. Particularly passive capture with quick feedback loops. For both providers and patients appear to be effective. Asthmapolis is an interesting example.
- GIS could help us better understand patterns of illness and its environmental causes
- Cracking the behaviour change problems – a lot of what we struggle with in health isn’t the need for synthetic, 3D printed organs, it’s the need to get people moving, eating, and taking care of themselves. I am looking forward to more discussion on this as this is where I hope we can see major changes supported through consumer social health.
- Integration across the silos. Generalism or working across the “ologies” (endocrinology, ophthalmology etc.).
- Incubators – there are a lot of them around here in Silicon Valley. I have not seen similar support / interest in Canada.
- Big and Small: Global and Mobile Health.
- And of course, exponentials. Personalized medicine – genomics as an example.
These are just some quick thoughts, not capturing everything.
There is a lot of buzz about Big Data. Healthcare is an interesting area for big data. Privacy issues aside for the moment.
I have seen some significant improvements in care delivery when people use “small data” to inform decisions rapidly. IHI.org is built on this. Use data to monitor change. Change based on data. Keep what is an improvement. Stop what is not. Rinse and repeat until it is part of your culture.
Some of us imagine the potential improvements if there were big data to use rapidly in exploring questions and testing hypotheses.
But of course privacy issues cannot be put aside. Two ways to begin to address this (to get to big data) are engaging people directly (e.g. sharing my own data into the pool — you see this with 23andMe, etc) and finding novel ways to access the information gleaned from the data without needing to own the data. Perhaps the term for this is “Big Information” not Big Data.
Electronic Healthcare just published one of our papers on EMR Adoption
Great to see it in print!
Thank you all for offering up example questions for a potential research network – these are an interesting set of wide ranging questions. I really appreciate the time each of you has taken to provide some thoughts. These will be helpful as our discussions move forward.
Some interesting themes already jump out from this non-scientific sample, such as:
- Need to link to health system data (costs, general outcomes)
- Need to link to other patient specific data sources to answer questions or link to the same patient data across nodes in the network
- Clinical / interventional studies of EMR function and use, including CDSS.
- Workflow studies
- Evaluation of Complex Interventions
This is a great starting point and, of course, if any other readers want to share a question, that would be great.