I will speak on Monday in Bilbao at an event with 3 names but one goal: to understand how to use social media to innovate and improve health, with a special focus on evidence and the future. I’m looking forward to learning from my hosts and listening to two beautiful languages.
Here’s the title of my talk in Basque (which speakers call Euskara and is said to date to 7000 BC):
Osasuna 2.0: EEBBtako osasuna aroa digitalan: osasunari buruzko informazioa Interneten bidez sortu eta partekatu
In Spanish:
Salud 2.0: La salud en la era digital en EE.UU: crear y compartir información de la salud a través de Internet
In English:
Health in the Digital Age in the U.S.: how people create and share health information via the Internet
One section of my talk will focus on “roadblocks and opportunities” for participatory medicine and peer-to-peer health care, two concepts the Pew Research Center has explored and which I’ve written about on e-patients.net. I’m looking forward to hearing from my colleagues at the event who no doubt see other roadblocks and opportunities in their own communities. I’ll bring their insights back to the U.S. and share them here.
In order to get the conversation started, here is my list (translations courtesy of Google Translate, apologies if they are inaccurate):
Oztopoak/Obstáculos/Roadblocks:
- pockets of people who are truly offline, which mostly describes people age 70 and older or those living with chronic disease or disability.
- people who see no reason to engage in their health, who are not motivated to change their behavior or seek treatment.
- technology that is simply a pain to use.
- communities and tools which are silos of information – unconnected to clinical practice and unable to connect with each other.
- a lack of awareness that online communities, information resources, and other tools exist and can help make a difference in health outcomes.
Aukera/Oportunidades/Opportunities:
- caregivers who can help someone access online resources they may need to get better care. Second-degree internet access combined with the power of love.
- a life-changing diagnosis or other event can prompt engagement – and trigger the diagnosis difference, which Pew Research has documented.
- mobile adoption is on the rise and seems to have an independent effect on people’s engagement online – triggering the mobile difference, another Pew Research finding.
- technology that is easy to use, that makes engagement fun and even irresistible.
- technological means to connect silos and let data flow.
- mainstream press coverage, word of mouth, and clinical programs that help to spread awareness.
For more background on what I will discuss in Bilbao, please see: Health Care Hackers; Caregivers: a celebration; The e is for engagement; Peer-to-peer health care: Crazy, crazy, crazy, obvious.
Since I’ll be traveling, with limited connectivity, I may not be able to approve comments until I return to the U.S. on Friday, July 12. Please be patient — they will stay in the queue and we will pick up the conversation then!
I keep on forgetting to sue those guys….but how come only your English title doesn’t use the term Health 2.0. After all, I’m not going to sue you!
Anyway, please report back–I’ve always meant to figure out what this conference was about and never got to do it. We do have a strong chapter in Barcelona, but as you know Catalonia and the Basque regions are different countries!
Matthew, I can only speak for myself when I say that I fear you and therefore never even utter the words “Health 2.0.”
KIDDING.
I wrote my talk title and they translated it. Don’t sue them. They’ll never take you out to dinner if you do and that would be a great loss to your palate.
The event comprised about 130 clinicians, health economists, academics, policymakers, communications experts, consultants from all over Spain, but many (most?) from the Basque region. Diverse topics were covered, but I must admit that I didn’t attend many of them since there was no Spanish-to-English translation for me or the other non-Spanish speaker, John Powell of the NHS. We cursed our French education and then went to sit in the hallway, where we essentially conducted a two-person unconference (joined at various points by people who wanted a break from the overly warm auditorium).
If you’re going to be stuck on the health conference equivalent of a desert island, pick John as your +1. Here’s his site:
http://johnpowell.org/
I learned all about the history of NHS Choices and their very ambitious plans for the future (including a sneak preview of their new site). We shared insights and memories of our early days as researchers in this field (13 years for me in health/tech). We agreed that we were very lucky in our mentors — John’s is Muir Gray (or see his tweets) and mine, in health, was Tom Ferguson.
We took our unconference across the river to the Guggenheim and spent a couple of hours walking and talking in that incredible building. There were many interesting pieces, but the artist I found most intriguing was Glenn Brown, who, in an interview, said: “I like my paintings to have one foot in the grave, as it were, and to be not quite of this world. I would like them to exist in a dream world, which I think of as being the place that they occupy, a world that is made up of the accumulation of images that we have stored in our subconscious, and that coagulate and mutate when we sleep.” See: Berlin Art Link
During the long lunches, dinners, and walks with other attendees (many of whom spoke beautiful English) I learned about Spain’s role in the EU health ecosystem, what is working, what is not, what is hopefully on the horizon. I’ll collect some other notes and observations from #salud2eus — and maybe some other attendees will post comments.
Susannah–bit distressed to discover you don’t fear me, but I guess I’ll get over that. You did though miss out on the major controversy in the Basque country–which is whether Athletico Bilbao should allow non-Basques to play on the team.
http://en.wikipedia.org/wiki/Athletic_Bilbao
On one of my epic walks around the city I did visit the old stadium and see the new one going up. Wish I could have attended a match. Next time!!
(( Lo siento por los errores: Google Translate ))
Matthew, sólo puedo hablar por mí mismo cuando digo que me temo que, por lo que ni siquiera pronunciar las palabras “Salud 2.0.”
Broma.
Yo escribí mi título de conversación y que traduje. No demandarlos. Ellos nunca te invito a cenar si lo hace y eso sería una gran pérdida para su paladar.
El evento contó con unos 130 médicos, economistas de la salud, académicos, políticos, expertos en comunicación, asesores de toda España, pero muchos (la mayoría?) De la región vasca. Diversos temas fueron cubiertos, pero debo admitir que yo no asistí a muchos de ellos ya que no había ninguna traducción del español al Inglés por mí o por otra persona que no habla español, John Powell del NHS. Estamos malditos nuestra educación francesa y luego fuimos a sentar en el pasillo, en el que básicamente realizó una de dos personas unconference (unidas en varios puntos por la gente que quería un descanso de la sala demasiado caliente).
Si usted va a ser pegado con el equivalente de conferencias de salud de una isla desierta, elige a John como su 1. Aquí está su sitio:
http://johnpowell.org/
Aprendí todo sobre la historia de Opciones de NHS y sus planes muy ambiciosos para el futuro (incluyendo un adelanto de su nuevo centro). Compartimos ideas y los recuerdos de nuestros primeros días como investigadores en este campo (13 años para mí en la salud/tecnología). Estuvimos de acuerdo en que tuvimos mucha suerte en nuestros mentores – John es Muir Gray (o ver a su tweets) y la mía, en la salud, fue Tom Ferguson.
Nos tomamos nuestro unconference otro lado del río a la Guggenheim y pasó un par de horas caminando y hablando en ese edificio increíble. Había muchas piezas interesantes, pero el artista que me pareció más interesante fue Glenn Brown, quien, en una entrevista, dijo: “Me gusta que mis pinturas de tener un pie en la tumba, como si fuera, y para ser no es de este mundo . Me gustaría que existen en el mundo de los sueños, que yo considero ser el lugar que ocupan, un mundo que está formado por la acumulación de imágenes que tengamos almacenadas en nuestro subconsciente, y que coagulan y mutar cuando dormir “. Ver: Berlin Art Link
Voy a recoger algunas otras notas y observaciones de #salud2eus – y tal vez algunos otros asistentes a publicar comentarios.
If you can read Spanish, check out Monica Lopez’s sketch notes from the event:
http://es.slideshare.net/mlopezortiz01/salud20eus13
Muchas gracias por venir! We really appreciated your effort to share your wisdom and time with us. Hasty pronto Amiga!
Thanks for your inspiring and full of content talk. Congratulations.
I’m surprised to hear you saying there wasn’t translation into English, as I asked a question to Mr. Powell which he listened to through his headphones, translated from spanish.
My english is not as beautiful as Luque’s or Bacigalupe’s, but I’ll do my best.
You talked about the interest of knowing about people’s motivations, and I think that’s a key point. I wonder why so many healthy people in the USA track things like their blood pressure, which I found to be quite useless. As a doctor, if a healthy person shows me his data on that, I wouldn’t spend a minute looking at them, as they are as interesting to me as how often he cuts his nails!.
Nevertheless, what leads people to track that, the motivation behind it could probably be aimed to more useful behaviours, as engaging to healthy actions and tracking your achievements, like ge-getfit or clubdelpaseo do.
Thank you!
There was indeed an excellent translator available for our morning keynotes. He translated our talks into Spanish and then any questions the audience had into English. The speech by Jon Darpón, the health minister, was the only one translated from Spanish to English.
I was intrigued by Mr. Darpón’s strong endorsement of patients’ rights to their data. My amateur reading of Basque history prepared me for a deep commitment to individual rights, autonomy, and democratic principles but I confess his statements still surprised me.
Maybe it’s because I don’t know your history as well as I should. We Americans pride ourselves on our democratic principles and yet there is still hesitation about giving patients access to their medical records and the data collected by their own medical devices (see Hugo Campos’s story, for example). And I studied French history, so am familiar with their passion for “liberté, égalité, fraternité” yet my impression is that there is a bit more paternalism in their health system than brotherhood (lots of talk of regulating online information, for example).
All of this is to say that I enjoyed learning about the motivation of the Basque government toward patient-centered health care, as well as the British government’s motivation, thanks to John Powell’s remarks.
Now, to the motivation question for self-tracking. Many more people track weight, diet, and exercise than track an indicator like blood pressure. Just looking at people who track their own health:
60% of U.S. adults say they track their weight, diet, or exercise routine.
33% of U.S. adults track health indicators or symptoms, like blood pressure, blood sugar, headaches, or sleep patterns.
Note the diversity of possible indicators — we just named those 4 in our survey question. Respondents may have answered “yes” while thinking of their own tracking of cognitive ability, mood, sexual function, or who knows what. At least I hope so. Next time we field these questions, we should ask — thanks for the idea!
One possible indication of the diversity of indicators is a set of questions I didn’t discuss in my remarks: health apps. We first ask respondents if they have a cell phone, then if they have any health apps, and finally, what kind of apps they have. We allowed people to tell us in their own words and recorded a wide range: heart rate monitoring, pedometer, calorie counter, pregnancy, hypnosis, medication management…
My colleagues and I were amused to find a small group of men who had menstrual cycle tracking apps on their phones. Of course it makes sense for multiple reasons, one of which is fertility — if you are trying to start or expand your family you don’t want to be out of town on ovulation day!
The other data I didn’t discuss is related to the impact of tracking. Why do people go to the trouble of tracking health data, for themselves or for someone they care for? Some say they get results:
– 46% of trackers say that this activity has changed their overall approach to maintaining their health or the health of someone for whom they provide care.
– 40% of trackers say it has led them to ask a doctor new questions or to get a second opinion from another doctor.
– 34% of trackers say it has affected a decision about how to treat an illness or condition.
In all, 63% of trackers agree with at least one of those statements of impact.
This has turned into an extremely long comment, so I’ll conclude. I love your comment about being as interested in someone’s detailed blood pressure charts as in their nail clippings. That resonates with the recent news of a “smart diaper” (ie, who needs it??) But then again, maybe the data is not for you, the clinician. Maybe the data is for the patient or their family member to know how things are going, whether they can repeat the steps that led to last night’s good sleep or today’s good appetite or this week’s higher cognitive ability. Our survey suggests that tracking is widespread and having an effect on people’s health. What happens next is up to people like you and your patients.
I will admit to being a little baffled by the idea that a patient showing you his or her blood pressure data being “as interesting to me as how often he cuts his nails” — how can that be? To me, data like this is *far* more interesting than the once-a-year blood pressures we measure in the office; if I have a patient I believe to be healthy who has a normal blood pressure in my office, that tells me only that that patient’s blood pressure was normal at that one moment — hardly the definition of a “healthy patient.” If I have a patient who has data across 365 days that shows me trends, it’s much easier to be able to decide if the person is healthy.
Overall, I see self-tracked data as a way to start ushering in a new era of understanding health. Perhaps our way of sampling data from patients once or a handful of times a year (as we do in the healthcare setting) is accurate and reflects the greater picture of their overall health — but perhaps it isn’t, and we miss far more than we would catch with richer data sets. I’d bet on the latter, but without the data, there’s no way to know.
Mr Levine: I wasn’t talking about patients but about healthy people. I wrote it carefully.
I imagine a healthy young man or woman (probably the profile of the 33% in the US that track an indicator as blood pressure) sitting in front of me , taking out of his pocket 365 blood pressure registers under 140 and 90 Hg mms, wanting to talk about that day when he had an important date at work and his blood pressure was 138/87, or even 140/90, wanting to discuss about it and…
Of course I understand your point of view, but nowadays my knowledge on blood pressure issue doesn’t allow me to take those tracks into account.
When I said “how often he cuts his nails”, I thought there could be a relationship between nail growing speed and nutritional issues, for example. Maybe, in the future, that could tell us something and we can ask people to track such a thing in order to make nutritional counselling.
I think today we are in the collecting data phase. I will keep on working as I’ve been doing it, so today I won’t look at healthy people’s tracks of blood pressure in my office, as I just don’t know what to say or what to do about them.
If I learn about that in the future, I’ll be glad to work on that and discuss it with my “patients or not so patients” 😉
Thank you both for sharing your perspectives and experience. My colleagues and I are working on our next report, which will focus on the differences among people who report no chronic health conditions, those who report 1 condition, and those who report 2+ conditions. Since it’s salient to this discussion, I’ll give a sneak preview:
19% of U.S. adults who report no chronic conditions say they track a health indicator or symptom.
40% of U.S. adults who report 1 chronic condition say they track a health indicator or symptom.
62% of U.S. adults who report 2+ chronic conditions say they track a health indicator or symptom.
Again, there are caveats because of the question wording and limitations of survey research. Please see the full general population report, Tracking for Health, for details.
However, I think this data sheds light on the phenomenon that Dr. Usoz and Dr. Levine are discussing (or, if I may, Blanca & Jason, since we’re all friends here online). The more serious someone’s health situation, the more likely they are to track a health indicator or symptom. Blood pressure may not be a good example, for the reasons stated above, but what about patterns of headaches (paired with a food diary or sleep diary)? Someone who is dealing with an acute issue or one that just crops up every once in a while may track their health as a preventive or diagnostic tool.
Just some possibilities as we explore this area together! I am so happy to have connected our U.S. research & community with that of the Basque region & Spain.
Mr. Holt, please take in mind that half people in the Basque Country are women. Although being Bilbao’s lovers, we don’t care too much about football 🙂
Ha! Already in the spirit of teasing Matthew, an enjoyable health geek tribe sport in the U.S. — excellent!!
I will say that there was a loud debate in the two rows behind me on my flight from Paris to DC about the Basque football club decision, so it was a big topic. And I’m a football fan, though not as passionate as Matthew (or the guys on the plane).
If anyone is interested in learning more about ancient Basque history, including the ancestral laws that were later called “fueros” (and by later I mean the 11th century) please see:
http://www.buber.net/Basque/History/fueros.html
OR
http://books.google.com/books?id=_xQJAAAAQAAJ&pg=PA873&lpg=PA873&dq=basque+fueros&source=bl&ots=O9_uVAPxSd&sig=RLKpOaxakdHVf61F78j1aohCBTs&hl=en&sa=X&ei=AxDkUY-5N8Wx4APhlICAAQ&ved=0CGcQ6AEwBg#v=onepage&q=basque%20fueros&f=false
OR
http://books.google.com/books?id=oQpfod-EQDsC&pg=PT192&lpg=PT192&dq=basque+fueros&source=bl&ots=lxe_fxc_iq&sig=Ambw8FzPxyeS11KRXP2XegV8J9M&hl=en&sa=X&ei=AxDkUY-5N8Wx4APhlICAAQ&ved=0CG0Q6AEwCA
If you know of other sources, please post them.
Susannah,
It was a pleasure to hangout in Bilbao with you and to show you a little but of the place (and food). Looking forward to seeing that report on e-health usage among chronic and multi-chronic patients. Another incorrigible research addict request…
Thank you! When people ask me about my time in Bilbao, I’m telling them that I learned how to be a host — from you, Luis, Roberto, Irune, Elena, Alain, Paco, and others — who made me feel like a royal guest. Please come to DC so I can return the favor!
In the meantime, I’ll give the gift of a new research report, ASAP.
An interesting aspect is that caregivers can help
patient to access online resources.
Great changes in ehealth too including caregivers.
It is necessary to teach the caregiver and provide right devices
to access those resources.
Yes! If you are looking for evidence, the Pew Research Center recently released a full-length study on this topic:
Family Caregivers are Wired for Health
Here is one chart that captures caregivers’ “stop at nothing” drive to gather information, for example.
Another interesting aspect is “people who see no reason to engage in their health”.I think that using social media can motivate these patients to integrate in Participatory Medicine.
I’d love to hear more about why you think this. People are trying to measure this aspect of social tools — what are your own observations?
Joyce Lee, MD, has shared her excellent slides on how clinicians can use social tools to engage the public:
Social Media and Academic Medicine: Dangerous Liaisons?
Wendy Sue Swanson, MD, has shared this article:
Social Media as a Tool in Medicine
And, last but not least, one of the people who hosted me in Bilbao — and in fact the person I often credit as the #1 reason why I see a benefit in being active in the social space around health/tech research because we otherwise never would have met and learned about each other’s work: Francisco Lupianez-Villanueva (but everyone calls him Paco). Here’s his excellent bibliography of studies related to the consequences of information and communications technology on society, particularly on health.
COPD (Chronic obstructive pulmonary disease) is a major issue of health beacause of its elevated prevalence (9,2% population aged 40-69). Of them, 78% without diagnosis (IBERPOC study)
Both supervivence and life quality in these patients are associated to early diagnosis of COPD. It’s quite difficult because patients don’t think they can be ill, as they consider their symptoms as normal.
We use a test to detect COPD, spirometry, which is quite easily performed. Tracking its results , we would be able not only to diagnose people afected by COPD, but also to see trends to illness in someone, which would be very useful to detect and act about it soon. But we don’t have a good way to track and compare those measures.
Thank you, Blanca!
By way of explanation, Blanca tweeted:
And I asked her to explain.