Archive for the ‘Connectivity for Californians’ category

Revisiting Health Social Networking and Communities with http://www.inspire.com/brian

October 14th, 2008 | Popularity: 31%
1 comment

I got to revisit this topic with the person behind (or in front of the easy-to-remember) URL, Brian Loew, the CEO of Inspire.com.

I visited this the first time in May, 2008, when Brian and VP for Partnerships Amir Lewkowicz and I went for a short walk to talk about Inspire.

And I have to take a short break here to celebrate having a blog, that allows someone like me to remember when they last looked at something…

Back to the story, Brian offered me the opportunity to walk somewhere to meet him and go for a walking meeting while in Washington (well, I offered the walk to him). Again, twist my arm. And I’m glad I did. It has been a (short) while since I have been looking at the state of online communities for health. This could be because the last bit of excitement around these occurred around Health 2.0 this spring.

What hasn’t changed for me though, is the interest in supporting social networking in the empowerment/engagement of patients managing their health, so I was grateful for the update. Inspire.com has redesigned their site, and moved away from organization that is by health condition and more person-focused with the idea that someone will have multiple health interests depending on themselves and their families.

As I mentioned previously, Inspire has an interest in supporting clinical trials, and serves as an intermediary between consumer/patient organizations and pharmaceutical manufacturers looking to recruit interested patients who opt-in to trials in a privacy protected way.

What I am especially interested in the work I am doing the presence of a platform that could serve a diversity of health interests depending on the focus of, say, an employer group, a provider group, or a patient group. I have found a small hypertension community on Inspire, and joined it. It nicely allows me to indicate that I am there as a health professional/interested person rather than a patient with hypertension (at least not one, yet).

Near the end of our walk, Brian asked me an interesting question as we talked about how much patients think of their conditions throughout the day. He asked, “What would you think if you knew that I had a chronic condition?” My answer – that I would have a lot of respect for that person and pay close attention to their experience. I want to learn as much about people and the ways they encounter their health outside medical centers. I think other health care providers do, too, and I hope health communities can help teach as much as they learn.

e-patients: Safety Net Populations

September 19th, 2008 | Popularity: 30%
1 comment

e-patients: Safety Net Populations

The nice thing about the blogosphere is that when you get behind in your blogging, someone else will help you out. Thanks to Susannah Fox for writing about her experience with us in Oakland, California, around the sharing of Pew Research Data with safety net health care organizations.

The comments on the post are especially heartening, in that they support that involving the audience in the presentation of information is meaningful. In this case, they presented just as much information back, which is as it should be.

If I can have one claim to fame in the convening world, besides audience involvement, it is that internet access, checking e-mail, using the Web is allowed at the discretion of attendees. At the last two meetings where I suggested this, people seemed a little caught off guard that this is okay. I want to change that. Just as in the Results-Only Work Environment, in the Results-Only Meeting Environment, respect for people deciding what is most important to them creates the pressure I like, that I/we need to be more interesting than an e-mail inbox.

Patient Online Access in the Safety Net: Adam Szerencsy, MD and Neil Calman, MD’s slides

August 30th, 2008 | Popularity: 40%
0 comments | Leave a reply

These are Adam Szerencsy, MD and Neil Calman’s slides from the recent discussion in Oakland, “Patient Online Access in the Safety Net,” hosted by the California Healthcare Foundation.

Adam and Neil are from the Institute for Family Health, and as you can tell, have learned a lot in providing online access to their patients in New York City.

This presentation had special meaning for me for several reasons. The first is that Neil’s organization was the first to host me outside of my integrated health system environment, to learn about applying PHRs to the care of all patients. The second is that I got to watch Adam lead the rollout of IFH’s patient portal from the initial thinking through to watching him prepare his patients for its eventual rollout, when I got to watch him practice in Bronx, New York. You can read the story (and see the pictures at this link) about what that day was like. I still remember it as strong affirmation that there are really exceptional physician leaders among us, who with the right tools can be freed to do great things for their patients and their communities.

Patient Online Access in the Safety Net: James Kahn, MD’s slides

August 28th, 2008 | Popularity: 18%
0 comments | Leave a reply

Continuing on, in the publication of the stories of some of our nation’s leading edge safety net organizations in the area of patient online access, these are the slides shared by James Kahn, MD, from the University of California, San Francisco Positive Health Program. I had previously blogged about their myHERO patient portal, which is helping patients with HIV/AIDS manage their health better. Note the work underway on leveraging cell phones. There is a lot of innovation going on in these settings, because innovation is required to connect with patients who want to be connected. That’s a great feedback loop.

Stepping Through a Patient’s Experience with Hypertension: Maintaining control (yearly recheck)

August 26th, 2008 | Popularity: 31%
0 comments | Leave a reply

This is fifth of a multi-part series on a patient’s experience managing a chronic condition, in this case hypertension. A diagnosis has been made, and our patient has hopefully followed up and has hopefully been maintained on appropriate therapy (there is a 1 in 3 chance that this is happening). We are now in the maintenance phase, where it is recommended that a patient be checked once per year..

Click on the image to see it larger size


recheckyearly-eytan-htn

Patient Story (Frydman)

For today’s post, I am going to paste a dialog I had with Gilles, which contains some follow up questions I had about a new process for managing blood pressure


Ted: Ok, very helpful -

Gilles: I’d say amazingly helpful! See remark at bottom.

Ted: So what if the doctor said, “Your blood pressure in the office is high today. I don’t know if you really have high blood pressure though. Can I show you how to check it at home and will you check it twice a day, in the morning and at night, and then we’ll take the average and decide if you have high blood pressure?”

Would this make you anxious?

Gilles: I don;t think you can answer this question in a unidimensional fashion. It would probably be anxiolytic if this is the first time I heard of HBP. If this is what I hear at a repeat visit I almost certainly will be ready to hear 10 times more details about HBP. But if during the first interaction the doc would say “I don’t know if you really have high blood pressure though. Just in case maybe you could read the following information about HBP” and then give me some URLs like the Medline Plus entry or this one: http://www.ash-us.org/about_hypertension/index.htm. I think it would definitely prepare for a much better interaction the next time I saw the doc. In fact in case of diagnosis of HBP or changes of BP, I would definitely advocate for this method followed by a second visit not too long after. That is basically what my PCP does with me, whenever there is a change in BP. Follow-up in 1 week/10 days.

Ted: [It turns out that checking throughout the day isn't really helpful, twice a day is best]

Gilles: That’s good to know. I didn’t know. This is not trivial info and is not easy to find if you are actively looking for it. But it should definitely be part of BP home monitoring guidelines. If you check http://www.medicinenet.com/script/main/art.asp?articlekey=89718 you will notice no mention of what you just told me.

Ted: Let’s say your blood pressure was high this way. If the doctor said, “I would like to have you be in charge of checking your blood pressure, once every 3 months, for just one 7 day period, twice a day.”

Is this a routine you would be willing to follow?

I do not understand. You mean choose randomly a week during this 3 months window and get 14 basic readings as a result?

I would probably freak out, wanting to get feedback about the results ASAP.


Ted: What if the blood pressure cuff didn’t come from your doctor – what if your employer came to you and said, “For our employees who have high blood pressure, we are going to give them free cuffs to allow them to connect to their doctor.” Do you think this would or would not be a good way to change the ideas about measuring blood pressure, from a privacy perspective?

What if the messages about blood pressure being harmful came from your employer too – would this be welcomed, or would you think, “this is really something I should only get from my doctor?”

Gilles: I am certainly not an example for this. I would certainly distrust any involvement of my employer in health matters.

Ted: Last question – is this discovery, that BP was important to you, something you needed time to make, or do you think you would have made a change sooner if the initial conversation was different?

I think the conversation was not optimal at all. He is a real friend and a great doctor but evidently not the greatest communicator. But the conversation about learning about HBP and developing knowledge about it could very well be done by a trained nurse assistant. I strongly believe that instead of immediately treating it would have been much better to give me a solid dose of info RX. I am sure that I would have been early on a much more compliant patient.


Ted: I looked up what I know about time of day for blood pressure for you – I don’t have an accurate answer about apnea, but it appears that “morning” and “evening” have been selected because they correlate best with the possibility of stroke in the future, actually better than what your doctor would measure during the day.

I found this as well

“In persons successfully treated with CPAP, cessation of treatment causes blood pressure levels to increase, while restarting treatment causes blood pressure levels to fall again.”

from here:

http://www.aafp.org/afp/20020115/229.html

I think your presence will be very helpful next week.

Gilles: I don’t think I would have found this great article. So here is a clear example of how a 2 minutes interaction between a somewhat informed patient and a physician can produce real results. My family has a real history of apnea and I am convinced that there is a real connection. The input from a physician becomes more and more important as one starts to ask precise questions about the potential reasons for the HBP. Yes the internet is great but we all know there is a limit to the benefits. At some point the filtering done by an expert becomes fundamental. Maybe the internet has just shifted the level at which the filtering does occur.

Clinical and Public Health pearls (Houston-Miller and Eytan)

  • Patients are at risk for non-persistence and poor control if they have less than 1 health care visit per year or do not have blood pressure in the last 6 months.
  • The overall US control rate is 36.8%; The Healthy People 2010 goal is 50%.
  • This translates into 10.7 million Californians, with 3.3 million with controlled hypertension, a gap of 7.4 million people. (source)

Comment

Where is the data? and What’s Missing? From the conversation above, it appears that there isn’t good understanding about how to monitor blood pressure from home, either on the part of patients, or on the part of the medical profession. Prior to reading the AHA position paper, I did not know that a protocol existed for doing this accurately, and I would gather that most physicians that recommend home monitoring do not provide the guidance that is recommended by the American Heart Association, or desired by our patient.

The impact of this is that a patient may not monitor at the right times or with the right technique, resulting in changes to therapy that are inaccurate. In terms of what’s missing, without clear guidance from a physician besides, “Come in to see me and we’ll check it in my office,” the guideline or protocol is implicitly stated that blood pressure measurement is a physician-centric activity, even if the physician recommends home monitoring.

I of course welcome counter arguments to this hypothesis!

To close things out on the current state of affairs, here’s a slide show of all the pieces put together. Go through them as a group and notice where the data is in each case. Is it localized to the patient? Is the patient supported in engaging in the management of their condition outside of the medical office visit? And what about the stakeholders that are represented but not participating – the connectivity providers, the social networks. Can or should they be involved?

Final question: Should this current state continue? (Loaded question. Hint: Look at the results we’re getting with this approach)

Patient Online Access in the Safety Net: Hilary Worthen, MD’s Slides

August 24th, 2008 | Popularity: 27%
0 comments | Leave a reply

“If you don’t like the news, go out and make some of your own” – this was the theme of the presentations given by safety net organizations who are innovating by providing patient online access to their personal health information. It’s now possible to talk to safety net providers who have the technology and the skill to provide this type of access for their communities. This is great news.

Hilary Worthen, MD, visited us in person in Oakland, when we had this discussion , to describe Harvard-Affiliated Cambridge Health Alliance’s patient portal. CHA is using the MyChart patient access system, produced by Epic Systems, Inc. Here are his slides. Comments welcome.

Patient Online Access in the Safety Net: Ted’s Slides

August 21st, 2008 | Popularity: 26%
0 comments | Leave a reply

I am attaching the opening remarks that I made, alongside Veenu Aulakh, at the Patient Online Access in the Safety Net discussion, hosted by the California Healthcare Foundation. It describes the “why?” in the context of my journey of discovery. Click on any image to see full size, and comments are welcome.

Update: Incidentally, depending on the reviewer, I am either congratulated or questioned about my presentation style. I just ran across this very nice slideshare : Death by Powerpoint . See if the slides below are more similar to that ideal (I hope they are)

Sheraton Palace Picketing — Palace Hotel and Hall of Justice

August 20th, 2008 | Popularity: 25%
0 comments | Leave a reply
  • Sheraton Palace Picketing — Palace Hotel and Hall of Justice – As I sit here working to design a pilot for connecting Californians with chronic illness to their personal health information. It's incredible to walk these halls and think about what happened here 44 years ago. Now, we're doing the same work, in the digital sphere. Every patient deserves to have online access to their care system, insured or not.

Patient Online Access in the Safety Net

August 19th, 2008 | Popularity: 46%
2 comments

I admit, that maybe, once or twice in my past, I may have used convening and convener in less than flattering terms, much like I used to use “process” in unflattering terms. I learned through LEAN, though, that process isn’t bad, bad process is bad. And so I have learned the same thing about convening, now that I have done it a couple times this summer, with the California Healthcare Foundation.

The most recent time was yesterday, when Veenu Aulakh, MPH, and I brought together Safety Net health care organizations, and national experts in patient online access and social impact of the Internet to talk about (you can guess…) “Patient Online Access in the Safety Net.”

These being the first convenings I have co-led, rather than participated in, I have learned a ton, and have gotten a good understanding of doing this for a purpose, which both situations have had. In the event we hosted yesterday, in Oakland, I put together an A3 document before we invited anyone, which included the background, the goals, and most importantly, the “why?” we were doing this in the first place. It was really helpful to have created agreement around the “why?” – I referred to this many times in the planning.

At the event itself, I got a new perspective that I had not had as a participant previously. It was one of listener/observer – even when I was doing the talking, I was interested to see reactions and learn what people and organizations are capable of. It made me think that when I have been a participant in convenings in the past, this is what my hosts were doing – learning what myself or my organization was capable of doing to solve a problem, as much as they might have tapped me as an expert. Interesting to have this happening in my brain.

Sharing information happened, too, courtesy of some of the most innovative organizations in the U.S., including Cambridge Health Alliance, University of California, San Francisco’s Positive Health Program , New York’s Primary Care Information Project, Institute for Family Health, and Kaiser Permanente.

In addition to all of this, there were a few nice moments of recognition for people’s work, such as when Jim Kahn, MD, thanked Kate Christensen, MD, and her team at Kaiser Permanente for their support and assistance in the launch of the myHERO patient portal for HIV patients cared for at San Francisco General Hospital.

…and a little something for me, a follow-up conversation with Hilary Worthen, MD, from Cambridge Health Alliance, about his study and pathway to discover and implement LEAN in primary care at CHA. He told me that for him, this is a transition from thinking about exam rooms and staff to “work that you need to get done, defined by doctor and patient.” I love hearing about how people apply their creativity and copy the thinking of LEAN to do exceptional things for their patients.

This being the second time I have done this, I don’t know if it was perfect. We tried a lot of things I’ve not done in meetings before, and I am still working to integrate social media before, during, and after. I am definitely sold on my philosophy of supporting any and all technology use (“if you need or want to use your device, use it”) - I have not, in my conveningness, come around to the “turn your devices off” philosophy, as I have written about previously.

Oh, and I learned that a 60″ table seats 8 people.

Here are a few images from yesterday. I’ll follow up with my slides in a separate post. Click on any to see larger size.

Now Reading: Pew Hispanic Center’s Hispanics and Health Care in the United States

August 17th, 2008 | Popularity: 40%
0 comments | Leave a reply

Tomorrow I will be in Oakland, California, along with health care leaders from the California Heatlhcare Foundation, California Safety Net Organizations, National Leaders in Patient Online Access in the Safety Net, and other national leaders in the social aspect of the Internet for Americans to talk about patient online access in the health safety net. It promises to be a very interesting day, which I’ll post about here.

The referenced report is one of two recent studies on the impact of the Internet among Latinos in the United States, and among all Californians (next post). They are both timely and useful as we answer the question that I was asked many times while visiting Safety Net medical centers: “Are our patients online?”

Pew Hispanic Center Report: Hispanics and Health Care in the United States: Access, Information and Knowledge

This report describes research performed jointly by the Pew Hispanic Center and Robert Wood Johnson Foundation, and consisted of a bilingual telephone survey of a nationally represented samle of 4,013 Hispanic adults conducted from July – September, 2007.

Highlights from my review

  • 27 % of Latinos report having no usual care provider, the rate is 42 % for those without insurance.According to the CDC, the proportion among Hispanics is more than double that of non-Hispanic whites and non-Hispanic blacks.
  • Language differences are significant: 24 % are English dominant, 35 % are bilingual, 41 % are Spanish-dominant. This has significance with regard to the Internet….only 17% of Spanish-dominant Latinos receive health information from the Internet, compared to 53 % of their English-dominant peers. Interestingly, those of South American descent report a 51 % figure, higher than the figure for Puerto Rican (49%) and Mexico (31%).
  • Fleshing the language issue a bit more: 40 percent of those who get health information from the television get it from Spanish-language stations. For those getting information from radio, 47 % rely on Spanish language radio stations
  • Youth is a factor: 42 % of those aged 18-29 get health information from the Internet.
  • Overall, 35% of Hispanics get their health information from the Internet, far behind television (68%), radio (40%), or a doctor (72%)
  • Also of interest to me is in the demographics of this population, younger than their non-Hispanic cohorts, and with lower rates of chronic disease today (20 % with high blood pressure, compared to 22.4 % Non-Hispanic White, 31.6 % Non-Hispanic Black)
  • And….in terms of health seeking, 41% said the reason they did not have a regular health provider was because they are seldom sick. The impact? Only 62 % of these individuals have had their blood pressure checked in the last 2 years.

What impressed me overall was the impact of language – it reinforces what I saw from my observations way back in November 2007:

Key health care leaders are saying the time for PHRs are now. Based on the Boston visit, I am saying the time for multilingual and culturally relevant PHRs is now.

Obviously, I still believe that, and this is why I am especially excited that one of the organizations presenting to us today is Cambridge Health Alliance (see information about my visits with CHA here), who have launched their personal health record to a population that is predominanly portuguese-speaking.

Without parity in access to quality health information, the concern is that the dependence on the in-person interaction with the health provider is greater for Spanish-dominant individuals than for English-dominant, and therefore the risk is greater that needed preventive care will not happen if they do not have a usual health care provider. The data appear to bear this out. It is worth thinking – if you did not have your blood pressure checked in the last 2 years, how would you be able to reassure your family about your ability to provide for them with a healthy heart? Should these individuals wait for their organs to be damaged, or should they have an equal chance at providing for themselves and their families with healthy hearts, brains, and kidneys? Thank you to the Pew Hispanic Center and Robert Wood Johnson Foundation for informing these questions.