A clinical trial in Kenya confirmed that human kindness is the secret ingredient to health and mobile phones are an ideal delivery system. Well, that’s my interpretation.
Here’s the gist:
Taking your meds is essential to maintaining your health when you live with a chronic condition. People know this, but they need help doing it. They tend to tune out reminders – constant texts become more of a nag than a boost, studies show. Instead, people respond to empathy — in this study, a single word, texted once a week: “Mambo?” which means “How are you?” People who texted back that they were not feeling well received follow-up phone calls to see if clinicians could help them get back on track.
Below is a guest post by Suzanne Mintz, founder Family Caregiver Advocacy about a summit where patients and caregivers were an integral part of the healthcare redesign process. More and more you will see us featuring meetings and conferences that include patients and asking others to include patients and caregivers. Suzanne is a social entrepreneur, family caregiver thought leader, author, speaker, advocate. 20 years ago she put a face on the issues of family caregiving when they were not recognized outside the aging community.
She co-founded the National Family Caregivers Association (now Caregiver Action Network) and led the charge for recognition of family caregivers across the lifespan and as critical players in the delivery of chronic illness care. She retired from the organization in June 2013 and now runs her own consultancy: Family Caregiver Advocacy, where she focuses on issues of national importance that affect the health and wellbeing of family caregivers. Ms. Mintz is currently working on the need to have family caregivers identified on medical records, their loved ones’ and their own. Quote: “Family caregivers need to be included as members of their loved ones’ care team, given the education, training, and on-going support they need to bring about better outcomes and their own health and wellbeing.
The Summit on Identifying Family Caregivers (FCG ID) on Medical Records held October 25th in Washington, DC brought together patients, caregivers, doctors, researchers, advocates, scientists, HIT professionals, health systems, insurers and others, 40 plus participants in all, to determine how best to incorporate family caregivers into electronic health records as members of their loved one’s care team with the goal of helping family caregivers improve patient outcomes and increase their own wellbeing.
This was a working meeting, the opening, and only, presentation reported on the results of a detailed environmental scan that was prepared specifically for the meeting. The meeting confirmed the common belief that family caregivers are not commonly identified in the American healthcare system. Their names may be listed as next of kin or emergency contacts on a person’s EHR, but there is no record of the work they do to care for and treat their loved ones, and their own doctors, if they even go to one, are not aware of the extent of their caregiving responsibilities.
Attendees learned that family caregivers provide 87% of the long term care needed by persons with chronic conditions and disabilities, and 46%, almost half, of them provide medical and nursing services. Despite the extent to which family caregivers are embedded in the provision of chronic illness care there is no formal record of their existence, let alone the specifics of the care they provide.
As a group the healthcare providers and other professionals discussed the people, processes, and technology issues that would be involved in identifying family caregivers on health records. They broke into conversational groups of two to three to continue their discussions on a more individual level and then reconvened in five groups to propose ideas and mechanisms for implementing FCG ID.
The most intriguing idea proposed was that medical (health) records be redesigned so that they are more than repositories for work done under CPT codes and records of how medicine is practiced today, but rather be the infrastructure of where the practice of medicine is moving. If the patient and family are to truly be at the center of care, and their goals become their health providers’ goals too, then the electronic health record could serve as the enabler of both documenting and measuring progress of evolving care plans.
Next steps are the posting of the environmental scan and a brief recap of the meeting on the project web site to be followed by a more detailed narrative report that will be distributed widely. Additional research will be done, the outlines of a pilot project developed, and interested attendees and others will have the opportunity to participate in the on-going work.
The meeting was convened by Booz Allen Hamilton, the Coalition to Transform Advanced Care (C-TAC), Kaiser Permanente, and me (Family Caregiver Advocacy) and held at the Kaiser Permanente Center for Total Health.
Sponsors were Americas Health Insurance Plans (AHIP), Booz Allen, Care Innovations, Dana Farber Cancer Institute, Kaiser Permanente, and United Healthcare.
Any of us would probably have paid to be at the gathering of over 1000 medical school deans, faculty and residents at last week’s American Association of Medical College’s (AAMC) meeting to hear Anna Quindlen deliver her speech, Healthcare in an Age of Information: How Doctors, Nurses and Consumers Can Make One Another Better. [Her speech is available until 12/3/2013. Not sure about access after that.]
Quindlen, a Pulitzer Prize winner and best-selling author, gave the Jordan J. Cohen Humanism in Medicine Thought Leader Session at the AAMC annual meeting, sponsored by the Arnold P. Gold Foundation. According the this foundation, these lectures “feature prominent speakers on topics related to humanism and medicine”.
Every participatory medicine advocate should read it and put it in their Important Documents for All of Time. Her powerful words and stories got to me, and I wasn’t even there. I would liked to have seen the faces of everyone in that room. Were they listening, really listening, to hear what she was trying to say (her primary message)? Did they recognize the distinction between how simple her message was, and the magnitude of its impact? Did they understand that health care is just another part of society – like journalism – that must embrace social change or implode?
I can’t do justice by summarizing her speech, but offer some of her comments to provide a glimpse of their import:
As she shares her story of two surgeries with very different experiences, she implores clinicians and the healthcare team to answer the question,
“Do you know anything about me?”
When they go about their work and don’t seem to care or to notice who she is and what she wants, she describes a sense of feeling like they’ve
“..lost their mind, or lost their way”.
Quindlen gives us great personal insights talking about her father’s tragic injury. The professionals caring for him and the family were fully attuned to their needs, offering high-touch, meaningful care. They listened, they noticed, they asked and listened again.
To the meeting audience, she offered elegant recommendations:
- try to be present in the moment
- acknowledge uncertainty
- practice empathy
- try to be kind
She also paints a parallel between medicine and journalism. In news, changes in consumer information seeking created greater sharing and dissemination. There’s been a shift of power in who holds information. She sees the surge in quick clinics and DIY care as responses to changing consumer/patient needs. She believes healthcare needs to use the same digital tools to shift the power and provide services that are wanted.
Thank you, Anna Quindlen, for a landmark essay about participatory medicine.
7:39 a.m. ET – The European Charter of Patients Rights was described in a stimulating presentation by Mariano Votta, director of the Active Citizenship Network. My post is here. They view being an active empowered patient as just part of a being an active, empowered citizen. How great is that?? (In our view at SPM that’s kind of obvious, but you don’t hear it discussed much, anywhere!)
And naturally, being active and empowered in anything requires access to the relevant information – another them of SPM.
This is our monthly introduction to e-Patients.net, blog of the Society for Participatory Medicine. Follow the Society on Twitter (@S4PM), Facebook, and LinkedIn. Here’s how to become a Society member, individual or corporate.
- This blog is e-patients.net. Subscribe via RSS or email, tweets etc.
- Our open-access journal is the Journal of Participatory Medicine (Twitter: @JourPM)
“Participatory Medicine is a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.”
- Our manifesto: the e-Patient White Paper (PDF), in English and Spanish
- The Society’s member list, board and officers, and member listserv archives (members only)
- Our founders
- Guidelines for submitting guest posts about participatory medicine, for this blog
- Author guidelines for submissions to the Journal of Participatory Medicine
- Wikipedia pages for participatory medicine and e-patient
- Volunteering: volunteer@
- Blog: email@example.com
- As a Society blog, we do not accept unsolicited guest posts from non-members. See our Guest Posts page.
- General information: firstname.lastname@example.org
And in this time of critical change, as medical record systems roll out, the November cover story by Senior Editor Diana Manos is all about patient engagement through the medical record. This is terrific news, because now is the time when systems are being configured and policies are being set. And two things I love are at the core of the article: SPM people, and the OpenNotes project, which we’ve often written about here.
The subhead says “What happens when patients get involved? Better outcomes.” SPM co-chairs Dr. Danny Sands and I are shown, as is SPM health policy chair David Harlow. Also shown and quoted are the principal investigators of the OpenNotes study, Jan Walker RN MBA and Tom Delbanco MD.
Colorful graphics highlight key findings of OpenNotes, which all boil down to this: People perform better when they’re informed better. And contrary to some expectations, patients do not freak out when they see what the doctor wrote.
You can read the article and the entire issue online now, and download to PDF. (Bonus: page 37 is an “exit interview” with Farzad Mostashari, the outgoing leader of HHS’s health IT office ONC.) The print edition should be delivered next week.
For new visitors to our site, here are links to previous OpenNotes posts:
- The study begins – June 2010 (including the Seinfeld episode where Kramer impersonates a doctor to get Elaine’s chart)
- The results, Oct. 2012
- All posts about OpenNotes, with interim findings and how it’s rolling out.
Here are screen captures of the other pages:
A cross-post from susannahfox.com…
On Friday, I spoke at the Albert Einstein College of Medicine, along with Kevin Pho, MD. During a planning call, the symposium organizers had shared results from a faculty survey: Fully two-thirds do not use social tools on a regular basis. Asking them, therefore, to spend a half-day learning about social media was a pretty bold request.
Inspired by Kathy Sierra to focus on the users’ (that is, the audience’s) needs, I began with a question that many busy clinicians might be asking:
How do we know that social media is important to health care?
Why should they take anyone’s word for it? Where is the evidence?
Meaningful Use Stage 2 includes the requirement that health care providers with EHRs seeking Meaningful Use incentive dollars demonstrate that 5% of patients actually view, download or transmit their data.
The HIPAA/HITECH Omnibus Rule, which is now fully in effect (though the enforcers of the rules are “nonessential” and not on the job during the current government shutdown), empowers patients to request their health care providers to deliver their records electronically in a format of the patient’s choosing (so long as that is reasonably doable by the provider).
Taken together, these two regulatory levers hold promise for better patient access to records, and to the usability of those records for individual patient care and for broader research purposes, too.
As we lumber down this road, I would like to bring to your attention a presentation I gave a couple weeks ago at the StrataRx Big Data in Healthcare conference, promoting the idea of the “rainbow button.” Here are a couple of links: my rainbow button presentation and livetweets; some follow-up press coverage on CIO.com that captures some of what I said.
A Powerful Union
Guest blogger Janice McCallum shared her interview from the StrataRx conference. Janice McCallum is a health data strategist at Health Content Advisors. Her blog and tweets (@janicemccallum) reflect her focus on the value of information to all healthcare stakeholders and the importance of patient access to information. She has been a member of the Society for Participatory Medicine since 2009.
In 2007 and 2008, I organized an event called Health Content with my partners at the InfoCommerce Group. Our objective was to highlight how the digitization of healthcare information used by all stakeholder groups would affect the healthcare industry. Health Content covered topics such as Bringing Together Content with Tech, Healthcare Quality Metrics, Price Transparency, and Personalized Medicine. Needless to say, we were ahead of our time.
Fast forward to the present and O’Reilly Media’s StrataRx conference, which is described in part as “a unique forum bringing together the diverse communities driving innovations in big data analytics for healthcare” is filling the gap left when we discontinued the Health Content conference. A lot has happened since 2008. For one thing, the term “big data” wasn’t an overused term back then! Also, huge advances have occurred in genomics and personalized medicine, including significant cost decreases for sequencing genes. Furthermore, adoption of electronic health record (EHR) systems has experienced strong growth in large part due to federal incentives. It all adds up to major new sources of data and opportunities for new uses of health data.
But, we’re still struggling with how to define acceptable methods for exchanging data and providing the right kind of incentives to reward people who add value to data.
In the interview below, I talk with Andy Oram of O’Reilly Media about my observations from StrataRx.
If the video above does not work, please use this link http://www.youtube.com/watch?v=POPlhMXysYQ&feature=youtu.be
A couple of outtakes:
- We’re relying too much on old business models for health data exchange
- We need to remove information asymmetry barriers between providers and patients
- Patients can provide more than just data; they can provide insight into what the data means in the context of their own health.
In short, we’re at the early stages of realizing the value of health data and there remain a lot of privacy, access, and other business model details to work out.
See: StrataRx for more video coverage of the event.