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engagement | Danny van Leeuwen Health Hats - Part 6

Magic Lever – Tracking Health

By Caregiver, ePatient, Consumer No Comments
Today, the Pew Internet and Life Center published a report, Tracking for Health (link here). In previous posts, I’ve said that keeping track of symptoms and goals is a magic lever for me in managing my health. I keep track on a spreadsheet of walking, triking, playing my saxophone, sleep, and my weight. It helps me maximize my activity and music and keep tabs on my weight and sleep. While tracking seems a good thing intuitively, this report provides the evidence.

According to the report, 69% of U.S. adults track a health indicator like weight, diet, exercise routine, or symptom. Of those, half track “in their heads,” one-third keep notes on paper, and one in five use technology to keep tabs on their health status. Trackers can monitor for themselves or for those they take care of. It makes sense that more people who report chronic conditions track than those who don’t:
  • 19% of U.S. adults reporting no chronic conditions say they track health indicators or symptoms
  • 40% of U.S. adults with 1 condition are trackers
  • 62% of U.S. adults with 2+ conditions are tracker

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Electronic Medical Record Design Challenge

By Advocate, Caregiver, ePatient, Consumer 2 Comments
The Office of the National Coordinator (ONC) of Health Information Technology (HIT) – part of the Department of Health and Human Services (HHS) announced the winners of the Electronic Medical Record (EMR) Design Challenge. See the winners here. The design goals included:

  1. Improve the visual layout and style of the information from the medical record
  2. Create a human-centered design that makes it easier for patient to manage their health
  3. Enable health professionals to more effectively understand and use patients’ health information
  4. Help family members and friends care for their loved ones

The categories include best overall design, best medication design, best problem/medical history, best lab summaries, and designs that challenges the judges. All amazing and artful. Take the time to at least scan the possibilities and compare to the EMR(s) you use.

I’m excited. Design is huge. These designs stretch my idea of the possible. Thank you ONC. However, I’m hesitant to get too excited. While design and format are necessary and important links in the chain for usable EMRs, they are not sufficient. The people with complex chronic diseases are heavy users of EMRs, often with multiple EMRs that don’t talk to each other (interoperability). I have info in 3 EMRs. Can these designs handle complex health issues? What is the bidirectional nature of these designs? Can e-patients and caregivers enter information and correct information? I would also like to hear more about how the winners involved patients and caregivers in the design? How will the designs adapt for non-English speakers? Will these designs help the relationship/communication with clinicians? Let’s follow this and see how these designs are implemented. Let’s look for the design backstories.

Just-in-Time Decisions

By Advocate, Caregiver, ePatient, Consumer No Comments
  1. Is there a chance that focus beam brain radiation will make a difference to quality of life for a terminal patient?
  2. Will the treatment prescribed (any treatment) cause depression?
  3. Will acupuncture make a difference?
  4. Will all this attention to one family member negatively impact the other members?
  5. What do I do when my doctors disagree?
  6. Can we afford…
Making a decision based on evidence at the time decisions are needed is a challenge for e-Patients and e-Caregivers. Participating in PCORI (Patient-Centered Outcomes Research Initiative) and S4PM (Society for Participatory Medicine) heightens my awareness of the importance of evidence for decision-making and the misalignment of much evidence with the decisions facing e-Patients and e-Caregivers. The medical model of research favors a focus on body parts, diagnoses, and medical treatments. The dissemination of that research favors positive results and academic journals. No access to what didn’t work. Need to rely on advocacy groups and social media for readable and understandable evidence. Recently, several of us made a proposal to the PCORI Board in Boston:
Expand the scope of fundable research questions to include non-diagnosis related questions:
  • Identify mechanisms and key success factors of patient-professional partnerships, patient engagement (actions individuals must take to obtain the greatest benefit from the health care services available to them), care coordination, shared decision-making
  • The impact of peer-to-peer (patient-to-patient, family-to-family, caregiver-to-caregiver) relationships
  • The impact of social determinants (conditions in which people are born, grow, live, work and age, including the health system) on best health
What do you think? What are the magic levers for this change?

So Many Decisions

By Caregiver, ePatient, Consumer No Comments
So many decisions to make in the journey toward best health. Should I take this medicine, should I have that surgery, should I stay home from work, should I worry, should I use a cane, should I tell my employer or my spouse, should I  eat this, should I buy that insurance, should I see both doctors on the same day, and on and on and on. Clinicians and e-patients approach decisions so differently. For clinicians its studies published in academic journals that show an increased likelihood that x works better than y for a specfiic population. It’s habit and common community practice. For e-patients it’s often spur of the moment decisions, trusting someone. It’s about me.

Yesterday, I attended the Board meeting of PCORI (Patient-Centered Outcomes Research Institute).  I wrote about PCORI in a previous post. PCORI could transform some research about health. See the notes of the meeting  here. A group of e-Patients made three recommendations to the PCORI Board in the public comment period:
The PCORI Board addressed the challenges of being patient-centered several times in their deliberations. They asked, what is a patient? Is it someone who is sick or caring for someone sick? What about the well – the worried well, or those preventing sickness?  Should patient engagement in research mean that patients should speak to each other in patient advisory groups or should they foster melding of the silos of patients, researchers , advocates, vendors, and providers? How should they foster and hear advice from patients? What projects should they prioritize that are most likely to impact patient engagement and experience?
So many decisions to make in the journey to best health.

Patient Centered Outcomes Research

By Advocate, Caregiver, ePatient, Leader, Consumer 5 Comments
I attended the PCORI workshop in DC last weekend. Congress authorized PCORI The Patient-Centered Outcomes Research Institute (PCORI) to conduct research to provide information about the best available evidence to help patients and their health care providers make more informed decisions. PCORI’s research intends to give patients a better understanding of the prevention, treatment and care options available, and the science that supports those options. About 130 attended: patients, patient advocates, representatives of disease specific organizations, researchers, clinicians, home schoolers. PCORI aligns well with my personal mission: Increase the sense of balance patients, caregivers, and clinicians feel as they work together towards best health.
My main takeaways from the weekend are:
  1. Current research focuses disproportionately on the medical end of the health spectrum. Which therapy (mostly drugs) works better? Many participants would like to shift focus of research to the social and behavioral factors on the spectrum. Social factors are the conditions in which people are born, grow, live, work and age, including the health system. Behavioral factors include risky behavior, developing and following health plans, management of stress, pain and illness
  2. The gold standard of double-blind studies does little to help those confronting illness make decisions. As my neurologist tells me, it’s very challenging to apply research about populations to people. I am not a population. There are other models of sharing information and building on experience.
  3. Dissemination of research results is last funded and least rigorous. Many results are not published. Most patients don’t read peer-reviewed journals.
  4. The power gradient in research favors those managing the money. Rather than researchers seeking consumer involvement, communities could control the funding and seek researchers
  5. Health disparities affect communities (the unfair and avoidable differences in health status shaped by the distribution of money, power and resources at global, national and local levels). Research into health disparities can inform action by self-defined communities.
  6. The reservoir of experience, expertise, passion, and commitment of the PCORI participants is awesome, deep and diverse. I  am humbled to be included in this movement.

Consumer Engagement – Respect the Horse

By Advocate, ePatient, Leader, Consumer One Comment
I went to the Duke Wireless Health Conference (See #dukewhc for the tweet thread) in North Carolina this week invited by my friend Dr. Gopal Chopra of Ping MD fame. How to engage consumers more in their health care? As a patient, I bristled at the thought that I wasn’t  engaged in my care. They don’t know me? I understand that I’m not representative of all consumers – no one is. We are all health care consumers, we are all on a health journey. There is much variation in those journeys. I also understand that other members of my health team – my primary care doc, my wife, my kids, my mother have opinions or perspectives about how engaged I am in my healthcare. I gained weight for several years. They suggested I lose weight. It wasn’t until this past year that I engaged in losing weight and lost 35 pounds. Two points: First I’m always on my health journey. The journey just happens. Second, my ability to focus on various aspects of that journey and engage in trying to change that journey ebbs and flows. Sometimes I focus on some of the seriously annoying aspects of MS: vision, mobility, balance. Sometimes, I need a rest from it all. can’t focus at all. I appreciate being accepted by my health team as I am. I appreciate that they care about me and listen to me actively. I appreciate their support when I’m ready to tackle a particular challenge, like weight loss. Ah, there it is – a team present when ready. Hold that thought.

We have a primal conundrum – the tension between population health and individual health. The community, the industry wants the population healthier. Makes sense: it’s the right thing, it costs the community less overall, and it feeds the economy. The tension comes when individuals feel that the community knows best – how do we get the horse to drink? Do we respect the horse? How do we align these forces? Treatments, products and tools are designed for populations (its a matter of scale), but used by individuals. My takeaways from the conference are: bring products and tools to where people are (Screening kiosks in Walmarts by SoloHealth); reconnect families to reunite health teams (Family Health Networks); allow more time for caring providers to engage with their patients; engagement is not about technology – technology serves the engagement and the relationships.