Since I stopped being an employee or a boss two years ago I’ve written annual reports for myself. I had written ones for my boss and staff for 25 years straight. I thought I’d keep it up now that I’m retired from that. Helps me be sure that my work serves my mission. With so much to do in this sick, sickness industry, it’s easy to feel disappointed and burned out. Fortunately, I’ve made a career of beating low expectations – starting with something truly disappointing and finding the small thing that can have an outsized impact by moving that something a lasting inch. I call them levers for best health. I’ve found that drinking water has the most outsized impact for best health. Anyway, the annual report helps me keep a pulse on the balance between impactful work and stoking my fires while managing my health and having fun. It’s an inspiring strange ride. Thanks for being on the ride with me. I couldn’t do it without the personal inspiration of my immediate family (Ann, Simon, Ruben, Jessica, Kate, Anica, Jacky, Leon, and Oscar) and my friends (Mary Sue, Sue, Michael, Kathy, Fatima, Regina, John, Geri, MaryAnne, and Pat).
Reflecting on 2017, Anticipating 2018
I ended 2016 with
My Note to Myself: Continue to do what I’m doing. Appreciate the small stuff (fresh running water, regular garbage pickup). Appreciate living within our means. Appreciate the warm rocks of my honey and my family. Appreciate my empathetic and skilled health team. Stick to my health and safety routine every day. Mentor bright young minds. Have fun when collaborating to do good work.
Three words: Balance. Caregivers. Onward.
Balance – Family, exercise, music, work. In that order
Caregivers – I do the work I do for caregivers – Honor the caregivers, help the helpers. We couldn’t exist without them.
Onward – Moving stuff an inch that has 10 miles to go, requires one foot in front of the other.
Overall, I’m satisfied with my accomplishments. Balance is never-ending, you’re never there. I’m in awe of the continued advocacy work ahead of us. Mostly, I’ve been a content machine – producing while I still can. Writing helps me think and then contribute while feeding and growing my social network. Thanks to the many of you who have included and educated me. The discipline of weekly blogging keeps the grey cells firing despite my MS. I started a YouTube channel. Multi-media. What a hoot! Something elsewhere I’m good enough to be dangerous. I’ve written seven guest blog posts. You can access them on my Portfolio web page. Two major publications came out this year, What Your Patient is Thinking, Learning Together in the British Medical Journal and Communication at Transitions: One Audacious Bite at a Time in the Journal of Participatory Medicine. I was interviewed on Radioactive Broadcasting URGENT CARE radio: Building a Team and Getting What You Need and Kistein Monkhouse’s #PatientOrator.
Thanks to Danny McGinnist, Jr. for creating my logo while we drove from DC to Cinderblocks in May.
- Coalition for Compassionate Care of California Annual Summit in Sacramento as an ePatient Scholar
- International Conference on Communication in Healthcare and the Health Literacy Annual Research Conference in Baltimore as a panel member and PCORI Ambassador
- Patient-Centered Clinical Decision Support-Learning Network Annual Conference in Washington DC as planner and Steering Committee member
- PCORI Annual Conference in Washington DC as speaker and Steering Committee Member
- National Caregiving Conference in Chicago as a panel member and PCORI Ambassador
- Cinderblocks in Grantsville, MD, as me
Pound for pound, dollar for dollar, the best were Cinderblocks, Caregiving, and Compassionate Care. Small, diverse participants, attendee-focused (not vendor) with practical lived experience shared.
The most fun
Collaborating with a design studio, Involution Studios, on Precision Prism expanded my mind. Design thinking for people: function AND beauty. Thanks, Juhan and Edwin.
Consulting with WEGO Health Solutions as a user-tester lets me contribute to their mission to support and grow the network of paid patient and caregiver experts.
Kayla Nelson has been tutoring me on website design and social media. What a gas! Besides a complete remodeling, I’ve added Portfolio and How Can I help You? pages. My blog/web hits have increased dramatically. In 2017 almost 3,000 unique website users (more than 75% new visitors) spending almost two minutes per view while viewing an average of two pages. Between 30% and 40% of my subscribers open and read their weekly email. I understand this is a great number. You can subscribe to my blog here. My most popular posts were Paying Patient Experts, 100th Birthday, Cinderblocks, Medical Advocacy, CMS Quality Measures for People, and Golden Rule. The most popular portfolio item was Calling All Advocates Interview with Mary Sue Schottenfels. Most people access my work through LinkedIn. Consistently more than 100 views, as high as 1,000, mostly not my followers. Jeesh.
Building on my PCORI, Communication and Dissemination of Research, adventure, I’m learning more about making choices on the health journey (informed decision-making) especially in the treatment of MS, pain management, and end-of-life.
I’m excited to be consulting with two AHRQ funded initiatives: CDS Connect and the Patient-Centered Clinical Decision-Support Learning Network. I’m committed to developing my web Resource Center (no link yet). I’m already scheduled to speak in 2018 at the Beryl Institute Conference in Chicago, the MGMA Operations Conference in Phoenix, and the International Waldenstrom’s Macroglobulinemia Foundation (IWMF) conference in Chicago. I will be a member of the Editorial Review Board for the Journal of Participatory Medicine.
My priorities for 2018: support the caregiver community, focus on learning what works as we make health choices, improve communication during transitions, advocate for patient experts, and balance for me and as always, keep blowing my horn – ONWARD!