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NEW MEMBERS: Summer ‘17

Welcome new member, Geoffrey Milos! Geoffrey writes that he has a great interest in electronic health records (EHR) and how they enable individuals to more fully participate in the management of their own health care. Patient access to their respective, complete EHR is key to this empowerment. Individuals seem to be making progress on this front, slowly but surely. Geoffrey is interested in active innovators in the personal health care application space, specifically applications that can accept provider-sourced EHR inputs and other organizations that actively promote individual access to EHR data. If you fit either of these areas, email Geoffrey at

We welcome Supten Sarbadhikari, who holds a medical degree from the University of Calcutta, India, and Ph.D. in Biomedical Engineering from IIT, BHU, Varanasi, India. Dr. Sarbadhikari is leading a project of the Ministry of Health & Family Welfare, Government of India, as the project director for the Centre for Health Informatics of the National Health Portal (NHP). He’s an expert adviser for the ELAG (e-Learning Advisory Group) of the Systematized Nomenclature of Medicine-Clinical Terms team. To learn more about Dr. Sarbadhikari’s areas of expertise, please visit his homepage

A warm welcome to Burt Rosen! Burt leads marketing for HealthSparq, a company whose mission it is to help people make smarter health care choices. Notable HealthSparq initiatives include #whatthehealthcare and #WTfix. Burt writes, “That’s why I joined S4PM, to put the focus in health care back on people where it belongs.” Burt is a “people first” person who believes that the only way we can really fix the health care mess is by having people take control and having the industry listen to those it is supposed to be helping.

Hello to Ken Masters, an assistant professor of medical informatics at Sultan Qaboos University (SQU), in Oman! Ken teaches medical informatics to undergraduate medical and laboratory science students.  Part of that teaching involves teaching about the e-patient.  Ken most recently published the AMEE  (The Association for Medical Education in Europe) Guide to Preparing medical students for the e-patient. Here is a shortened version of the longer stand-alone version, which will follow in the near future:  (

Welcome to new member, Grace Cordovano! Grace is a private cancer patient advocate who assists patients from point of diagnosis through survivorship or end-of-life care planning. Her advocacy work entails navigating a diagnosis through the healthcare system while also being dedicated to the continuous improvement of the patient experience. She is currently working on an initiative to revamp medical education by revising curricula to include patients and care partners in the design, development, and delivery of medical education. Here is a letter she penned, an excerpt of which was recently featured on KevinMD, which was sent to the American Medical Association and is currently being disseminated to medical schools across the country by Grace: Interested in learning more or collaborating on revamping medical education? Email her at Grace is thrilled to be a part of the newsletter team and is looking forward to meeting and working with all of you!

Howdy to Claire Snyman! Claire is a brain tumor survivor and advocate. After her surgery, she started to question the role of quality of life (QoL) in patients with the rare, non-malignant, brain tumor she had and started a study with her online support group. She approached her neurosurgeon and care team at Johns Hopkins Bayview Medical Centre, and they decided to collaborate on a new study with a few scientific measurement tools to measure QoL. Participatory Medicine at its best! Through the collaboration they published the largest study to-date on this type of brain tumor especially on the topic of QoL.  She is currently kicking off a new study on glioblastoma brain tumors at the Mayo Clinic focusing on QoL with the same study objectives. Claire is keen to learn from the members here at SPM and to connect!

James Skinner, a veteran of the insurance arena, a cancer survivor, and brain tumor patient, has been busy with exciting work to share. As the creator of a smart patient academy with the intent of speeding up the learning curve for patients and caregivers by documenting what the most resilient patients in the world do, James is eager to introduce The Playbook for High Performance Patients & Caregivers send any feedback to Jim through SPM Connect.

Hello to Michael Robkin, a healthcare strategy, information technology, and business development consultant and executive. Mike was a founder of the Continua Health Alliance (now HIMSS Personal Connected Health Alliance). Previously he was the most senior Enterprise Architect for Care Delivery at Kaiser Permanente IT. Since then he has led large research and product development efforts in clinical data integration, patient safety, and cybersecurity. Mike joined SPM because he believes genuine, lasting change to the most urgent issues facing healthcare must come from with those who have the most at stake – patients.

MEMBER NEWS: Summer ‘17

Liz Salmi, a SPM member since 2015, has recently started a new endeavor working with OpenNotes, a national movement encouraging doctors, nurses, and other health professionals to share the notes they write with the patients they care for to improve the quality and safety of care. If anyone is interested in connecting with her about the work being done at OpenNotes, please email her at She is always looking for stories about people who are petitioning their health systems for easier access to clinical notes.

Jeanne Pinder, Clear Health Costs, is seeking someone who is savvy in the insurance space to speak knowledgeably about how insurance contracts are negotiated and related issues – such as why the insured rate increasingly seems to be higher than the cash rate for some providers and procedures. Are you an insurance expert or have a great contact that would be a great fit? Please contact Jeanne through SPM Connect.

Lyubov Lytvyn is a researcher who’s worked with members of MAGIC on a couple of projects before, and is wondering if anyone is interested in joining them as a patient partner on a guideline panel for ANY OF THREE upcoming topics:

  1. Using antibiotics for skin abscess. More information:
  1. Colorectal cancer screening for men and women aged 50-75. More information:
  1. Prostate specific antigen screening for men aged 45-70. More information:

Perks? Being part of a guideline team from start to finish, and authorship. Who are we? MAGIC, a nonprofit international research and innovation group, partnering with The BMJ:

Jonathan Wald would like to share information about a 1-day conference in Crystal City, VA, on October 3, 2017, that is open to both professionals and patients/consumers with an interest in how to promote and advance patient safety and evidence-based decision making in care through clinical decision support (CDS) used more broadly among EHRs and other health information technologies.
AHRQ (Agency for Healthcare Research and Quality) is sponsoring a project conducted by RTI (Research Triangle Institute) to establish a community of interested stakeholders in this area of clinical decision support. The focus of the October meeting is to bring together individuals to share best practices, identify challenges, and learn from one another.  Please see this link for more information, and to register if interested.

Michael Robkin would like to share information on The Connected Medical Device and IOT Security Summit, November 8 – 9, 2017 at the Best Western Plus Hotel and Conference Center, Baltimore, MD. SPM is an official supporting organization of the Summit, and SPM members will get a 25% discount (please use Discount Code 36 when registering). Register by September 29th to receive an additional $100 early bird discount. SPM President Joe Ternullo will moderate the wrap-up panel. The summit agenda goes beyond the usual technical aspects of cyber security and will explore the dark economy of ransomware, the unique challenges facing the healthcare industry, and the impact of data breaches on patients and patient care. Mike is seeking a patient or patient advocate who would like to speak to cyber security, privacy, and/or their impact on safety, trust, and chttp://mikerobkin@gmail.comare.  Please contact Mike for the discount code or if you would like to be a speaker.

Danny van Leeuwen reports that OpenID HEART Profiles were approved this month. “Individuals want the ability to gather, control and share their health data. Increasingly, this data is sourced digitally, such as from smart devices and mobile apps, and may be stored in electronic health records. The more complex a person’s health conditions, the more likely the sources of data will grow. Many people want to be able to give permission to anyone who has access to that data, and they want to be able to change their minds over time.

Clinicians, insurers, researchers and others want or need health data to diagnose, plan care, pay for care and additional reasons. In some cases, they have achieved success in exchanging electronic health data by basing this exchange on standards. However, patients’ desires to control data-sharing have taken a back seat. HEART puts the individual back at the center of the health data-sharing conversation. The group has developed five specifications, based on the existing standards Fast Healthcare Interoperability Resources (FHIR), OAuth, OpenID Connect and User-Managed Access (UMA).“ (from OpenID HEART WorkGroup charter)

Danny joinedd the OpenID HEART Work Group at the invitation of SPM member Adrian Gropper because people at the center of care (individuals, parents, caregivers, clinicians, support staff) need HEART’s work to be successful. Danny’s always surprised by the interest generated among his readers ( of posts about health data. He’s daunted as a HEART participant because he only graduated from understanding 10% of the conversation when joining HEART 18 months ago to understanding 25% now.  Other members have been respectful of Danny as a patient and answer his questions readily when  asked. Although his technical understanding is limited, he still think the work is critical. He doesn’t think it goes far enough – it’s necessary but not sufficient. People need more dynamic electronic exchange of care planning data, but that’s another day’s discussion.

In August, the OpenID Foundation voted to approve five use cases:

Most people at the center of care don’t know about the OpenID Foundation or OpenID HEART.  They should. OpenID would benefit from a wider connection to lay people.  After all, we’re the end users. You can learn more here.