As many of you have heard I have been nominated to serve on the open seat for a "consumer" voice on the Health IT policy Committee and I could use your support. (you can support more than one person btw) Policy is one of two committees that were established under the HITECH Act to advice HHS/ONC on health IT policy and standards.
When we stood up the public/private non-profit National eHealth Collaborative under the prior administration two years prior to HITECH, (which was part of the jobs bill and authorized billions for EHR adoption and appropriated another 2 billion for ONC projects) I was on the Governance Committee and the Board of Directors Selection Committee and we were able to established two dedicated seats for consumer advocates. When HITECH passed the role of NeHC shifted to the two committees and 9 of our board members moved to the new (FACA - federal advisory committees) policy and standards committees. (yes I really do follow this stuff - ;-)
Although we have had some amazing consumer representatives on the committee itself we haven't' had as much outreach and engagement with actual patients and patient advocates as I had expected. I along with people like Don Berwick know that if you are designing a patient centered health care system you need to start with the patient voice at the design and policy stages and not simply try to engage them after an expert panel develops a policy, service or technology. It is why I was asked to fill the position for the first consumer advocate at ONC when Rob Koldner was still there but which wasn't funded when HITECH passed until Farzad assumed a leadership position because he understands that patient centered design isn't a program but a core value that is foundational for all of the programs.
The recent MU proposal with a 4 day wait is another example.. As long as I have spoken out ( even in the name of my blog) I believe patients are a key member of their health care team and deserve the same access to their information in real time as anyone else on their care team (at least as much as the unit clerk on a hospital has - which is essentially everything) and the policy committee missed a huge opportunity to use health IT to move us toward that goal. I expect however that ONC will step up to the plate in the next month or so when they finalize the MU Stage 2 regs.
So I could use your letters of support for this position since it often goes to someone at an organization like AARP or the consumers union vs to grass-roots patient centered design advocates like myself. I am unique in having both real world health IT experience and rich roots in health care advocacy as well and will work to bring them both together. I am a little torn because I have worked hard to encourage true grass roots advocates to apply as well and held off on asking for support until I was sure that they had a chance to build up as much support as possible so rest assured that I will represent them as well if I am selected. You can support more than one person but I would be humbled and honored to have a letter of support on my behalf.
To make it easier for you here is a link that should pop open an email that you can customize yourself. Nominate HIT Policy - Consumer Seat (if it doesn’t work the email address is HITCommittee@gao.gov ) I also included some content about my background below since it can be time consuming to draft a letter given the short notice and May 25th deadline
Although many patient advocates have powerful personal stories I think I am fairly uniquely qualified not only as a patient/consumer advocate but as someone who has demonstrated a commitment to embedding patient centered design into technology and policy for the past six years.
1) TECHNOLOGY- Real world health IT experience - Sherry was on the team which implemented the first EHR in the US to start with a patient portal at GHC. She currently works in medical informatics on a national demonstration project for a multi-state HIE (for people who are living with mental illness) and is working on the cutting edge of health 2.0 though her work mentoring health care startups at the Microsoft/TechStars accelerator and as a frequent judge for health 2.0 contest.
2) POLICY - Extensive experience on health IT boards and committees. She was the only patient consumer to ever serve on the CCHIT for women's health; the Washington Idaho Regional Extension Center; the INHS Beacon Demonstration Project Advisory Board. She also has and continues to serve at the RWJF funded Puget Sound Health Alliance where she is a founding member of Consumer Advisory Committee and five year member of Health Information and Technology Committee. She is the director responsible for award winning advocacy program of HIMSS Washington and has been the volunteer coordinator on multiple successful political campaigns for Congress. She also represented the 300,000 people in her state who buy individual policies on the largest health care advocacy organization in Washington.
3) PATIENT CENTERED DESIGN and ADVOCACY - She has demonstrated an in-depth understanding of how to embed patient centered design as a core value into both technology and technology. While on the governance committee that stood up NeHC she ensured that two seats were dedicated to consumers; she created the first position for a consumer advocate along with Rob Kolodner when he was the head of ONC: she was the only consumer on panel at Brookings Institute with Farzad Mostashari, Aneesh Chopra and Mark McCellan on Health IT in an Era of Accountable Care; she was an invited witness before Aneesh Chopra and his panel on innovation in EHR implementations
4) COMMUNICATION - Sherry has a rich dept of experience in social media as well as traditional media. She has built a national network of advocates via social media, hosted the first tweet chat at ONC, and is a frequent speaker, panelist and host on patient centered design and is always seeking out ways to include other patients and advocates in her work.
If you haven’t already given your recommendation to someone else I would appreciate it if you would consider me for a nomination. It just takes a quick note of support. The deadline however is May 25th and if my link Nominate HIT Policy - Consumer Seat doesn't work you can just email them directly at HITCommittee@gao.gov Please of course add anything you feel might be helpful to the committee in making a decision and I am grateful for your support.
Thanks so much!
Sherry aka @cascadia