Patient Voices at CHCF’s Chronic Disease Care ConferenceComments on: --

By: Conference Season: Patients and Caregivers Welcome | e-Patients.net

Conference Season: Patients and Caregivers Welcome | e-Patients.net — Tue, 04 Oct 2011 16:44:41 +0000

[...] at health care events, on stage or in the audience. The California HealthCare Foundation was a pioneer in this regard. Patients 2.0, an off-shoot of Health 2.0, and e-Patient Connections represent a [...]

By: The presence of patients changes public conversations about health care | e-Patients.net

Tue, 05 Oct 2010 01:14:22 +0000

[...] Patient Voices at CHCF’s Chronic Disease Care Conference, by me (2008) [...]

By: steroids online

steroids online — Fri, 07 Aug 2009 13:08:25 +0000

patient advisors directly who had been recommended by the conference planning committee or other colleagues

By: SusannahFox

SusannahFox — Wed, 24 Jun 2009 17:49:08 +0000

Calif HealthCare Fndn figured out how to include patient voices in last fall’s Chronic Disease Care Conference http://is.gd/1bRZr

By: Shwen Gwee

Shwen Gwee — Mon, 09 Feb 2009 18:42:34 +0000

RT @SusannahFox: Re Patient Speakers Bureau: an e.g. of how CHCF has included patient advisors in their conference: http://is.gd/e3ou

By: SusannahFox

SusannahFox — Mon, 09 Feb 2009 17:45:11 +0000

E-patients.net post on patient voices at CHCF’s Chronic Disease Care conference: http://is.gd/e3ou

By: Caron Lee

Caron Lee — Mon, 05 Jan 2009 22:20:44 +0000

The agenda and conference materials for “Chronic Disease Care: Better Ideas in Action,” are available at: http://www.calchroniccare.org/Event-Materials/2008.aspx

By: Caron Lee

Caron Lee — Mon, 05 Jan 2009 21:55:15 +0000

To identify patient voices, we first thought about for which sessions this would make the most sense. For example, most of the patient advisors were featured during the “Patient Voices” panel and the sessions on “Practice Level Changes and Tactics,” since they were better able to comment on these topics (e.g., care transitions, sharing medical records with patients, self management support) than on the themes for the other sets of panels — “Organizational Approaches to Quality” and “Bringing Better Care to a Population of Patients.” (Part of the reason is that few patient advisors are currently involved in improving care at the organizational and population health level.)

Then we contacted 1) patient advisors directly who had been recommended by the conference planning committee or other colleagues and 2) already invited speakers (typically health care providers) for references, either to their own patients or patient advisors with whom they had worked. In one case, a patient advisor recommended one of her friends (Nancy Ortiz), who had been trained to be a peer educator for individuals with diabetes, to be on the Patient Voices panel.

I called and spoke with each potential patient advisor and sent reminders and details about the conference by e-mail. For the Patient Voices panel, we also scheduled a brief teleconference with all the panelists to help give them an idea of what to expect.

Finally, CHCF provided a small honorarium to each of the patient advisors. Several have non-health care professions and had to take personal time to speak at the conference.

By: Susannah Fox

Susannah Fox — Mon, 05 Jan 2009 18:50:09 +0000

Thanks, Caron! Your conference had more patient voices than any I have been to, but I imagine it was a challenge to identify people who would be ready, willing, and able to take a day out of their lives to speak at your event. Could you tell us more about how you put together the speaker list?

By: Caron Lee

Caron Lee — Mon, 05 Jan 2009 17:48:50 +0000

Regarding what defines a “patient advisor,” CHCF consciously used the term out of respect for the role that these inidivuals would fill at the conference. (One speaker felt that the label of “patient” changed the perception of how she was viewed by the medical establishment; she saw herself perceived as less autonomous and less competent.) CHCF asked the individuals who would share their experience from the perspective of a patient if “patient advisor” was acceptable, and they agreed. Several of these speakers are peer educators in their communities as well and/or serve on internal committees for health care delivery organizations.

By: Susannah Fox

Susannah Fox — Tue, 30 Dec 2008 15:38:45 +0000

Clarifying question from @Sarahrpark: Re: the CHCF event, what is a “patient advisor”?

My reply: I think each person is a peer educator or counselor in their town or region.

If anyone from CHCF or elsewhere has more information, please post it!

By: Carol Torgan, Ph.D.

Carol Torgan, Ph.D. — Tue, 30 Dec 2008 02:58:54 +0000

@SusannahFox Great post on patient voices at CHCF mtg http://is.gd/e3ou They need to be ready to change & adoption is diff than maintenance

By: e-Patient Dave

e-Patient Dave — Mon, 29 Dec 2008 22:14:04 +0000

Excellent.

There’s an elephant-sized chronic disease that nobody thinks of as chronic: cancer. When I got my diagnosis, everyone (in our ignorance) presumed it was “death or cure,” but reality today is that LOTS of people are just living with it, learning to manage it with diet, mind/body, etc.

My current favorite book, Anticancer: A New Way of Life, has a mindbending concept: cancer without disease. I’m a specimen.