The People

 

Dr. B. Angeloe Burch, Sr.

Patient Family Advisor (PFA), member of Research Project Partnership (RPP), member of Cross Practice-Based Research Network (XPBRN)

Affiliations: Duke University, Primary Care Research Consortium (PCRC)

Father of 4 and Grandfather of 3, is a 4th Generation preacher and has pastored over 20 years in over 3 denominations. Currently serves as the Executive Director for the African American Community Collaborative, Inc. also known as the African American Dance Ensemble; Credentials Chair for the Inter-Denominational Ministerial Alliance of Durham and Vicinity; Adjunct Chaplain for Duke Regional Hospital, and Trustee for the North Carolina Museum of Arts. Dr. Burch holds certificates and diplomas for Counseling, Church Administration, Christian Education, an Associate Degree in Business Administration, a Bachelor of Arts; an MDiv and has earned his PhD in Philosophy of Religion and awarded an Honorary Doctor of Divinity. Dr. Burch serves as Chairman of the Families and Communities Rising Board of Directors, Executive Committee of African American COVID Taskforce, Member of Access to Care Committee, Durham Partnership for a Healthy Durham, Secretary for the Durham City/County Homeless Services Advisory Committee; MAT Team for the Durham Board of Elections, Meta-Larc ACP, CTSI/CERI Advisory Council, ACP-PFA Executive Board, Urban Ministries Board of Directors. He is a member of the Most Worshipful Prince Hall Masons, where he serves as The N.C. Worshipful Grand Deputy Director of Community Outreach, He is a member of G. E. Jenkins Chapter #82 of the Holy Royal Arch Masons, where he serves as N.C. Grand Director of Outreach, serves as Recorder for the Holy Royal Select Master Masons, Prior for the N.C. Past E.C. Council of Tarheel Commandery Knights Templar, and is a 32nd degree Sublime Prince in the Durham Consistory #218 where he serves as Prelate and Recorder for ZAFA #176 Temple AEAONMS Shriners. 

Affiliations: Wisconsin Research & Education Network (WREN)

Deb Constien lives in Sun Prairie with her husband of 24 years and 18 year old son Jacob. Deb was diagnosed with Rheumatoid Arthritis at the young age of 13. She graduated from Mount Mary College in 1993 with a double major in Dietetics and Biology. Deb serves as the Board Chair in Madison Wisconsin, for the Arthritis Foundation and Advocacy Chair for the Madison Leadership Board. Also for the Arthritis Foundation, Deb serves on the National Walk Committee, Platinum Ambassador Taskforce, National Advocacy Committee and started the Wisconsin Advocacy Committee. She leads an Arthritis Support Network in the Madison area. She also is on the Patient Council for the Global Healthy Living Foundation (GHLF), Patient Partners in Research for GHLF, and a Representative for International Foundation of AutoImmune AutoInflammatory Arthritis. She is a member of the Leadership Board Committee for WREN.

Deb Constien

PFA, member of RPP, member of XPBRN, trainer and member of SICP Adaptation Workgroup

Deborah Dokken

PFA, Patient Family Representative/Engagement Consultant, member of RPP, member of Engagement Group 

Affiliations: Institute for Patient- and Family-Centered Care (IPFCC)

Deborah’s involvement in health care grew out of personal experiences – the loss of two infants due to prematurity, her husband’s long battle with a rare abdominal cancer, and the care of elderly parents. She is now on the staff of the IPFCC. Previously, she was a co-investigator and the Associate Director of the Initiative for Pediatric Palliative Care (IPPC), a national project focused on improving care for children with life-threatening conditions and their families. Deborah has been a member of committees of the IOM, the FDA, and NIH and has also served on a hospital PFAC and a pediatric ethics committee. She is the author of several articles related to family-centered health care and is co-editor of Pediatric Nursing journal’s “Family Matters” section.

Affiliations: Iowa Research Network (IRENE)

I was diagnosed with Aplastic Anemia in 2014 and had a bone marrow transplant in 2015. I am an Administrative Service Coordinator in the DeGowin Blood Center at the University of Iowa Hospital and Clinics. I oversee all the documentation management. I have my Bachelor of Arts (BA) and Masters in Business Administration (MBA) degrees. I am married and have two children and two grandsons. I love to travel anywhere that has water. My hobbies include baking and working out in the yard.

Gail Drey-Provin

PFA, member of RPP

Jacqueline Alikhaani

PFA, member of RPP

Affiliations: Patient-Centered Outcomes Research Institute (PCORI), American Heart Association (AHA), American Stroke Association (ASA), and American Association of Retired persons (AARP)

Jacqueline Alikhaani is a cardiovascular patient and survivor of a rare congenital heart disease found in less than 1 percent of the population. The disorder was misdiagnosed for 48 years. She is a mother and serves as guardian for two family members with multiple disabilities. Advocating on behalf of all patients with chronic, disabling, or life-threatening medical conditions, she has continuously served in volunteer leadership roles with the AHA/ASA and AARP.  In addition, she was appointed to the AHA/ASA Citizen Scientist Task Force; she serves as a member of the President’s Advisory Council for the National Patient Advocate Foundation; and she is a veteran board member for a network of federally qualified health centers and other non-profit boards and committees, including the National Association of Community Health Centers. She is a consumer/patient reviewer for the International Cochrane Collaboration and has worked in editorial capacities on several international academic research journals. 

Affiliations: PCORI, Congressionally Directed Medical Research program (CDMRP), and Michigan Institute for Clinical & Health Research (MICH-R)

I am a 12 year, late stage lung cancer survivor, the father of three young daughters (ages 8, 9 and 12), and a veteran. Prior to my diagnosis I was the owner of an information technology consulting and staffing firm. Since that diagnosis I have become active in a variety of roles in research and healthcare settings. I am also involved in peer review for PCORI (on multiple boards), CDMRP Lung Cancer Research Program, and for MICH-R. I am a member of the leadership panel for Free to Breathe, a non-profit lung cancer support and research organization, and represent the patient perspective in their research funding efforts. The issues that drive me are ones associated with my personal experiences as a lung cancer survivor, and as the father of a 12-year-old with significant disabilities resultant from a severe brain bleed at the age of 21 days. My own diagnosis led to an early and very much unplanned retirement, so most of my last 12 years have been spent in patient and research advocacy roles. As someone who has lived with a life-threatening disease for the past 12 years, I have faced the issues associated with advance planning and directives, as well as with the ever-evolving nature of these directives as the disease progresses. I have experienced the conversations that are required firsthand, and, because of my ongoing involvement as a patient advocate in the lung cancer world.

James (Jim) Pantelas

PFA, member of RPP, member of XPBRN

Judy Katz

PFA, member of RPP, member of XPBRN

affiliations: University of Toronto Practice Based Research Network (UTOPIAN)

I have lived through the decline of both of my parents. They made it abundantly clear how long and how much medical intervention they wanted, and at what point they wanted to cease treatments and just be comfortable. They had a strong belief in quality as opposed to quantity of life. Their example showed me how important it is for patients to convey their desires to their families and care givers. Any decisions that had to be made were taken out of our hands so that we were not conflicted, and my parents ultimately received the care they wanted. I feel strongly that it is important to find the best way for other patients to also follow this example.

Affiliations: UTOPIAN

The communication spectrum is my passion, specifically as relates to health with a focus on end of life. By spectrum, I mean verbal/nonverbal; tone and delivery; listening and hearing; context and confidence; one-on-one and within one’s community. I have been immersed in identifying gaps in patient-facing health communication from the time I was in a prenatal class and was overwhelmed by jargon and assumptions (that ‘we expectant parents’ had sufficient basic knowledge). This led to developing television networks for patient education, broadcasting in hospitals across North America including, in the U.S., Johns Hopkins, NY Presbyterian, UCLA, and several VA’s. Alas, not in Oregon. This wound down around the time my father-in-law was diagnosed with CHF, and my attention turned to his ‘winding down’ advance care planning trajectory. When I realized how little I knew about what to expect, towards meaningful planning, I set about learning - finding my End of Life 101 first via palliative and hospice health care professionals on social media who welcomed me as a ‘knowledge translator’. This expanded to include attending and tweeting from conferences, meeting and learning ‘in real life’ conversations, and being provided to links to resources and end of life blogs. What I learned (and continue to learn) prompted blogging that became BestEndings. As for my father-in-law, he is 97, with all his wits about him while his body is failing I have collaborated with WestPark Health Center (Complex Continuing Care) on the Palliative and Supportive Care Steering Committee, the Toronto International Summit on Leadership Education for Physicians as part of the group exploring ‘Emotional Intelligence’, serving as a public member for the College of Occupational Therapists of Ontario, Women’s College Hospital Partnership, and finally as a PCORI patient ambassador.

Kathy Kastner

PFA, member of RPP, member of XPBRN

Keith Provin

PFA, member of RPP

Affiliations: IRENE

I am currently employed by The University of Iowa Department of Family Medicine as a Senior Accountant. In this role I work in Administration, as well as managing research support. I have my Bachelor of Science (BS) and Masters in Business Administration (MBA) degrees. I am married with 2 stepchildren and 2 grandsons. My wife and I enjoy traveling, especially to Florida and the Caribbean. My hobbies include reading, golf, and fantasy sports.

Affiliations: State networks of Colorado ambulatory practices & Partners (SNOCAP)

I am Kenneth Dailey and I have been a member of SNOCAP’s Colorado Research Network Patient Advisory Council (CaReNet PAC) for about 12 years. I am a retiree from the State of Colorado Department of Transportation. During my working years, I had to successfully interact with many people. After retirement, I wanted to continue my interactions, and being on the council has helped fulfill my desires. As a patient family advisor, I am happy for the opportunity to be part of the Advanced Care Planning project with Meta-LARC. I hope that my experience and my input will be an asset to the project.

Ken Dailey

PFA, member of RPP, member of XPBRN

Olga Petrova

PFA, member of RPP, member of XPBRN

Affiliations: IRENE

Olga Petrova was born in Saint Petersburg, Russia. In 1990, she came to the US for graduate study. Since 1993, she has lived in Iowa City. She got a PhD in Linguistics from the University of Iowa in 2001, and has been employed full time at Kirkwood Community College for the last twenty years, teaching English, Linguistics, and ESL. Olga's interest in joining the project as a PFA stems from different factors. First, she was a primary home care provider for her elderly grandmother while she lived in Russia. Second, Olga’s husband survived a heart attack at the age of 40. Third, Olga had been taking care of her mother and her mother-in-law since they arrived in the US in 2004. Both women came to the United Stated in their 70s; both spoke no English; both had multiple health issues. In the last three years of her life, Olga's mother had multiple surgeries, and due to her mother's lack of English and advanced dementia, Olga had to stay with her in the hospital all the time while she was there, which amounted to at least six weeks a year. Ultimately, Olga's mother had her leg amputated above the knee and was subsequently discharged to Olga's home rather than to a skilled care facility. She had been bed ridden at home for two years, until she passed away in 2019 at the age of 90, right before the pandemic began. This experience (both the hospital stays and caring for a bed-ridden person at home) gave Olga multiple perspectives on the end-of-life decisions patients and their caregivers have to make, especially if the patient cannot speak for him or herself in more than one way. Olga is currently taking care of her mother-in-law (who is to turn 91). Fourth, for several years, Olga was coordinating the ESL program in the Iowa City branch of her college. In this position, Olga was advising numerous low-income immigrants from mostly African countries, many of whom have faced challenges in receiving adequate medical care for their elderly and/or gravely ill relatives in their home countries, as well as upon arrival in the US. Olga is grateful for the opportunity to participate in the project and is very pleased to see that throughout the project, the need to consider special populations (including but not limited to ethnically diverse and those with dementia) has been discussed multiple times, and that those issues are being addressed and/or are to be tackled in the future projects.

Affiliations: Oregon Rural Practice-Based Research Network (ORPRN)

Susan has lived in The Dalles, Oregon for most of her life. She has 2 sons, Doug and Dylan.  She worked for the Area Agency on Aging for 24 years and The Dalles Meals on Wheels for 9 years.  Susan is a patient representative on the Community Advisory Council as well as the Clinical Advisory Panel for our local CCO/Health Council.  She serves as a patient representative and Co-chair of the Patient and Clinician Engagement (PACE) group for the North American Primary Care Research Group. She is co-chair of the PCORNET Engagement Workgroup. And a member of OCHINs Patient Engagement Panel (PEP).

Susan Lowe

PFA, member of RPP, member of XPBRN

If you would like to get in touch with any of our PFAs, please email us at METALARC_ACP@OHSU.edu.