autoimmune research, Uncategorized

The Allegheny Health Network Autoimmunity Institute — How my Crazy Adventure Found New Optimism

Written by Bonnie Feldman, DDS, MBA, Ellen M. Martin, and Hailey Motooka

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Do you have a passion project that sometimes drives you to do unexpected things?  For many years I have been dreaming of improving research, diagnosis and care for autoimmunity by bringing the best of conventional, integrative and digital medicine to autoimmune patients.

And so, without giving a thought about the travel logistics, I quickly said yes to to an invitation to go to Pittsburgh to visit the new AHN Autoimmunity Institute.

Yet, as I got up at 5:00 am in Philadelphia, after The Eyeforpharma Patient-centered conference, my mind was racing with questions. Would a five-hour car ride to Pittsburgh with Bill Conlan of Medverse, as well as an extra stop on the Southwest flight back to LA be worth the effort?

Could a new Institute that combines a payor and provider in Pittsburgh begin to meet some of the large and growing needs that we found in our Stanford Medicine X survey of autoimmune patients?

I was pleasantly surprised to meet Dr. Joseph Ahearn. Humble and soft spoken, he and his wife, Dr. Susan Manzi are a team with a long history of dedication, creativity and scientific excellence finding new ways to better serve autoimmune patients.

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Designing a physical space that is upbeat and positive for patients and staff

The new offices are built with both patients and the care team in mind.  As you enter the large and bright waiting room, decorated with a diverse mix of photos of happy people, you are warmly greeted by caring staff.

At the end of the hallway you see a photo of a couple dancing. It was designed to inspire those with debilitating chronic autoimmune disease to enjoy life.  It reminded me of my own musculoskeletal journey: weekly physical therapy for 30 years and then adding yoga therapy, Feldenkrais and Gyrotonic where I am now dreaming of tap dancing!

Streamlining care coordination

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Patients can be seen by multiple specialists, sequentially or simultaneously.  As shown above, there are 12 different specialties, including but not limited to, allergy, cardiology, dermatology, gastroenterology, genetics, infusion therapy, nephrology, nutrition and behavioral health, rheumatology.  You can also see the focus on autoimmune diseases: Lupus, RA, Celiac, and IBD.

This was so unlike my most recent appointments at other institutions, which were a series of expensive and time-consuming one-on-ones with various specialists (rheumatology, endocrinology, infectious disease, sleep medicine, ENT and physical medicine, etc.). Sadly, although my team of specialists there mean well, their system is not designed for efficient collaborative care. For example, it took multiple emails and days to get the answer to my simple question of whether I should get the new Shingles vaccine. In order for me to get their multiple perspectives, I must act as the team lead, project manager, and secretary.  Given my medical training this is doable, but what about patents who did not go to medical/dental school?

How wonderful for patients to finally get the streamlined care collaboration and coordination that we know is important to our long-term wellbeing.

Designing for team collaboration – a huddle hallway with the research team nearby

As location matters in real estate, so it does in collaborative team work.  Dr. Ahearn has created an open work space for the teams, so that they can “huddle” together to discuss the needs of particular patients.  These “huddle” sessions can take place while the patient is being examined or afterward.

Other team members include a nurse practitioner, outcomes specialists, research study coordinators, clinical pharmacologist and a biostatistician. Having researchers close to the clinical team can streamline the clinical trial process for both sponsors and patients, especially by putting the research in the familiar care setting.

An entrepreneurial approach to find better biomarkers and reduce misdiagnosis

Drs. Ahearn and Manzi were early pioneers in improving care for Lupus patients, focused on developing better biomarker-based diagnostics and identifying misdiagnosis. They are the creators of the Avise test, an advanced Connective Tissue Disease (CTD) differential diagnostic designed for patients with positive ANA test results or those concerned that they may have lupus or related CTD conditions.

With their entrepreneurial experience in creating new lab tests, they and their team at the AHN Autoimmunity Institute will focus on research to improve the sensitivity and specificity of the diagnostic tests for the various autoimmune diseases and other immune mediated diseases, using lab-on-a chip technology.

Next steps prevention

And I finally had a chance to ask my burning question “What about prevention?”

His answer surprised me. “The future is a vaccine, perhaps a celiac vaccine will be the first one.” A vaccine for celiac or other autoimmune disease could be a significant paradigm shift in approach. Stay tuned for more.

Meanwhile, they are in the process of deciding which integrative medicine approaches they will be incorporating in the AHN Autoimmunity Institute. Right now, they are considering acupuncture and tai chi.

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My vote is to incorporate movement therapy and why food matters. I think diet and nutrition are incredibly important, often overlooked, factors that have significant impacts on systemic health. It would be great to see Allegheny and other integrative practices tackle dietary interventions.

Spoonies, what is on your integrative wish list?

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