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2 Recommendations

Challenge Identifying Big Problems to Solve: Creating vignettes of consumers/patients for whom HIT could change their lives

By Anne-Marie Audet | 10 Dec, 2014

This is a challenge i would like to post to the network. We all know the power of narrative in focusing attention and energy.

I am calling for submission of big problems that consumers/patients have as it relates to their health, that HIT could solve. But the big problem should be submitted as a vignette of a person, telling the story of the problem from their perspective. And to bring in the what ifs? What if Mr Gil, who is 83, and complains that he is much too alone and is scared to take his medication, could find a new friend and be able to regain confidence. How could HIT get him to what he seeks? We want all types of people, women expecting or with a newborn, overweight kid, restaurant waiter with asthma, teacher with diabetes, retired man with athritis - so we can represent our society.

The goal with this challenge is to collect enough different vignettes that we can begin to create a few, say 10-20 consumer/patient types that can then inform strategic problem solving, as to how HIT could engage people and change their lives.

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Kathlenn Healey Replied at 8:27 AM, 12 Dec 2014

Claire is a 35-year-old single mother of a 13-year-old teenage boy. She has little social support related to her inability to leave her home due to profound disability associated with progressive multiple sclerosis. She continues to have active MS with active lesions and recent relapses. She has good cognitive function vision is mildly limited vision, hearing and speech are intact. She has use of one arm which is her nondominant hand. She has numerous other issues that are associated with progress multiple sclerosis including bladder dysfunction for what she has had a suprapubic catheter placed she has frequent recurrent urinary tract infections. Due to her immobility she has developed numerous pressure sores and one has it needed to be grafted. She was admitted to our service with three active pressure ulcers. She has truncal weakness therefore reduced inspiratory and expiratory efforts. She had a respiratory infection in the spring of 2014 but was not hospitalized. She continues to smoke she has made numerous attempts to stop. She has severe spasticity associated with multiple sclerosis and has a baclofen pump placed which is a managed by a rehabilitation hospital. She has a pain her care is managed by numerous disciplines including medicine nursing social service OT and PT. She does use the Internet systems but it is difficult for her due to her discoordination and weakness of her functioning arm. She is able to use her cell phone but this is difficult also because of the weakness to her arm. She has dog named Bindi her 13-year-old son and a neighbor who is supportive... no other family. She has established services with public transportation but has numerous subspecialty services involved with her care that all require her to be seen at different points in the .... this in and of itself has been overwhelming for her. Just recently been enrolled in a house call program including MS specialist and a Primary care MD with a dedicated home healthcare agency and which values continuity in providers. Communication between all of her subspecialty and multidisciplinary providers has been difficult. Patient does advocate for her own care she is enrolled in both Medicare and Medicaid in. She has an intense desire to stay at home to avoid any long-term care facilities. She has thoughtfully outlined advanced directives and wishes all measures possible and aggressive medical treatment .She realizes that she is at risk for the complications of immobility she has received the flu shot and Pneumovax and does carry out preventative healthcare measures on a routine basis but this is difficult for her to leave her home as well as difficult for her to go to practice that accommodates this amount of disability including a dentist.

This is an extremely complex chronic issues where do you start? Where could H IT be helpful for a patient like this and what would be the number one target? well individuals with a few problems certainly can benefit from HIT but what about patients like these

So we did ask Claire what she needed number one she wanted continuity in her care and people that knew her she didn't want different people coming into her home asking the same questions over and over again. She wanted quick response to her needs and gave numerous examples of infections or injuries where there were a long delays in responses and getting in for treatment. She adamantly wanted to stay at home and wanted her care coordinated as she had numerous subspecialty and multi to disciplinary providers. She found it overwhelming and managing her care with the numerous multidisciplinary providers. She found it overwhelming to deal with paperwork that was associated with all of her health care needs.

Christine Haran Replied at 11:27 AM, 12 Dec 2014

Here's an infographic that we've used at The Commonwealth Fund to demonstrate one type of high-need, high-cost patient.

Attached resource:

Soojin Jun Replied at 3:05 AM, 13 Dec 2014

Mr. Lee is a 63 yr old man who has been diagnosed with stage 3 esophageal cancer with complication of diabetes. He is a foreigner, but can communicate in English, although limited. He has hard time swallowing and has been put on G-tube. He has been given two options for treatment, either surgery or chemotherapy. He has elected to receive chemotherapy initially but this decision hasn't been properly guided with full explanations of procedures and possible consequences. When interviewed again, Mr. Lee understood as they were compatible options and both resulting in similar results. The surgeon now strongly recommends the surgery, an option that Mr. Lee does not have any longer because of significant weight loss. Mr. Lee only has emergency insurance and his fund is quickly dissipating. He is a foreigner and he does not qualify for financial help. He is on 20 different medications and needs to check glucose 5 times a day. He was inpatient for a month and was in psych ward for two days; the two days at psych ward was inadvertently done without Mr. Lee fully understanding how he would be treated. Insurance wouldn't cover further inpatient stay but he was able to afford a nursing home stay for a month. Now lives with his daughter and son-in-law with two grandchildren. He is a lifelong smoker and drinker and has attempted quitting smoking but has been unsuccessful. He likes to get a second opinion at MD Andersen, but the insurance only covers in-state. He now wants to go back to his country and get treatment because it is cheaper and therefore can get comprehensive care. However, he is too frail to travel and time is running out. He has been to emergency department twice for hypoglycemia recently but his glycemic level is out of control.

This is a brief summary of what my father has gone through. Can you help someone like this or caregiver (me)? I had two toddlers to take care of, so I couldn't attend to any of his counseling sessions with doctors. Would child care by oncology unit be helpful? I sometimes think so for women's cancers too. By the way, he passed away shortly after the two ER visits. It was a week before his flight to his country.

Kathlenn Healey Replied at 5:25 PM, 13 Dec 2014

Soojin Jun. Unfortunately as you know this situation happens commonly on a day today basis in patients who have very complex needs. In my opinion situations like these have to be considered very thoughtfully and a mix of high touch and personal relationships (as you have pointed out ) as well as patient advocacy (as you know) is fundamental for this part of the patients and families journey. Hi Tech solutions should only support not replace the important fundamentals of relationships and thoughtful discussions about care options and care.

Our team has a position that we referred to as a comprehensivist (Healey, Charlton 2014) this person has a strong background in medicine as well as nursing and social services primary and speciality care . This person helps the patient and family navigate a very complex system between specialty care and primary care thus the comprehensive-ist. Depending on the needs of the patient it could be a social worker, pharmacist, provider (in many cases it benefits the patient if provider has rx privileges so that needs can be expedited it rx for meds, durable med, therapies etc.... .) Appropriate HIT could play a very big piece in the coordination and communications between providers and families providers and patients and providers to providers. The comprehensivist spends extensive amount of time coordinating services for a very complex patients this is extremely difficult and in a situation like yours a comprehensivist would have arranged appointments and discussions as best as possible around the difficult schedules summarized meetings.

In January we are integrating a Tele health aspect with the patient and family at the center and scheduling regular care plan conferences with other disciplines with the patient in their own home. Again I am a nurse practitioner in Multiple Sclerosis and partner with my neurologist and PCP, our team includes a dedicated home health agency that promises continuity of providers. It is wonderful so far we are planning to report on some retrospective data soon have to get IRB. It's hard to get the research started as we are so busy.

The way I see it currently is that with the overlay of technology ....administrators are expecting providers to see patients in a shorter periods of time with the assumption that the current EMR's will facilitate more efficiency. This is far from the truth and well-documented that providers are spending in fact more time in documentation and "clicking boxes" than meaningful time with patients and families.

I am very sorry that you had to experience that situation with your dad. Your thoughts about day care in oncology areas is great, all the kids also going through some tough times too. In my situation I was working full time ++++ and my father's PCP made rounds at 5 am so I'd get up at 4am to be there and try to get back over lunch to catch at least one of the 4-5 specialist on his case. Then back to his bedside after my work at 6 or 7 pm He was hospitalized for 40 days it was "gut wrenching" he died in ICU . I wish I could say that my mother situation was different but it was much the same numerous sub specialties and very poor communication between providers, staff, patients and families.

This Community is Archived.

This community is no longer active as of December 2018. Thanks to those who posted here and made this information available to others visiting the site.