Gigamap of Rethinking Mental Health

1. PERSONA

Type of Communication with Provider Number of Providers

Patient Type 1

Janet Smith Janet Smith sees five doctors on average. With so many doctors, she has a lot of responsibility to keep track of her health. Therefore, she has active conversations with her doctors to make sure she is getting proper care.

She regularly researches the medication that she is taking and comes to her doctor with questions. As a cancer survivor, Janet learned to take an active role in her medical decisions. Her main informational resources are her doctors and medical pill books.

Being diagnosed with cancer had a strong impact on how Janet finds support. She is very dedicated to her faith and often looks to religion for strength. She also gets a lot of support from her cancer survivor group. This group helps Janet to be a part of a community that has been through the same ordeal as her.

Seeing one doctor

Seeing two doctors

Type of Communication with Provider

Ownership of Medication Information

Sources of Support

Family

Community

Paternalistic

Passively following Dr's direction

Independent

Mutual

Actively seeking for information

Family

Seeing four to five doctors

Information

Quality of Life

Transportation

Awareness Level in Environmental Hygiene

Socialization

Activity

Location based

Human network (ex, neighbor, friend, cancer support group)

Ambulance Dr.'s shuttle

Extremely aware (ex; germophobe)

Active with family and friends

Active (ex; social interaction or workout)

Faith based

Dr. only

Family Neighbor Community

Moderately aware

Inactive and alone

Moderate

Social service based

Institutional information (Pill book, Cancer Center)

Self-transport

Extremely unaware (ex; horder)

Active with community (ex, church

Inactive (ex; sedentary)

Janet realizes that she needs to live a healthy lifestyle, so she tries to be very active. She has a regular exercise routine and works out about an hour a day.

She believes that this routine allows her to live better and be independent.

Sources of Support

Type of Communication with Provider Number of Providers

Patient Type 2

Marilyn Taylor Marilyn Taylor has two doctors she sees. She believes that the doctors know the most about her health, so she does not see a need to be involved in her medical decisions. When she sees the doctors, she answers their questions, but does not ask many of her own.

Marilyn does the minimal amount of work necessary to maintain her health.

She is not very active, and lives a very sedentary life. Most days she just sits at home and watches television.

Seeing one doctor

Seeing two doctors

Type of Communication with Provider

Ownership of Medication Information

Paternalistic

Passively following Dr's direction

Mutual

Actively seeking for information

Family

Community

Information

Patient Type 3

Betty Sigmund

Seeing one doctor

Betty Sigmund has one doctor that she sees regularly. She follows her doctor's orders but wants to be more involved in her medical decisions.

She does a lot of research on her medication and feels that she needs to bring her concerns to the doctor, since she takes several medications.

However, she feels that the doctor does not listen to her needs.

Seeing two doctors

Even though she gets information from her doctor, Betty gets most of her information from friends. Her neighbor has been helpful in searching online for information about Betty’s medications.

Seeing four to five doctors

Paternalistic

Passively following Dr's direction

Mutual

Actively seeking for information

Socialization

Activity

Independent

Ambulance Dr.'s shuttle

Extremely aware (ex; germophobe)

Active with family and friends

Active (ex; social interaction or workout)

Family

Faith based

Dr. only

Family Neighbor Community

Moderately aware

Inactive and alone

Moderate

Social service based

Institutional information (ex; Pill book and center support center)

Self-transport

Extremely unaware (ex; horder)

Active with community (ex, church

Inactive (ex; sedentary)

Type of Communication with Provider Ownership of Medication Information

Awareness Level in Environmental Hygiene

Location based

Marilyn is very dependent on family to help take care of everyday things. She lives with her brother who helps to keep the house clean and cooks. Marilyn also relies on her brother to drive her to her doctor’s appointments.

Type of Communication with Provider

Transportation

Human network (ex, neighbor, friend, cancer support group)

Seeing four to five doctors

Number of Providers

Quality of Life

Sources of Support Family

Community

Information

Quality of Life Transportation

Awareness Level in Environmental Hygiene

Socialization

Activity

Independent

Location based

Human network (ex, neighbor, friend, cancer support group)

Ambulance Dr.'s shuttle

Extremely aware (ex; germophobe)

Active with family and friends

Active (ex; social interaction or workout)

Family

Faith based

Dr. only

Family Neighbor Community

Moderately aware

Inactive and alone

Moderate

Social service based

Institutional information (ex; Pill book and center support center)

Self-transport

Extremely unaware (ex; horder)

Active with community (ex, church

Inactive (ex; sedentary)

Betty is dependent on her network of friends. Even though she lives independently, her network helps her to accomplish many of her errands.

Since Betty does not have her own transportation, when she needs to go to see her doctor, she calls for an ambulance or asks that her doctor’s office pick her up.

2. STAKEHOLDER MAP assists patient with daily needs

FAMILY, COMMUNITY SUPPORT

CAREGIVER

PATIENT

builds relationship and trust

assesses patient cognitively, provides medical information & social resources for patients needs provides OTC medication

assesses elderly patient holistically

CCA

manages/ supervises assesses & prescribes medicine based on need

fills prescriptions

CCS RN/ SOCIAL WORKER communicates through patient chart and notes

PROVIDER

fills prescriptions at

DRUG STORE

no direct communication between multiple providers

PHARMACIST

PRIMARY DOCTOR

creates, distributes, & promotes drug

DRUG COMPANY

GERIATRICIAN

3. PATIENT MAP LIVING CONTEXT

MEDICAL CONTEXT MEDICINE

DR / PATIENT INTERACTION Health Consciousness HIGH PRIORITY

• Rigorous exercise schedule: Monday - Friday twice a day, different type • She uses a mask when the door is open to not breathe in outside air • She has gotten a mammogram screening • Seems to be health conscious, takes multivitamin, fish oil, and garlic supplement • “Getting better takes time”

LOW PRIORITY

• Sometimes she takes a walk, but it is too cold now • No physical activity or exercise

Information Resources TV

• She constantly watches TV. • She primarily watched TV. for information • Doesn’t listen to everything said in ads

PHONE

• Playing games on the phone such as Solitaire • Playing games often • Did not have internet or smart phone, uses land lines • Just phone calls, no access to internet

INTERNET

• Many patients do not have internet • She doesn’t have a computer, wish she had it • No internet to look up meds online

Home Environment

Transportation TRANSPORTATION / MOBILITY

HOME DECOR AND VALUES Family Values

• Limited mobility, caregiver support patient's life need • Live alone without having caregiver

• Lots of pictures of family on wall and table

Religious Values

• Collecting a lot of little angels, there is 24 different kinds of angels in the living room • Religious pictures and symbols, and a cross a picture of Jesus on the wall • Has Bible on stand • Certificate of ministry on display

LIMITATIONS

ENVIRONMENTAL HYGIENE Cleanliness

• She usually takes an ambulance to the hospital.

If she is really sick she calls an ambulance • Current doctor will come and pick the patient up at home, drive to doctor • New doctor provides transportation • Brother was the main source of external contact, drives her to see doctor

• She doesn’t have a car • She has a car, but she can’t drive her car... because her car does not work she is unable to move freely due to disease distress

MEDICAL VISITS

• Her environment is clutter free and clean • The home was neat there were papers stacked on table • House was clean and smelled fresh • Sweeping floor regularly • Talked about cleaning often

Messiness

• Cluttered house with lot of stuff • Crowded, dirty house, hoarder • Multiple TV’s, bottle of soda, bird cages • A bag of apples laying around living room • Complained of having mice in home • In the living room have old house smell • House has a odor to it • House has mothy smell

DAILY NEEDS

• She will beg someone to drive her if nephew is not free • Daughter drives her • Neighbors will give her rides • She does laundry at laundromat and her landlord takes her to the laundromat

Daily Activities EATING HABITS

• Usually has two big meals a day and snacking during the day • Eats two meals each day • Eats breakfast, eats dinner with a bowl of soup, prepares meals at night separately • Likes to have variety in his breakfast food • First thing patient does is eat breakfast • Stomach ache and sticks with the same cereal • Food is all around the living space • So she said she sticks with water, drinks pop once in awhile, we observed a Pepsi bottle.

• His wife and him are doing a diet • She cooks meals • She goes to Save-A-Lot and sometimes Kroger for grocery shopping, someone gives her a ride

SLEEPING

• Wakes up between 6 - 11 a.m. (variable) • Wakes up 8:30 - 9:00 a.m. and goes to bed 10:30-11 p.m.

• She goes to bed at 10:30 - 11 p.m., she sleeps well, sometimes wake up because her stomach aches

ENTERTAINING

• Most of the time stays in home and watch TV • Read magazines, watch TV, shopping on infomercials

HOUSEKEEPING • Washes dishes

Interests/ Extracurricular Activities COLLECTION

• She collected a lot of CDs • Bell collection on mantel • She collected more than 10 Barbie dolls

HOBBY

• She cares about cooking she enjoys, like puzzle makers • He likes to buy cars, rebuild them and sell them

RELIGIOUS ACTIVITY

• Singing in church choir • Going to church every Wednesday night and Sunday morning • Reading bible at home two chapters every morning and before going to bed

Support System

Household Residency

DYNAMIC WITH CAREGIVER

Medical Conditions DIAGNOSIS

LIVES ALONE

• Patients don't want to create more burden to family caregivers • Many patients don't have any caregiver

• Suffers from anxiety • Diagnosis medications treat: anxiety, borderline diabetes, arthritis, herniated disc • She has schizophrenia disorder • High blood pressure, anxiety, bladder disorder, thyroid, pain from previous cancer treatment • Suffers from back pain • Had Meniere's (a popping in the ear) • She really wants to treat tremor now • She had a kidney infection, her bladder was taken out • Kidney infection and chemotherapy, it has been 5 years • Was diagnosed with Lupus in late 90’s. Used 40+ medications at the time

• She lives alone and does not have a main caregiver.

LIVES ALONE BUT HAS SUPPORT

• She lives alone, but has a lot of family support

NO FAMILY SUPPORT

• No family aids. Her sister wouldn’t touch her, feared catching cancer • Her son is in prison • Some patients have children who have passed • Contact list: 2 sisters, 1 brother, church people, neighbor down the street • Her family does not live in Indiana • Primarily sees one child during the main holiday

FAMILY SUPPORT

• Family visits often • Her children check up on her regularly • Patients have many children and grandchildren • Raise 16 foster kids • She lives alone and her daughter moved back to help as needed • Daughter drives her and does most of the chores for her • Daughter helps to clean • Her daughter helps to remember because she has memory problems • Daughter take her to doctor and checks on her regularly • She may not want ask doctor she depends on her daughter • Wife is his caregiver/ treatment partner • Brother did most of house chores • Son acts as “caregiver” for mother

LIVES WITH FAMILY

• He is married and lives with his spouse.

• Patient lives with brother and he has health concern too • Patient lives with daughter • Patient lives with son

DWELLING CREATURES

• Has 3 dogs, 2 birds, children • Little dog • She have a cat that is 18 years old

LIMITATIONS

• Sometimes she feels like she loses balance • Patient does not go outside often, she said that she gets sick easily • She has to watch and be mindful about what she eats, they took her bladder out because of cancer • Her knees are not good • Patient does not often leave house, especially after knee surgery • Patient had knee replacement so mobility is limited • Has asthma and won’t go out in the cold

PROCEDURES

• Experienced painful liver biopsy

MEDICATIONS FOR TREATMENT OF SYMPTOMS

EXTENDED FAMILY SUPPORT

• Her niece help her to play solitaire game on the phone.

• Niece takes her to church, but not if it is cold or there is snow.

• Their nephew helps them as needed • Nephew will look after her brother and take her to doctor

PROFESSIONAL HEALTH PROVIDER

• Home health comes once a year to do wellness check on her though AARP • She has a health provider assistant that she sees once a year • Support system is breast cancer survive network

PATIENT PERSPECTIVE

NEIGHBOR SUPPORT

• Neighbors help out, no family caregiver • Support system is breast cancer survivor network • No one involved in my care, but neighbors help sometime • She lived 40 years in her neighborhood • She has lived in that neighborhood for 6 years • Long-term resident in the neighborhood lived in home for 15 year

• Medications to control blood pressure since 1991 • Trying to lose weight, some past medicines made her gain weight • Her meds are treating for neuropathy in feet • When she is shaking that means she should take drugs • Take medication for tremor. But use anticholinergics for sleep aids • Her medication treat: Muscle Spasms • Spasms make her take the medication irregularly • Anticholinergics treated bladder • Patients has nervous feet so takes meds irregularly • She said all drugs in the box are for tremor

Doctor Prescribing COMMUNICATION ABOUT DRUG • Highly trust Dr. order of medication without questioning • Patients lack of awareness inhibits them from having an active dialogue with providers • Taking a passive role in communication with Dr. • Dr. is not informative about bringing awareness of adverse effects to patients • It influences the patient's trust to Dr. when Dr.'s prescribed med doesn't address the patient's side effect and/or concern • Caregiver as main communicator in Dr./Patient interaction, neglecting the patient

TRUST

• She trusts doctor to prescribe the best medications • Patient values relationship with doctor because she wants him to give the information she needs • She believes the doctor • She trusts doctor's’ recommendation and doesn’t know about the side effects of current medications • Trusts her doctor. Has been 4-5 years with the same one • Overwhelmed by side effects, research is not a priority, she trusts the doctor • Trusts doctor implicitly • Doctor didn’t make a big deal about the medications so she trusts doctor • He cares about safety, but listens to doctor and if symptom he has is being treated

OBEDIENCE TO DOCTOR’S INSTRUCTIONS

• Doctor constantly adjusts medications • Doctors suggests the medications so she takes them • Follows/sticks with prescription from doctors • Doesn’t take medicine if not prescribed by the doctor • Doctor told her that she was better because the medications were working • Patient would listen to doctor’s orders if told to take a drug • Follows directions/opinion of doctor (obedient) • Patient takes drug based on doctor's recommendation • “Only problem is my high blood pressure medications. Still, I am compliant and follow the doctor’s orders.”

• She takes the medications the doctor orders.

• Primary Care Physician is the gatekeeper/decision-maker • No caregiver participation. Decisions are made in one direction- Doctor to patient. Not bi-directional • Patient relies on doctor for all medical information

DISAGREEMENT WITH DOCTOR’S INSTRUCTION

• Disagreed with pain doctor because she didn’t want to take medication • She brought her concerns to her doctor. But she kept on the medication by doctor for a short time • Doctor only prescribes medication and didn’t tell patient what it was for

CHURCH COMMUNITY SUPPORT

• Patient gets help from church friends • Church feel like a home • She has been with that church for 12 years.

Medical Visits

Decision Making

TIME WITH PROVIDER

DRUG USE

• Hard to schedule appointments with Dr. in a timely fashion • Changed to see different Dr. who is more available for appointments. (New Dr. will need more time to build trust and holistic understanding about the patient) • Because of the limited time for each appointment, patients don't feel Dr. has enough of time to understand their condition and interest holistically

• Safety of drug is not as important as effectiveness of drug, in most cases • Concern about side-effect, negative effects & addiction while using drug • Patients appreciate drug's immediate effectiveness • Immediate side-effect will influence patient's usage •It influences patient's decision of drug usage when Dr. prescribed med doesn't address patient's side effect and concern • Cognitive-impaired patients would rely on caregiver's support with drug usage and decision

FREQUENCY

DRUG PRICE

• Doctor is helpful as needed • Visits Doctor 3-4 times a year • Meet with the Doctor every 3-4 months • Sees doctor every month • Visits her doctor every 3 months • She sees her doctor every 6 months • Visits various doctors: Oncologist, Rheumatologist, Primary Care Physician, Ophthalmologist, Dermatologist • Doctor involvement is as needed, but the Doctor or staff is available to assist with questions

• If the alternatives were not expensive, patients probably would consider • Stocking up on drugs, because it can be too expensive individually • Sales promotion for drug

Medication Prep & Storage PILL STORAGE

• Store medication in room, living room, floor, and on a table, dresser near bed • Use plastic and fabric bag to store medication in her bedroom • Does not use pill box • Patient stores medicine in medicine box • No pill box. Pill bottles on the table

PILL PREPARATION

• Set medication up for 2 days in the morning • I place the medication in a container and refill them every 2 days • Pill Box helped to organize day • Put drugs in box by herself • Patient organizes pill box herself weekly • Has pillbox by the week • Pill box has 2 weeks in set

PATIENT HAS ACTIVE ROLE

• Careful about medication taken because of drug interaction • Patient is concerned about side effects and would not take drugs with others • I requested anticholinergics because I itch and scratch all of the time • She does not want to take too many drugs • “I’m not taking it, I don’t care what you say, it is too painful” • Heard supplements are good for you, so I take them • Patient does not want to be on medication • If she reads the side effects of drugs, she wouldn’t take it at all • Seems overwhelmed by adverse effects information. Patient does not look at it • Doesn’t want to get addicted to anything • Safety of drug is important. She wants medicines to work, but doesn’t want to get addicted • Patient used to take prostate medication, but changed to cheaper medicine and symptoms went away • She can read the labels so she always asks doctor any question she has • She asks doctor when experiencing issues with medications or when she has a question • Will tell doctor if meds are not working • Asks doctor questions about medications

TIME WITH PROVIDER

• Appreciates when doctor spends time to get to know her • Needs to be able to schedule appointment and communicate with doctor • Patient doesn’t feel she has a lot of time with doctor • Patient switched doctor after 12 + years because he was never available but valued relationship • Left Eskenazi because couldn’t get into see doctor enough. Concerned that they wouldn’t be available

POSITIVE RELATIONSHIP WITH PROVIDER

• Doctors are good, staff are so-so • Patient notify doctor of concern • Doctor was good about pointing out which medications could be addictive

NEGATIVE RELATIONSHIP WITH PROVIDER

• She takes blood pressure medication regularly and wants to stop it, but doctor disagree and thinks it is better because it is working • Doctor involvement: not good, she does not help me, she is not informative • Asks a lot of questions for the doctor, but she doesn’t respond • He thinks primary care physician is out to get him • Passionate about not liking primary care physician

Information Source TV

• Does not pay attention to drug commercial • Watching TV advertisements for information

ORGANIZATIONS

• She has AARP Medicare Complete plan • She get a lot of advice from AARP representative once a year • Little Red Door provides her with info sessions on medication

FAMILY & COMMUNITY

• She gets a lot of information from her neighbor who has internet and a computer • Asked my niece and other doctors about some of these medications

PHARMACY & MEDICAL PROVIDERS • Suggestion on getting health information from CVS Pharmacy • Patient gets instruction from doctor and pharmacy • “Does not look online, doctor said to not do it.”

• Meds are from CVS, Family Dollar and Eskenazi

Perceived Effectiveness EFFECTIVE

• She feels medication always works for her, in general • Anticholinergic medication always works for him (out of always, sometimes, rarely, never) • She always feels anticholinergic medication works for her • Sometimes anticholinergic medication works for the patient • She feels safer taking medications • Muscle spasm medication always work at night

INEFFECTIVE

• Most medication help, but a few are hit and miss • Sometimes patient expectation are met, some days medicines work and some days do not • Alternatives prescribed by doctors didn’t work well • Initially her drugs did not work, changed prescriptions • “All the medicine will kill you”

REFERENCE LITERATURE

• Read the inserts that come with the medications • Drug company sent a lot of information pages that she read and were very helpful • Viewed the medication info that was mailed to her by the drug company • Gets info from pill book

• Patient never asks the doctor for less medication • Patient doesn’t question doctor’s orders nor the medication she is prescribed • Patient doesn’t ask, he feels the doctor does a good job of keeping him updated about changes • She doesn’t ask about alternatives or doctor’s reasons behind prescriptions and medication decisions • No risk of the drug was discussed • Doesn’t talk about meds with family, physicians or pharmacists

• Doctor only prescribes medication and didn’t tell patient what it was for • Doctor did not give patient any information on drugs • Patient said that doctors might not want her to look up info on computer for fear of false information • My doctor told me about them (anticholinergics)

FINANCIAL CONCERNS

• Is motivated to buy things on sale, wants to stock up • Saved most of her checks to save money and buy house • Sometimes she does not have enough money in budget • Price conscious • If alternative medicines were available, patient would take them if they weren’t expensive

FRIEND SUPPORT

• Discusses symptoms w/ friends • Friends take her to the grocery store

DRUG SAFETY VS EFFECTIVENESS • Skeptical of “do nothing” doesn’t want to wait for it to resolve, wants a treatment • Safety of drug is not as important as symptom relief • “Some medication I need, so I ignore side effects” • Patient equally values safety and effectiveness from medication

5. PROBLEM SPACES PATIENT

• Highly trust Dr. order of medication without questioning • Taking a passive role in communication with Dr. • Patients lack of awareness inhibits them from having an active dialogue with providers • Dr. is not being informative about bringing the awareness • It influences the patient's trust to Dr. when Dr.'s prescribed med doesn't address the patient's side effect and/or concern • Having caregiver to be their communication to Dr.

COMMUNICATION ABOUT DRUG (Communication with Dr.)

• Hard to schedule appointments with Dr. in a timely fashion • Changed to see different Dr. who is more available for appointments. (New Dr. will need more time to build trust and holistic understanding about the patient) • Because of the limited time for each appointment, patients don't feel Dr. has enough of time to understand their condition and interest holistically

TIME WITH PROVIDER

• Safety of drug is not as important as effectiveness of drug, in most cases • Concern about side-effect, negative effects & addiction while using drug • Patients appreciate drug's immediate effectiveness • Immediate side-effect will influence patient's usage •It influences patient's decision of drug usage when Dr. prescribed med doesn't address patient's side effect and concern • Cognitive-impaired patients would rely on caregiver's support with drug usage and decision

DRUG USE

• Various media / approaches for drug info with different level of credibility and quality • Dr. is the only source for medication info • Patients are willing to try alternatives, but they aren't exposed to alternative options • Consideration of effectiveness of alternative

PARADIGM SHIFT (Alternatives)

ACCESSIBILITY TO RESOURCES

• Not knowing about long-term side-effect of the drug when receiving/buying the drug • Patients are aware of the current side-effect and react to it immediately, but harder to react to the long-term side-effect • Patients only know drug by shape and & color, nothing else about drug itself • Patients understand what each medication is for, but don't know anything other than the curative effect

DRUG AWARENESS

AWARENESS

• If the alternatives were not expensive, patients probably would consider • Stocking up on drugs, because it can be too expensive individually • Sales promotion for drug

DRUG PRICE

PARADIGM SHIFT • Patients are willing to try alternatives, but they aren't exposed to alternative options • Consideration of effectiveness of alternative

OPEN

• Drug safety is important but she wants drug to work, would be willing to try alternative • Would take alternatives but only if it helps • Willing to change medication if alternative is available, but unlikely to request it • She stops and asks for alternatives if medicine is not working • Willing to try alternative drug • Wants alternative drug treatment and would be willing to try it • She would take the alternative that is safer for her brain • She wants to have a new drug where she can take only one pill once a day

OPPOSED

• Patient does not try other drugs • Patient does not seek alternative medication unless doctor brings it up • Patient does not demand other medication options • “I don’t ask about medication the doctor just gives them to me” • Patient uses medicine as first response without researching other sources to relieve symptoms

PATIENT HAS A PASSIVE ROLE

COMMUNICATION WITH PROVIDER

Alternative Treatment

• Limited mobility, caregiver support patient's life need • Live alone without having caregiver

• Patients don't want to create more burden to family caregivers • Many patients don't have any caregiver

TRANSPORTATION/ MOBILITY

DYNAMIC WITH CAREGIVER

LIVING CONDITION

Side Effects ADVERSE EFFECTS

• Her only side effect experience was diarrhea • Experienced dizziness, couldn’t function • Lysinopril sent blood pressure sky high • She notified doctor after dry mouth , doctor changed medication • Some time she cannot hear and speak clearly • Some meds too intense and caused her to black out so now she is always careful about what she takes • Risperdal & Abilify caused shaking; Zyprexa (No issue) • What potential side effects would cause stop taking drug: Dizziness + Nausea • Alternatives prescribed by doctors caused bad side effects & she could not sleep • “Medicine would be good if didn’t have all the side effects” • Thinks cancer medicine caused neuropathy

NO SIDE EFFECTS

• Patient does not think she has ever had a side effect • She is concerned about drug safety & would stop using a drug if it had bad side effects • Alternatives prescribed by doctors didn’t work well • Initially her drugs did not work, changed prescriptions • “All the medicine will kill you”

Awareness DRUG AWARENESS • Not knowing about long-term side-effect of the drug when receiving/buying the drug • Patient are aware of the current side-effect and react to it immediately, but harder to react to the long-term side-effect • Patients only know drug by shape and & color, nothing else about the drug itself • Patients understand what each medication is for, but don't know anything other than the curative effect

ACCESSIBILITY TO RESOURCES • Various media / approaches for drug info with different level of credibility and quality • Dr. is the only source for medication info

PATIENT AWARENESS

• She understands each of her meds from doctor • She is very aware of meds and the effects that those meds have on her • Takes meds and knows the meds side effects • She knows what each meds is prescribed for • She speaks intelligently of the medication that she has and is taking • Patient was a nurse and aware of side effects • Conscious of drug interactions • Most of the time understand what each of medications is for

LACK OF PATIENT AWARENESS

• Do not know about much drug information • Patient only knows what medication is by seeing color & shape not by names or pills bottles • She is out of touch with new medication • Does not understand what each medication is for • She does not know the long term effects of the meds • Patient is not aware of anticholinergic meds • She does not search about meds ahead of time”

Usage FREQUENCY Regularly

• She should take 6 pills every morning • Important to take meds on time, takes 10+ meds daily • He takes 6 pills in the morning with food/ 4 later in the day • Takes meds every day & as needed-morning 6-8 a.m. w/fruit-evening around 5 or 6 • She takes medication every day after meal. Sometimes takes it before meal • Takes meds before & after eating, twice a day, daily • Take medicine five times a day 9, 12, 3, 6, 8 • Patient takes medication 3-4 times per day • Takes meds in the morning & before bed • “I am taking it routinely because I need it”

As Needed

• Patient takes meds as needed when experiencing pain or discomfort • Uses meds as needed but takes 1 regularly • Uses meds regularly & as needed • Uses Oxybutynin regularly, Codeine as needed • Takes OTC or non-prescribed when she needs them

QUANTITY

• Patient was on 24 different medications, Doctor decided to reduce meds • Used 40+ medications at the time

FOOD & MEDICATION

• Patient takes meds with foods, as needed • Takes medication with water • Typical breakfast hospital told her to eat cereal because of her stomach issue • Should not have too much caffeine

PATIENT / DOCTOR INTERACTION

DOCTOR RX’ING CHALLENGES

CARE SYSTEM

• Controversy in challenging other Dr’s orders.

• Benefits vs. Danger • Place burden on Dr. behavior change

• Patients go to different clinics.

Problem with consistency of medication information

FINANCIAL

PATIENT MENTALITY

• Infrequent communication between patient and doctor • Provider not trained in communication • No follow through • Provider does not know audience and needs

• Omission of info.

• Immediate needs vs. long-term effects • Concern on return of symptoms

• Financial situation of a patient affects in Rx’ing a drug • Financial situation varies greatly by patient

PROVIDERS

4. PROVIDER MAP

COMMUNICATION

Following Instructions

Behaviors

• Even if the instruction is clear, patients sometimes still can’t follow instructions.

• Patient lie about taking meds RN notices pill bottle is full

• Caregiver versus “Giver of Care” (Family vs. Hired) • Patient opinion vs. Caregiver opinion. Not always the same

CAREGIVER

Affects

Patient Needs

Dr. Getting Rx Info

Borrowing Medications

• Gets weekly announcement of journals 100s of journals a week, about 3 a week are relevant.

• His informations is reactionary to warn colleagues, not proactive.

• Physicians are not best readers don’t read notes because of time

• Patients borrow meds especially in congregated environment (assisting living) • Partners share their drugs. It depends on the accessibility.

Cognitive Impairment

Education • Medicines can take 10-14 days to take effect. Patients have hard time grasping this.

• Cultural shift rather than taking medicines to fix it.

• Using laid language to help patient to understand • Some medicine names are more catchy to remember, some are not. Might influence patient’s choice

Patient Getting Info Pref.

Time to see patients

• Patients get overwhelmed with amount of information- most do not read • TV and internet affect people but internet is more effective.

• Face to face time: About 20 min • Unless next patients happen to cancel the appointment, doctors won’t have ideally-enough time for a patient.

• There is no time for a physician to spend time separately on each patient for anticholinergics.

• Hypertension and diabetes treatment preventions are competing physicians’ attention to Anticholinergics

Drug Prescribing

Drug Use

Affects

Dr./ Patient Relationship PATIENT/DOCTOR INTERACTION • Infrequent communication between patient and doctor.

• Provider not trained in communication • No follow through • Provider does not know audience and needs

• Physicians believe there is a need so they prescribe • It’s hard to say to patient that the medication prescribed by the doctor they trusted is now part of the problem • Pushing the patient too hard might lose the patient; but if not pushing enough, geriatricians aren’t providing enough clear direction.

• Even doctors know the cognitively- impaired patient won’t understand, they still need to include & engage them.

Regulations/ Policy • Many of those anticholinergics drugs are now available OTC. • Protocol to track anticholinergic effects, only 1/10000 doctors may do that

• Does not follow through with research after sessions • Set in their ways. (Hard to change) • Does not review RN notes when there is a full list of patient meds

FINANCIAL

DOCTOR

• If patient can’t afford food, can’t expect to by meds

• Patients have their priority symptom that they want to manage first.

Organization of meds • Patient dumps pills into box. Is unaware what is for

Prolonged Use

Patient Mindset

• Drs Only look at benefit • Convenience extends use of Anticholinergic drugs.

PATIENT MENTALITY • Omission of info.

• Immediate needs vs. long-term effects • Concern on return of symptoms

Choice

Affects

FINANCIAL • Financial situation of a patient affects in Rx’ing a drug

• OTC + Anticholinergics • Patients judge negative effects of drugs quick and stop taking.

• Anti may cause day to day diminished function

Current Awareness

• People don’t see it important to mention their OTC drugs.

• Patient and their family might not be that aware of anticholinergics

PATIENT CONTEXT

Resources • There is a list of anticholinergic meds for patients to avoid • Most patients are unaware of resources available like CCA program

PROVIDER PERSPECTIVE

CARE SYSTEM • Patient go to different clinics. Problem with consistency of medication

• Clinical issue.

• Fewer than 10% know about anticholinergics

Team Care Dynamic

• Easier to worried about today rather than long term • Patient will use drug with anticholinergic properties because of immediate benefit.

• There are side effects during the behavioral change, patients have to be very motivated.

Knowledge

Med Reconciliation

Side Effects

• Drug are seen as quick solution for certain symptom • Patients thought OTC drugs must be safe to take

PATIENT

Behaviors

DRUG COMPANIES

Inquiry

• RN looks at all meds to see holistic understanding.

• Some doctors don’t want to initiate extra effort to take over other physicians job • Valued on skill, not position.

• Counseling about what medicines patient are taking in a team effort. It doesn’t have to be Dr. all the time.

Decision Making DOCTOR RX’ING CHALLENGES

OTC Drugs

• Perform Home visits based on Clinical recommendation.

• Observe patients and try to get holistic understanding of their context

NURSE/CC’S

• Patients forget to mention the OTC drugs they are taking

• Controversy in challenging other Dr’s orders.

• Benefits vs. Danger of drug • Place burden on Dr. behavior change

• The pharmacist recommends medicines, but not for what medicine not to take

PHARMACIST

• Prefer to change Rx for younger patients if needed.

• Before, doctors were criticized that not giving enough of painkillers & antibiotics, but now it’s the opposite.

• Geriatricians are not in the position to just label “this medicine is bad” because those drugs still have positive functions

Treatment vs. Prevention • It’s different conversation approach. Current conversation must be shifted

• Trust building direct with patient • CC RN also important to build trust with patient

CCA

PROVIDERS

Awareness (Education) • Fewer than 10% know about anticholinergics.

• Hospitals & other providers might not have knowledge.

• Doctors don’t see need to stop because effects are in the distant future

• High economy patients are more curious to engage in their health care process • Patients speak about the articles they read on internet

MEDICAL CONTEXT

RETHINKING BRAIN HEALTH This research was conducted as part of the course, Collaborative Action Research in Design for the MFA degree in Visual Communication Design. We partnered with the Center for Brain Care Innovation in working on the Safe And Effective Deprescribing of Anticholinergics (SEDA).

In using different research methods, we were able to gain an understanding of existing problems with a people-centered design focus. This gigamap serves as a tool to holistically understand the problems associated with Anticholinergics and the effects they have on the patient’s experience from both the patent and provider perspective. An understanding of these Problems Spaces led us to identify potential Opportunity Spaces. The major outcome from the research are the Opportunity Spaces that the SEDA team could take action on in the future.

STRATEGIC OPPORTUNITIES

6. OPPORTUNITY SPACES HOW MIGHT WE ENHANCE PATIENT BRAIN SAFETY?

TACTICAL OPPORTUNITIES

+ FAMILY, COMMUNITY SUPPORT

CAREGIVER

How might we assist patients’ support systems to play an active role in health decisions?

How might family and community support be involved in daily needs and healthy decision making?

How might caregivers help patients to take a holistic view of health and treatment options?

How might we encourage community support surrounding alternative treatment options for the patient?

How might we assist with making alternative resources available to the patients’ caregivers?

How might the patients’ family and community support be informed of the benefits that alternative treatment options can have?

How might we provide the relevant resources to caregivers to assist patients in making informed decisions?

How might caregivers encourage patients to find the balance between proper medication and healthy lifestyle changes?

How might family and community support facilitate communication of alternative options to benefit the patient?

Patients How might we assist patients to have an informed decision on their health?

How might we assist patients to develop a holistic approach to treatment options?

How might we get patients to value long-term benefits rather than short-term benefits?

How might we shift patient understanding of health from drugs to a lifestyle shift?

How might we reduce poly pharmaceuticals by encouraging patients to see the value of preventative measures?

How might we encourage patients to seek behavioral change before resorting to medication?

How might we assist patients to seek out alternative treatment options to decrease the duration of medication use?

How might we assist patients to take ownership through information?

How might we increase patient awareness of alternative treatment options?

How might we change the patient mis-perception of alternatives treatment options?

How might we assist patients to develop an inquisitive attitude toward medicine?

How might we provide patients access to relevant resources to alternatives?

How might we increase patient awareness regarding medical treatment options?

How might we encourage patients to research their medications?

How might we give patients access to relevant resources to make informed decisions?

Provider

How might we help patients to better understand which resources are safer to get information from?

How might we create a better information system between providers?

How might we establish an anticholinergic safety protocol during the patient-doctor interactions beyond Eskenazi Health?

How might we get providers to get a holistic view of patients before prescribing?

How might we provide the provider with tools that facilitate anticholinergic education?

How might we increase communication between doctors to get a holistic understanding of the patient?

How might we create more easily understandable visually communicative tools for providers to use with patients?

How might we help doctors to synchronize with other doctors across a team?

How might we decrease the prescriptions of anticholinergics to patients?

How might we help with making sure the provider has enough information about the patient and medication(s) during the short visits?

How might we balance patient assertiveness with medications and proper decision-making?