Patient Engagement Resources: Care Maps And Clinical Trials

hello I'm John Dimmesdale for Health

Affairs in the search for more effective

health care researchers have discovered

patients themselves hold a vital key

when patients and their loved ones are

fully involved in care decisions when

their input and opinions are solicited

and taken into account by care providers

research shows that health outcomes are

more likely to be successful and even

can be less costly so what resources can

patients with little or no medical

training call upon to act as health care

partners we may have more support

systems than were initially aware of

take the care map for example it was

developed by Kristen Lin a mother who

was overwhelmed trying to cope with all

sorts of medical advice and treatment

recommendations for her son Gabe's rare

genetic disorder so a care map is a

picture of all of the people who we rely

on to help care for my son with Gabe and

family in the center health care

providers are in blue school resources

in red support groups and turquoise it's

got seventy bubbles it's so complex were

you surprised by that I was very

surprised to see how complex it was when

I was done and that was my first

reaction to seeing it when I put the

pencil down and I leaned back and looked

at the whole thing my first reaction was

oh that's why I never get to finish

folding laundry I was kind of a spider

in a web making sure that all of these

people and organizations had the right

information so that they could you know

make good decisions and help us make a

decision so

after I made the care map I decided to

share it with my son's doctors and there

was one doctor who I normally who we

normally met with every four months and

within a minute of seeing it she sort of

just exclaimed you don't have to come

back in four months come back in six

months because for her she really began

to understand that she wasn't the only

person who we were seeing Kristen Lin's

care map concept is growing dr. Richard

Antonelli a pediatrician at Children's

Hospital in Boston is spreading the care

mapping gospel to other families such as

Mary vo knows who cares for three

children with special medical needs I've

been intrigued by the use of the care

map because when you come to me as a

clinician I have my set of questions and

if if you have a care map you're able to

show me but here's what the rest of my

existence look like star Antonelli so

tell me a little bit how how have you

experienced the implementation of the

care map in any of your clinical

encounters for behavioral health I

believe it's an it's an eye-opener and I

think it's an eye-opener of there's been

so many things that you've tried to do

or you've tried to find you've tried to

find the support so those providers are

just starting to communicate more with

the medical domain for with families so

I think we're meeting in the middle on

that so that specifically it's an

education tool

another way patients can be more

proactive in their own care is to

participate in clinical trials Linda

Morgan knows that Morgan is an Asheville

North Carolina pharmacist who's been

battling Parkinson's disease for nearly

ten years

at first she says her doctor was

skeptical that participating in clinical

trials would yield any benefits when I

was first diagnosed with Parkinson's I

wasn't I wasn't encouraged at all if

anything I was discouraged to take part

in my treatment I you know because I was

really interested in trials that may be

available and he was so a good sep

morgan rejected his advice and has since

participated in over 20 clinical trials

she also runs a local support group for

parkinson's patients and reviews funding

proposals for several research centers

including the patient-centered outcomes

Research Institute which emphasizes the

importance of bringing experiences like

hers into the research process to

produce the information that patients

and clinicians need to make informed

decisions I was on a committee of four

and there's one patient two scientists

another stakeholder and this committee

review team of four would review the

proposal and one of the main questions

we asked patients ask ourselves would

this make a difference if so if I was in

the doctor's office would this make a

difference to me well now it's very

rewarding that was probably the best

thing I've ever done the most rewarding

as a patient because I really felt my

what I had to say made a difference

back at Boston's Children's Hospital dr.

Richard Antonelli says the new focus on

patient activism in healthcare is

already showing results I think we

actually have some early profound

evidence around authentic patient and

family and caregiver engagement the

evidence shows that patients are much

more likely to be adherent to a care

plan

that they have helped to formulate

second the evidence is strong that shows

the more patients families and

caregivers know about their own care

needs the more likely they will be

articulate in understanding what

motivates or incentivizes them to do

better self-management while the growing

evidence for improving health outcomes

through patient engagement is compelling

there are special challenges to

partnering with patients in inner cities

and in rural areas of the country in our

next video we'll look at some extremely

innovative ideas for bringing patients

and doctors together under less than

ideal circumstances I'm John Dimmesdale

for health affairs

you