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AASPIRE Healthcare ToolkitDORA M RAYMAKER, PHD, PORTLAND STATE UNIVERSITY

CLARISSA KRIPKE, MD, UNIVERSITY OF CALIFORNIA SAN FRANCISCO

Disclosures

Dr. Raymaker and Dr. Kripke and our families have no relationships with commercial interests.

Introduction Dora:

Research Assistant Professor @ Portland State University

Service/intervention research with disability populations

Co-director Academic Autism Spectrum Partnership in Research and Education (aaspire.org)

Autistic self-advocate / disability rights advocate

Clarissa:

Clinical Professor, Family and Community Medicine @ University of

California San Francisco

AASPIRE Academic partner

Director of Office of Developmental Primary Care/CART Services

AASPIRE Healthcare Toolkit

Academic Autism Spectrum Partnership in Research and Education (AASPIRE) - founded 2006 Dora & Dr. Christina Nicolaidis

Team of academic researchers, autistic individuals, family members, healthcare providers, disability professionals

Partnership with Portland State University, Autistic Self Advocacy Network, Autism Society of Oregon, Syracuse University, Indiana University, Oregon Health & Science University, members of the Autistic community at large

Mission: equitable inclusion, community relevance, positive change for people on the autism spectrum

AASPIRE Healthcare Toolkit: multi-year research project to improve healthcare access and quality for adults on the spectrum

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Agenda

Approach – community based participatory research

Toolkit development – barriers to healthcare and research findings

Toolkit content – using the toolkit / demo and recommendations

ApproachCOMMUNITY BASED PARTICIPATORY RESEARCH

Community Based Participatory Research

An approach, not a method

Can be used with any research methods

Response to problems of traditional research:

Ethics / power / trust

Inclusion of marginalized populations

Validity of methods / results

Interpretation of data

Implications / usefulness of findings

Equal partnership between academics and community members

Approach can be used outside of research!

CBPR Principles1 Acknowledge the community as a unit of identity.

2 Build on strengths and resources in the community.

3Facilitate a collaborative, equitable partnership in all phases of the research.

4 Foster co-learning and capacity building among all partners.

5Balance knowledge generation and intervention for the mutual benefit of all partners.

6 Attend to both local and ecological perspectives.

7 Develop systems using a cyclical and iterative process.

8Disseminate results to all partners, and involve all partners in dissemination.

9 Commit to long-term processes and group sustainability.

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Community Based Participatory Research

Nicolaidis, C., Raymaker, D.M., et.al. (2011)

Considerations for Equitable Practice

Power-sharing

Shared leadership

Trust

Processes and structures for

Communication

Shared decision-making

Feedback and adjustments

Other accommodations

Will look different for each group

Communication Processes for AASPIRE

List serve

Text-based group chat

Structured communications

Jargon-free—or at least jargon-explained!

Shared Decision-Making Process

DiscussionCall for fingers

how many? Passed

Discuss / Explain any 3, 4, or 5

Generate new ideas

Call for fingers

how many?

all1 or 2

any 3, 4, or 5

all 1, 2, or 4any 3 or 5

Process

Decision

Start/Stop

relationship

KEY

1) I love it!

2) it’s fine.

3) I have more questions. (and what they are)

4) I don’t like it, but I won’t block it. (and why)

5) I dislike it so much I can’t live with it. (and why)

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Feedback Processes

Keep / Change exercise at the end of meetings

Check-in discussion at the end of meetings, at projectmilestones, or when there’s been a change

External evaluation / formal evaluation

Accommodations Provide what people need to work; a few examples:

ASL interpreter

One-on-one meetings

Personal assistance during meetings

Sensory accommodations (lights, sounds, providingfidgets, etc.)

Extra processing time

Alternate formats for materials or communication

Money for child care, transportation

Ask your collaborators what they need and be willing tomake changes based on feedback over time

These Processes Work Outside of Research!!

Community Advisory Boards – Example: Early Assessmentand Support Alliance (EASA) Young Adult LeadershipCouncil

Product development (like the AASPIRE HealthcareToolkit website!)

Person-centered planning

Healthcare settings

Attending to Inclusion Pays Off

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Toolkit DevelopmentBARRIERS TO HEALTHCARE AND RESEARCH FINDINGS

Barriers to Healthcare 66 yes/no items: transportation, availability and access

to services, insurance, access and accommodations infacilities, social/family/care-giver support, individual,communication

Online survey, Autistic (N=209), non-autistic withdisabilities (N=55), non-autistic / no disabilities (N=173)

Autistic group experienced different and greater barriersto accessing healthcare

Emotional regulation

Patient-provider communication

Sensory sensitivity

Healthcare navigation

Top Barriers to Healthcare

Fear or anxiety

Not being able to process information fast enough to participate inreal-time discussions about healthcare

Concern about cost

Facilities causing sensory issues

Difficulty communicating with providers

Considered accommodations for these and other top barriers in the toolkit.

AASPIRE Qualitative Study

Semi-structured, open-ended individual interviews

39 autistic adults and 16 supporters

Focus on understanding healthcare experiences andhow to improve them.

Conducted in person, via telephone, email, or IM chat

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Nicolaidis et al, JGIM 2015

Patient-level Factors: Verbal Communication

“They asked him, ‘On the level of one to ten, where is your pain?’ ...He said, ‘Um, how do you weigh your pain?’”

“It is always hard for me because I don't have the words that normalpeople have to communicate with. I don't always know how to respond properly to questions from health care providers.”

Patient-Level Factors: Sensory Sensitivities

“The lights in the office are very bright and that is exacerbated by the white walls. Sometimes the waiting rooms are crowded and Icannot filter out the background of people talking or shuffling magazines. I feel disoriented by being led down long hallways to different rooms.... I am not able to bring up my concerns because it is all I can manage to figure out what the doctor is saying so I can respond to his questions. But he refills my usual meds and I go on myway.”

Patient-Level Factors: Challenges With Body Awareness

“Like when they ask if pain is shooting or stabbing or burning, it's like, I don't know, it just feels funny.” Another explained: “The problem is it is difficult for me to isolate specific sources of pain and identify duration and intensity. It's sort of like the equivalent to white noise.”

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Other Patient Level Factors

Need for consistency

Slow processing speed

Atypical non-verbal Communication

Challenges with organization:

“with my autism it is very difficult for me to understand and followall the different appointments and procedures I have to schedule and how to do it, and no one will help me since apparently people magically become competent at these things before they turn 21.”

Provider-Level Factors: Providers’ Lack of Knowledge

“I have gotten the distinct impression that all of the physicians I have seen have had no clue what autism means or entails or how that should change how they treat me.”

“I thought doctors would understand my autism. I thought saying, ‘well, I have autism’ would be a suitable explanation for why I have age-inappropriate troubles with managing my healthcare, but it's not.”

“People attribute behaviors to the autism rather than looking for an illness first. Oh that's her autism, she's banging her head against the wall because that's her autism. Nobody thinks, ‘Oh gosh! Maybe she has a migraine!’ ...They forget to realize that she can't verbally express it so she uses behavior instead.”

Provider-Level Factors: Assumptions about Patients’ Skills or Needs

“I have used my Alphasmart [portable communication device] when my speech is too slow or difficult to understand for medical appointments. Some of the doctors have been really great, but others have acted really condescending when I used it, also immediately assuming I couldn't be alone, had to have had parentsthere too ... So I try to go without, even when my speech is in a poorer shape.”

“Usually when I demonstrate a large vocabulary or some fundamentals, my needs especially around communication are then ignored. My choice is then to pretend to be less intelligent and accept their infantilism, or to be confused, frustrated, and stressed out.”

Provider Level Factors: Willingness to Communicate in Writing

“I prefer and find it easier to communicate in text.... But with every doctor I speak to, they wave away the note-card and look at me to ask the same question I have just answered and interpret my confusion as my being non-compliant with the medicine. I wish health care providers would read the notes I make for them.”

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Provider-Level Factors: Accessible Language

“But they talk to him in the same words that they'd use if they were talking to me.... If they're gonna talk to him... they need to say it how he can understand it.”

“Just because I might need more information to understand things, it doesn't mean they can or should just talk to me like a child or leave me without knowledge of my own health. My body is my body, and my experiences and wishes about my body are MINE TOMAKE!”

Provider-Level Factors: Willingness to Accommodate

“And they were very happy to accommodate all of her sensory and communication needs, including communicating with her by email ahead of time, and giving her descriptions of who would be there, what the process would be, how long it would take... I believe that they even supplied her with photographs of all of the staff and their names.”

Provider Level Factors: Skill in Incorporating Supporters

“The triage person kept speaking to the person who brought me rather than me. The lady could have spoken directly to me.”

“[my mother] would say the things, or answer the things that I don't know--like insurance things--and I would answer other things”.

System-Level Factors: Availability of Supports / Complexity of HC System

“I wish they understood how easy it is to get confused with all the administrative hoops a patient has to jump through to get help. It sounds pathetic at my age, but I need someone to hold my hand. Idon't know what I am doing. But nobody understands that I need that, and there is definitely nobody willing to do it.”

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System Level Factors: Accessibility of Facilities

“It really doesn't take a whole lot to modify things so that you can meet the needs for most of the people on the spectrum. Right now, those offices are set up for the physicians. They are not set up for the patients.”

System-Level Factors: Discrimination and Stigma

“I am very careful when it comes to disclosing my [autism] diagnosisto my healthcare providers, because I fear it's gonna affect my healthcare.”

System-Level Factors: Other Social Determinants of Health

Poverty

Health insurance

Employment inequity

Additional input from PCPs Brief survey of 129 PCPs:

73% felt uncomfortable in their ability to providequality care for adults on the spectrum

84% no plans to seek additional training on ASD

88% would accept autistic adult in their practice

If new autistic pt, <50% would attend CME

82% would search information on the Internet

98% would read customized report about ptneeds

99% would appreciate patient’s effort

Qualitative interviews with 9 PCPs

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AASPIRE Healthcare Toolkit

Developed collaboratively by the AASPIRE team

Content and form based on our study findings and inputfrom community-academic team: informed what totarget and the types of tools and resources to include;CBPR iterative development process.

Web site for providers and patients withworksheets/checklists/resources/information & AutismHealthcare Accommodations Tool (AHAT)

Development and Testing of the Autism HealthcareAccommodation Tool (AHAT)

Cognitive interviews

Test re-test reliability study

37 Toolkit Evaluation Quantitative and qualitative, one group of participants,

pre-post intervention (using AHAT and web site), in real-life setting.

Autistic patients completed pre-survey (either directlyor via a supporter).

Used the AHAT to create personalized report.

Could choose whether to have us send to PCP.

Access to toolkit

One month later –post-survey of autistic participant,and if applicable, PCP

Participants in Toolkit EvaluationAutistic Adults N=170

Study ParticipationParticipated directly, independentlyParticipated directly with supportParticipated via proxy

70.2%10.2% 19.4%

Age: mean (range; std) 36.5 (18-68; 12.9)

Gender - Male 44%

Living SituationOwn place (rent or own)With family Group homeOther

56.9%34.5%6.3%2.3%

Requires assistance to receive healthcareAlways or oftenSometimesRarely or never

32.3%31.1%36.6%

Patient and Provider Impressions

Evaluation Item Autistic Adults (N=126)

Easy to understand – most or almost all items

95%

Important – Somewhat or very important 97%

Useful – Somewhat or very useful 95%

Would you recommend Toolkit to a friend -Yes

92%

Would you recommend Toolkit to healthcare provider - Yes

95%

Evaluation Item PCPs (N=41)

Useful – moderately or very useful 82%

Would you recommend Toolkit to other patients - Yes

87%

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Change in Outcomes between Pre- and Post-Intervention

Outcome N Pre- Post- P-Value

Barriers to healthcare

108 4.07 2.82 <0.0001

Healthcare self-efficacy

98 37.92 39.39 0.016

Patient-provider communication

43 30.91 32.63 0.027

Data only shown for autistic adults who participated directly (with or without support) in both pre- and post-tests and did not have any missing data on the outcome measure. Pt-Provider communication only asked if saw PCP.

Qualitative Themes - Patients

A means to clarify and communicate needs

“Filling out the survey helped me clarify some things ofwhich I was only vaguely aware. It also helped putinto words things I am unable to communicatebecause I cannot think of the right words.”

Qualitative Themes - Patients

Validated their experience and empowered them tobetter self-advocate

“It was validating. Previously, I felt that some of thethings I was doing, like bringing support with me, wasa sign of weakness. Now, I view it as part ofaccommodation. It also gave me some ideas ofthings to try that I hadn't thought of.”

Qualitative Themes - Patients

Improved their self-efficacy, especially by helping themprepare for visits

“It takes away a lot of my uncertainty about theappointments. Whether I'll bring up everything I wantto bring up, whether I asked the right questions aboutfollow up care, and being prepared for talking to newdoctors. It's a game changer for me.”

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Qualitative Themes - Patients Most – enthusiasm about effect on provider:

“Y'all sent things to the doctor so MAYBE THIS TIMEhe'll listen to me.”

Minority voiced concerns about PCP response:

“When I asked my psychiatrist to not use airfresheners she said she had to or else her officesmelled, and she acted like it was a really bigburden on her. I think that if I handed your niceletter to my physicians … they would think I amasking too much of them. I already stand out; Idon't want to stand out more.”

Examples of Actual Changes

“I brought a copy of the accommodation letter in casehe had not received it. He had and it was alreadyscanned into his computer. He went over it with me anddid what had been recommended.… I was reassured bythe doctor taking the accommodation letter seriously….I felt like some of the difficulties I experience wereaddressed and that they wouldn't have been had I notmade use of the Healthcare Toolkit.”

“I think the Toolkit validated that my concerns and mydaughter's ‘issues’ (sensory, behavioral, etc.) which oftenpresented during medical appointments were typical forASD patients and should be accommodated.”

Qualitative Themes - PCPs

Most appreciated Toolkit Utility

“Extremely helpful. What I needed were specific, butconcise suggestions regarding how to make mypatient more comfortable. The report will be in herchart and I will use it at each visit.”

Some felt they didn’t need it (knew pt well)

Two providers said they didn’t have time for it.Toolkit ContentUSING THE TOOLKIT / DEMO AND RECOMMENDATIONS

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Toolkit Demonstration

http://autismandhealth.org

Home Page 50

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Autism Healthcare Accommodations Tool (AHAT)

Fill out a survey

Computer uses answers to create apersonalized and healthcare provider-friendlyreport of accommodations

Sample AHAT Item 54

Office of Developmental Primary Care

http://odpc.ucsf.eduCommunication Access

Communication is the foundation ofpatient care

Everybody communicatesFind a way!http://odpc.ucsf.edu/communication

s-paper

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http://odpc.ucsf.edu/communications-paperConclusions

CBPR process resulted in a highly accessible and usablehealthcare toolkit.

Toolkit has the potential to decrease barriers tohealthcare and improve healthcare self-efficacy andpatient-provider communication.

Changes may have been driven by changes in self-awareness and self-advocacy, as well as changes inpatient and provider behaviors.

Implications

Please use the toolkits! – Available for free atwww.autismandhealth.org;http://odpc.ucsf.edu/communications-paper

Tools may also be helpful to other patients withdisabilities or low health literacy.

Healthcare systems should find ways to incorporate suchtools into clinical practice.

Other groups attempting to develop interventions formarginalized populations should consider using a CBPRapproach.

Thank You

AASPIRE Team Members Autistic Self Advocacy Network

The Oregon Commission on Autism Spectrum DisordersHealthcare Subcommittee

All the study participants and supporters Funding was provided via a grant from the National

Institute of Mental Health (R34MH092503)

Thank you to Golden Gate, Alta California, Far Northern,Redwood Coast and North Bay Regional Centers, andthe WITH Foundation

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Thank You!

AASPIRE Healthcare Toolkit: http://autismandhealth.org AASPIRE: http://aaspire.org

Office of Developmental Primary Care:http://odpc.ucsf.edu

Dora M Raymaker draymake@pdx.edu

http://doraraymaker.com Clarissa Kripke

Clarissa.Kripke@ucsf.edu