Using Formative Research to Tailor a Complex Health Literacy Program


Canyon Ranch Institute Life Enhancement Program is an evidence-based, integrative health and health literacy program that demonstrates significant and healthy outcomes across diverse cultures. This session will illustrate how formative research is used to tailor the program to local communities. Tailoring program materials to each community is a health literacy best practice. Canyon Ranch Institute Life Enhancement Program employs extensive formative research in the training of health care professionals and revision of program materials with our partner healthcare provider organizations. Participant guides are tailored through a series of narratives describing people reflective of the local population experiencing healthy changes.


Andrew Pleasant, Ph.D
Senior Director for Health Literacy and Research, Canyon Ranch Institute

Jennifer Cabe, M.A.
Executive Director and Board Member, Canyon Ranch Institute

Ana Lucero-Liu, Ph.D
Program and Evaluation Manager, Canyon Ranch Institute

Canyon Ranch Institute Life Enhancement Program

Canyon Ranch has an integrative approach to health to understand the personal and emotional connections.

They always have a local partner in every community where they work.

For any program: Engage people early and often. You will get to know them. Include their whole lives (integrative health). That will take you upstream from health care to prevention.

Finding Partners for the LEP program: You need an established health care organization to deliver the program to their people.


  1. Match program design and materials to realities of people’s lives
  2. Not a one-size-fits-all approach
  3. Tailered interventions are more likely to create change than non-tailored programs.
  4. Must be evidence-based. That’s why you need formative research.

Food desert example:

Sometimes they have to go into the community. E.g., they convinced a vendor to start selling fruits and vegetables, and said they would buy whatever wasn’t sold in the day. They had to buy back for about a week and a half. Now there are plenty of places to buy produce in that community.

In a community with a lot of unemployment: They partnered with Project HOPE to work on work skills with teens.

Canyon Ranch Institute Life Enhancement Program Process:

  1. They take the core team to Canyon Ranch for a week.
  2. They have individual interviews with audience.
  3. They determine the key concepts and messages: eg. Access to food, recreation, behavioural therapy etc.
  4. They focus on the causes of the problems for each individual.
  5. Then they recruit actual participants. And they engage with the core team weekly to check progress.

Evaluations: post, +3 months, +1 year

Find info, understand, evaluate, communicate, re-assess.

The LEP program takes a 2-sided approach by addressing challenges in both the health system AND the public.

Rather than always using the Plain Language standard of putting the most important message first, they recognize that sometimes people aren’t ready to hear the most important message. Sometimes they need to find a path to their true goal.

Rather than removing complexity, LEP works to make complexity understandable and actionable.

Use narratives: opening situation, a changing situation, a closing situation.

Stories are culture.

A good story:

  • Is understandable
  • Has context and cohesion (story holds together)
  • Has relevance to the listener’s life

So each LEP has a program guide (among other materials) that incorporates a number of unique narratives.

They test the stories with the community.

The core team comes from the participating health organization. Participants are recruited from the patient population.

Research Process

  1. Research to find issues
  2. Find a local person to represent the population
  3. Have one-on-one with members of the core team
  4. Team members report back to one another
  5. Evaluation of the “hand-off” happens onsite and through written feedback and video of the session.

A lot of information is given that is not directly related to the expertise or question of the specific person they’re meeting, but that is relevant to another person on the team.

The research process takes about 3 months.

Core team of 20. Each participant group is 100.




Integrating Health Literacy into Your Organization: Lessons Learned, Best Practices, and New Directions


Susan Cosgrove HCIF Philadelphia, PA

Cindy Hall, Carolinas  Healthcare system, 60k employees

Shelby Chapman, Children’s Hospital, Colorado

Mary Ann Abrams, Ohio State University College of Medicine, Moderator


Understand and identify effective methods for a group focussed on Health Literacy.

This was an extremely informative discussion. We recommend consulting the handouts from each of the presenters. Below are some of the key points made.

Background from each presenter:

Shelby: I was hired specifically to start a HL program. I had some high-level support. I needed to understand how the place works and how to craft messages to different groups. E.G., execs want savings, lowered readmissions and higher patient/family satisfaction. Nurses want to communicate better with patients. I need to figure out how to work with different departments on integrating health literacy.

Susan: I had to get a bunch of hospitals working together.

Cindy: I started in 2008 with no strategic plan, so we failed. So they realized they needed a system. They set a goal to train 10K nurses in 1 year. They met it. Eventually they got their board to support getting to 10 Attributes by 2020. Having champions, support from senior leadership and a plan are all key.

Question: How do you assess/measure progress?

Cindy: See tool kit handout.

  • How many teammates trained
  • Observe staff using teachback & Ask me 3 – You must observe and assess in order to hardwire behaviour.
  • Tie this data to Press Gainey and HCAPS.
  • Tell powerful stories about patients.

Shelby: We simplified discharge instructions and trained staff to use teachback to reduce 72-hour returns to Emergency Department.

It’s harder to tie to outcomes, so tracking readmissions is good to measure. But how much credit can you claim for reduction? It’s harder to measure these higher measures. Stories are also very helpful.

Susan: We gathered tons of process data on how many people trained, and how many trainers have been trained, etc. Again, it’s hard to prove that you’re responsible for this. We collect activity reports on a regular basis that tie in to the 10 Attributes. We share progress with the people who are making it.

Key aspects of your work:

Susan: The partners make success possible. Our program will offer a mix of resources and schedule trainings. We offer webinars and forums to report success. Community based organizations are important partners, such as senior orgs and refugee orgs. They are much smaller orgs than the health system and can really use seed funding. Recognize that they are the experts on the populations they serve.


  1. You really need to use improvement science techniques. Use PDSA cycles. Don’t be afraid of very small change.
  2. Be flexible: What works for one unit may not work somewhere else.
  3. Make things easy: e.g., they use a colourful schedule that mirrors the PDSA. Every project gets a checklist for each team member (trainers, managers, leaders).
  4. Hardwiring is essential. Co-branding is a wonderful thing. “Steal shamelessly but give credit.” Give them tools.

Shelby: Recognizing strengths that already exist in your organization is very important. For example, we are working with medical interpreters on improving discharge instructions.

Pilot test procedures, such as teachback. We worked with a group that was already doing a great job of teaching patients.

Include the right audiences from the start. Include patients and families. Include the clinic director when developing new materials for that clinic.

Get provider buy-in from the beginning.

How do you spread and sustain your efforts?

Shelby: It’s hardest to sustain efforts, e.g. get people to continue using teachback. We are identifying a “health literacy liaison” in the departments. We are offering once a month meetings on progress which the HL liaison attends and reports back twice a year to their department.

Susan: I have been asked to build a statewide HL coalition. We have been working on this for 2 years in addition to our work in our corner of the state. The challenge is balancing growth with continued support to regional partners.

Cyndi: Every month we has another group starting. New groups get interested and suggest things, which creates organic growth.

Right now we are working hard on Attribute #3, preparing workforce. We want to work on #9, high risk transitions, next.

Susan: Spread is inevitable with success.

Why not online?

Role-playing is a critical part of Cyndi’s training, so live training is important, but refresher training can be online.

Shelby used both live and computer-based, but people who did it online had to go through a live check-up of skills.

Susan’s team is developing their own online training modules. They have to cover a large state. They also use train-the-trainer.

Results of Future Visioning Exercises: Group Reaction


Ayelet Baron, MA Futurist, CreatingIs LLC

Sheila Repeta, MA, Senior Consultant, FutureSense, LLC

This presentation was intended to summarize the results of brainstorming sessions held with participants at the IHA conference.

Presented background and conclusions:

“Safe is risky.”

People like routine, so being a futurist is uncomfortable.

Nothing changes until the mindset changes. We don’t need more programs. We need people to come together.

  1. Bring communities together
  2. Have conversations (2-way)
  3. Bring holistic solutions
  4. Build trust and relationships

In 20th century, we looked at the middle of the bell curve. In the 21st century we need to be on the edges.

Think about the shifts taking place in the world. How much time are you spending connecting with people and having conversations? Learning about what’s going on?

How do we have a shared purpose, not just a shared vision? The hierarchy in organizations is beginning to fall apart. Managers will manage projects, rather than people.

Think of health Literacy as music: You want your audience to be engaged and excited like the audience at a rock concert.

New Model of Leadership

  1. Shared purpose (rather than dictating)
  2. Build community (rather than dictate)
  3. Collaborates (rather than competing)
  4. Two-way conversations (instead of 1-way communication)
  5. Integrating tools in business and part of work (rather than leading with technology) We will integrate what we value (e.g. instant messaging)
  6. Measure impact and makes co-creating (rather than measuring activity)

Need more working out loud: sharing, iterating, legacy, collaborating

21st century is not B2B or B2C; it’s H2H = human to human

We’re going to be looking more at “experiences” rather than products and services.

For the first time in history, we have 5 generations working together. Also, business and society are fusing.

Connectivity can help with equity.

Look for unlikely partners with which to collaborate.

Build communities.

Thriving 21 century orgs:

  1. Have Conscious Leaders
  2. Know their Purpose
  3. Becoming Whole – ask new questions to become whole as an individual and an organization – merge the person with the profession
  4. Integration – How do you integrate what you’ve learned into what you are creating?
  5. New ways of being – how do we work? Outloud? Quietly?
  6. Co-creating – meet the people you need to talk to

Results of sessions

Shared Goals:

  1. Shape the future of health literacy together by creating a shard vision that outlines a path forward.
  2. Listen in and engage in community to generate ideas and prioritize opportunities
  3. Co-create an agreed-upon plan of action

It’s like climbing a mountain: Diligent, intentional purposeful steps move us forward. Look to the side once in a while, and even backward to see where you’ve been. Don’t always look uphill, but look at where you are as well.

What they brainstormed about:

What are the opportunities? How do we remove the barriers? What does success look like in 2026?

Success is not a straight-line route. It’s a squirrely path.

Goals arrived at (words evolving):

We are empowering all people to holistic health and vitality.

Currently we live in a climate of fear and stress, scarcity and competition. We need to build on trust, awareness, and openness.

In 20th century, we started with a structure. In 21st century: We need to start with purpose, and the structure will follow.

We need more awareness of health literacy.

We need to be more open and share information, including failures.

How to remove barriers?

  1. Create awareness
  2. Provide early and professional education (both to professionals and to children for self-care)
  3. Develop skills. Ask questions. Best practices are not always completely successful. Use technology to enable skills and awareness.
  4. Be accountable – not just to the organization but to one another
  5. Connect communities – create unlikely partnerships. Share mindsets and practices internationally
  6. Remove biases from providers and clinicians
  7. Establish equity – Making sure we don’t have haves and have-nots, but that everyone has access to care.

There was an outcry from the audience:

Xanthi Scrimgeour of Communicate Health challenged the framing of the question.

Katina O’Leary of Health Lit Missouri questioned whether we can identify as a single community and have a shared vision. Lots of things happening at the same time: A journal, a credentialing process…

Presenters stressed that this is a conversation. We are ALL leaders. We all have the power to make change. Set up groups to create what you want to create in the world.

Key Success Factors:

  1. Health literacy is fully integrated and implemented in life.
  2. HL is institutionalized (not an add-on)
  3. Everyone is empowered to health and vitality.
  4. There is shared understanding beyond one-way communication.
  5. There is health equity across all demographics.
  6. There’s mutual respect and lack of stigma.

Do we need to brand Health Literacy? HL should be integrated into all curricula. Measure results. We should integrate HL education with technology.

Advocacy: Out of the box community outreach

Creating opportunities: create an umbrella association. Increase PR, track and measure. Focus on better health at lower cost and with equity.

Success factors: Increased PR. Organizations sharing messages accurately.

Closing Keynote

Closing_smRima Rudd, Sc.D., Harvard T.H.Chan School of Public Health & Michael Villaire, MSLM, Institute for Healthcare Advancement

Dr. Rima Rudd and Michael Villaire closed the conference with their final thoughts and major takeaways. Michael began his summary of the conference proceedings with noting that this was the 15th anniversary of IHA’s Health Literacy conference. This conference has always been a place to get information but also to connect and be together with our “tribe” and health literacy community.

Rima then acknowledged that there is a lot of passion in the room and it had been evident in every conversation she’d been a part of or overheard. But she also noted a loneliness of each professional in their own org/sector and how grateful we all are for the ability to catch up, reconnect, learn best practices from colleagues.

Rima questioned “Where to next?” and surmised that we don’t know where health literacy is going to go. She shared some thoughts from Ceci Doak:

  1. I want to see health literacy become more a part of and integral to the reading community.
  2. Keep up with what’s going on in the field of literacy.
  3. We need to develop partnerships

Imagining next steps can bring us to something exciting and new, somewhere that’s currently unimaginable.

In looking to the future, Michael quoted Peter Druker: “The best way to predict the future is to create it”. He noted that this is not the end result of our future visioning process, but it is a very important first step.

Feedback from attendees recognized a need for dialogue, connection, and ability to have uncomfortable discussions and to push each other’s boundaries.  The Health Literacy Discussion Listserv can serve as a safe place to have these conversations.

Another attendee suggested that we are all futurists because this field has grow so much in recent years and did not exist 40 years ago and now we need for action plans for getting to our shared goals. Everyone at this conference and in this field works tirelessly and we are all actors trying to move this field forward.

This conference is all about getting together and working together. We are also bringing new partners and advocates onboard and educating future professionals who will be part of this shared future. Keynote panelist, Susan Reid, summed up the proceedings with a saying from the late Māori elder Sir James Henare: “Kua tawhiti ke to haerenga mai, kia kore e haere tonu. He tino nui rawa ou mahi, kia kore e mahi nui tonu. We have come too far, not to go further. We have done too much, not to do more.”

Building Health Literate Organizations: A Guidebook to Achieving Organizational Change

Abrams2_smPresenter: Mary Ann Abrams

Dr. Mary Ann Abrams hosted an informational and engaging session that encouraged organizational change.  She began her discussion with a brief overview of the health literacy field and the immediate need of implementing health literacy principles into organizational structure.  She then moved into describing the 10 Attributes of Health Literate Health Care Organizations; a guide with 9 chapters dedicated to help organizations implement and spread health literacy related improvements.  Dr. Abrams began the discussion of this guide by providing the 3 questions that are asked in every chapter:  1) Why do you need to address health literacy issues in this area? 2) What would success in this area look like? 3) How could one accomplish these successes?

When using the guide, Mary Ann encourages individuals to start with the chapter that would achieve the most organizational support.  She suggests that the guide does not need to be used in chronological order and each chapter can be used as a standalone.  After this description, Mary Ann moved into group activities.  She divided the room into groups to discuss chapters 3-7 and gave specific questions to each group to report on.  Once the groups reconvened, each group reported their responses to their assigned questions.  This interactive discussion led participants to collaborate on shared experiences and resources.

Standards for Equity in Healthcare: An Organizational Self-Assessment Tool


The Task Force on Migrant-friendly and Culturally Competent Healthcare has developed a set of standards aimed at monitoring and measuring equity in health care for immigrants and other vulnerable groups. The Standards for Equity in Healthcare provide opportunity for staff and services to question what they do, why they do it, and whether it can be done better. The Standards is a free self-assessment tool which produces valuable data on your organization’s practices, its strengths as well as its gaps, enabling effective quality improvement. Data is rolled up by country. Your organization’s results are confidential.


Elizabeth Abraham, Vice President, Critical Link International

How do we make sure Health Care is accessible, effectively utilized, that health care staff have the skills and knowledge to deliver care equitably?

We have CLAS standards, but they are only recommendations. Elizabeth’s team developed a tool that organizations can use to measure these factors.

The tool was developed in Europe and uses European terms. Such as “migrant” where in the U.S. we would say “immigrant.”

It was started by the Migrant-Friendly Hospital project involving hospitals in 12 countries in Europe.

Outcomes for the Task Force hospitals:

  1. Whole organizational development
  2. Interpreting/mediation services
  3. Patient education and information
  4. Staff training

The MFH task force was charged to create a framework for measuring and monitoring for continuity.

What constitutes a vulnerable population? Examples:

  1. Migrants/immigrants
  2. Elderly
  3. Homeless
  4. LGBTQ
  5. Disabled
  6. Orphans
  7. Mentally ill
  8. Indigent
  9. Victims of domestic violence
  10. Low-literacy
  11. Low education
  12. Children
  13. Ethnic minorities
  14. People living with AIDS (PLA)
  15. Chronically ill
  16. Sex professionals
  17. People living with addiction
  18. Runaways
  19. Low-income
  20. Veterans
  21. Uninsured
  22. Indigenous people, etc.

The tool was revised after the first pilot test. The second-generation tool is now available for download.

It’s a Free tool: If you submit results to the Task Force, they will show how you compare with other organizations in your country and compared to Canada and some other countries.

Standards for Equity that the tool is designed to measure:

  • Equity in policy
  • Equitable access and utilization
  • Equitalble Quality of Care
  • Equitable Participation
  • Promoting Equity

In 2012, 45 orgs participated in the pilot test. They gave feedback on the tool.

The second pilot was carried out in 16 countries and 54 organizations.

It takes 2-3 meetings to get through the 7 phases of the assessment.

  1. General information
  2. Identify and describe areas of improvement.
  3. Describe an action plan.

This self-assesment tool has not been used in the U.S. You are invited to download the tool and use it. If you think you can get your organization to use and report from the tool, or if you would like more information, contact Elizabeth Abraham at or

See also the handouts for this presentation, which include the Self-Assessment Tool.