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Health Literacy to Patient Engagement

Posted: 12 Jan, 2015   Recommendations: 21   Replies: 87

The focus on developing health literacy initiatives is crucial in improving health care delivery, but enhancing patient knowledge must lead to engagement and action in order to improve health outcomes. While many tools exist to aid providers in ensuring patients have a better understanding of their health conditions and treatment options (see our previous Expert Panel on implementing health literacy initiatives), many providers and practices lack the ability to determine if that increased knowledge will lead to action.

Fortunately, tools like the Altarum Consumer Engagement (ACE) Measure, Patient Activation Measure (PAM), ReEngineered Discharge (Project RED), and the Merck Adherence Estimator are available to measure patients’ management of self-care post clinical assessment. The development of these and other tools can better measure the effectiveness of health literacy initiatives and ultimately improve health outcomes.

In this virtual Expert Panel, panelists will share their experiences using these and other methods of measuring the effectiveness of health literacy in enabling patient self-care and navigation of the health care system. We are please to welcome our panelists for this discussion:

• Tom Bauer, MBA, RT®, HFA - Corporate Director Health Literacy and Patient Engagement at Novant Health
• Heesun Chang - Senior Manager of Business Intelligence at Sanofi
• Chris Duke, PhD - Senior Analyst with Altarum Institute’s Survey and Patient Engagement Research Group
• Wendy Lynch, PhD - Director, Altarum's Center for Consumer Choice in Health Care
• Bruce Sherman, MD, FCCP, FACOEM - Medical Director with the Employers Health Coalition of Ohio

Our panelists will offer insight into the following questions:

1. What kinds of efforts have you implemented in your work to bridge the gap between health literacy and patient engagement?
2. How do you address the obstacle of time in patient education? In what ways is technology leveraging the transfer of knowledge?
3. What are the specific patient engagement outcomes you are looking for as a result of health literacy initiatives? Patient satisfaction, adherence to treatment plans and self care, etc?
4. What are the best methods for measuring patient engagement? What kinds of metrics or indicators do you find most informative?
5. What changes have you implemented in your practice to support patient involvement? How do you ensure these are sustainable?

This panel is part of our US Communities Initiative, which is supported by the Agency for Healthcare Research and Quality (AHRQ), and aims to foster discussions between health care professionals on evidence-based practices, and translating these practices across disparate settings, to improve health care delivery in underserved populations in the US.

In an effort to understand the impact of our Expert Panels, we’ve created a short (4 question) survey. Your responses are greatly appreciated—please take the survey before the discussion begins:

We look forward to a rich discussion next week – please join the conversation and share your questions or comments!



Sudip Bhandari Replied at 10:03 AM, 12 Jan 2015

In preparation for next week's discussion, I want to share some resources that might be of interest.

Attached resources:

Madhuri Gandikota Replied at 10:52 AM, 12 Jan 2015

Thanks Marie for this opportunity.
Sure, I look forward to pariticipate in this discussion.

Zeca Calima Replied at 11:17 AM, 12 Jan 2015

hello, greetings to all.I would like to have info on examples of strategies to improve health literacy to patients that have been effective in low income countries like in an African context?

Terri Ann Parnell Replied at 11:44 AM, 12 Jan 2015

Hello all,
Thanks for addressing this important topic.
Looking forward to a stimulating discussion next week!

Felix Rosario Teimoso Replied at 2:34 PM, 12 Jan 2015

Dear Marie!
Thank you for the message! That's a very important topic to be discussed,
and I'm happy to participate!

Sudip Bhandari Replied at 11:54 AM, 13 Jan 2015

Zeca, great question! GHDonline had some discussions in the past around strategies to improve health literacy in low income countries. Here are some resources (GHDonline discussion and replies) that might be helpful.

Attached resources:

Thomas Bauer Replied at 3:29 PM, 13 Jan 2015


Thank you for signing joining this discussion next week

I am looking forward to a lively discussion about bridging the gap from health literacy to engagement... In past panels we have had the privilege of having worldwide audiences of passionate health care professionals participate in our discussions on addressing low health literacy

• What has worked for you?
• What has not been effective in engaging your patients? Past pilots or trials
• What are you piloting?
• What questions would you like to ask?

Tom Bauer

Evelyne MUKAKABANO Replied at 4:03 PM, 13 Jan 2015

Thank you panelists

Through my daily work ,we try to educate patients from the hospital entry
We use posters to show patients 'rights and responsibilities
In wards we systemicaly plan sessions on various topics before Doctors

A/Prof. Terry HANNAN Replied at 7:52 PM, 13 Jan 2015

This is such an important topic so regardless of what is discussed I suspect we will all learn something of importance on patients health literacy.
The topic has been "hot news" in the last 12 months with several publications being posted on the web. I am looking forward to being "educated".
Dr Terry Davis's slides with her permission.

Attached resources:

Wendy Lynch Replied at 10:25 AM, 14 Jan 2015

Hello Fellow Panelists and Colleagues,

We're looking forward to this discussion and are interested in understand more about how people are viewing the issue of engagement.
Our data tell us there are multiple dimensions to being engaged, some of which deal with one's activities outside of the health care system and some in the system.

Some call specific activities (e.g.using a patient portal) engagement... others call complex self-management (managing one's HbA1c) engagement. It will be fun to explore the complexities of this issue.

Thanks for the opportunity to be involved.

Bonventure Ameyo Masakhwe Replied at 1:33 PM, 14 Jan 2015

An interesting topic. Looking forward to it.

Madhuri Gandikota Replied at 1:37 PM, 14 Jan 2015

Thanks Wendy for the mail and information. A very interesting topic for
many of us.
Looking forward for it.

Cheryl Lynne Galler Replied at 8:19 PM, 14 Jan 2015

This is an important topic. I look forward to learning more.

Ignacio De Gabriel Hernández Replied at 1:04 PM, 16 Jan 2015

Pienso que antes de implementar cualquier herramienta de trabajo,que sea benéfica para la comunicación entre pacientes y proovedores de servicios sanitarios,quisiera saber cuánto estan dispuestos nuestros pacientes a invertir en tiempo y en recursos económicos--¿ha de ser mejor tanta información al paciente o es la diciplina parte importante en el tratamiento de los pacientes y finalmente establecer responsabilidades compartidas en los diversos tratamientos? Gracias por su tiempo

Marie Connelly Replied at 1:29 PM, 16 Jan 2015

For those who don't read Spanish, we wanted to share a quick translation of our colleague Igancio's recent reply:

"I think that before implementing any system that improves communication between the patients and service providers I would like to know how much our patients are willing to invest in time and money. Is having all of this information better or is discipline an important part of treating patients and finally establishing shared responsibilities in the different treatments?

Thanks for your time,"

Many thanks to GHDonline Moderator Joaquin Blaya for translating this post.

We look forward to hearing your input on the question Igancio has raised.

Marie Connelly Replied at 1:33 PM, 16 Jan 2015

As we begin preparing for the discussion next week, I wanted to highlight this earlier post from panelist Tom Bauer (

We hope you'll considering sharing a short reply on any of the questions below:

• What has worked for you?
• What has not been effective in engaging your patients? Past pilots or trials
• What are you piloting?
• What questions would you like to ask?

Looking forward to a rich discussion next week!

Lawrence Wasserman PhD Replied at 11:51 PM, 16 Jan 2015

I established Center for HealthCare Technology as I am working in ASIA and AFRICA but located in Washington DC ares. Served WHO and US Public Health Service. In essence health education based on my 25 years experience has been neglected its treatment society not prevention or raising awareness of the individual or patient. Theres no money in prevention or health promotion so why do it? says health professionals.

Inge Corless Replied at 12:30 PM, 17 Jan 2015

I look forward to this discussion. I have been engaged in a study on barriers to HIV education with health literacy being one of the factors identified by the focus group of HIV nurses, social workers, and pharmacists. The purpose of the focus group was learn more about health literacy but the health care professionals noted a variety of other factors that impinged on their ability to provide education. As I said, I look forward to this discussion and all I will learn.

Evelyne MUKAKABANO Replied at 12:59 PM, 17 Jan 2015

My interest is more focused on impact of first HIV + status disclosure
to children between 7 to 10 years old

Yudha Saputra Replied at 9:27 AM, 18 Jan 2015

Hi Everyone!

Thank you so much for inviting me into this great discussion. Sure it is a honor. I love the words "to improve health outcomes". Improving health outcomes means we have to deliver everything with good quality. Measure and make sure the outcomes would be not as easy as the words, but its challenging. When I joined PH555x on edX back there, we can use inter-disciplinary approach to solving health problems. All that approach are dedicated to improve the quality. One of the institution that really concern about improvement is IHI (Institute of Healthcare Improvement). Just now, I also joined course by MITx called U.Lab. I do not know this will help and even match or not, but there are Level of Listening. It's kinda more like leadership approach. Maybe the quality to do the best medication, could start from the quality of listening to the patient. I'm still zero in this topic but I want to learn. I looking forward for this discussion.

Once again, thank you.
Have a great day!

Attached resources:

Karen Ivantic Replied at 9:01 PM, 18 Jan 2015

I have had a keen interest in health literacy for most of my career and have had the opportunity to pilot efforts to help nurses and community health workers in East Africa develop relevant health education materials and tools for their own patients with HIV and AIDS. In stateside clinical practice I am particularly interested in the intersection of health beliefs and technology based education tools. Recently I have observed a number of challenges as clinicians try to locate and adapt new tools into practice. For example in a large AIDS Service Organization (ASO) medical clinic there are no longer usual health education materials. Clinicians are encouraged to suggest web sites a patient may visit to learn more. Others will clip in tools from the EHR library and print out an after visit summary, which often is found later in waste baskets when patients do not want to leave the building with materials indicating an HIV diagnosis. Further the EHR tools tend to be generalized and may not be relevant to the particular patient. I look forward to hearing from the esteemed panelists and exploring ways to improve options across populations.

Wendy Lynch Replied at 9:12 PM, 18 Jan 2015

Hello Everyone,
We're happy to begin the discussion. To share some background, Chris Duke, PhD (another panel member) and I work in the Altarum Center for Consumer Choice in Health Care. We've been doing bi-annual surveys regarding consumer engagement since 2011. To find them, you can go to one of the links below.

You'll see that American consumers generally WANT to play an active role in their health and health care, but in practice, they have limited confidence and skills to do so. Few investigate safety or quality, and fewer than half have ever asked about the price of care before they receive it.

Our team developed a new survey measure: the Altarum Consumer Engagement (ACE) Measure, in order to provide a multi-dimensional of engagement because we felt that existing measures over-simplified the complexity of this concept. It includes four factors -- commitment (to one's health habits), ownership (personal responsibility for our own health), informed choice (seeking and using health information) and navigation (knowing how to work within the health care system). These factors are predictive of a variety of health-related behaviors, and we continue to add to its validation.

Best of all, the ACE is available at no cost to users -- as long as they share data. So we hope to create a shared community of those interested in improving engagement. (see attachment)

We look forward to more discussion this week!

Attached resources:

Madhuri Gandikota Replied at 6:42 AM, 19 Jan 2015

Dear All,

We are honored and humbled to be part of this health discussion.

I take this opportunity to introduce myself as Madhuri Gandikota, founder
of a startup company Tapasvi Clin-MolBio Solutions Inc. Tapasvi Clin-MolBio
Solutions is incorporated in August 2012, in the state of California.

We are now sharing one of the Pilot we developed in collaboration with
SAP-Co-innovation Labs.

This pilot solution is an “Obesity Data Model” which has been given a fun
name called as DesignerData 1.0 a fully functional minimum viable product.

DesignerData 1.0 is an “Enterprise Software solution” unlike many solution
or applications available in the market.

*Useful Links:*

Our Business Collateral :

*Our Product Demo: <>.: *

*Please watch out simple product demo to see the minimum viable product. We
can do much better visuals and customization for patient engagement if we
have funding. *

*We are now looking for business, funding opportunities, to improve this
product or provide services. *

*Looking forward for positive inputs and discussion. *



Thomas Bauer Replied at 9:00 AM, 19 Jan 2015

Good Morning and welcome to our panel discussion this week. I am glad you have joined us for what I hope is a thought provoking and wonderful exchange of lessons learned in this essential and evolving area of interest in public health.

Please consider this week to be an opportunity to brainstorm, create and steer the course of this conversation and research in our shared passions. As I write this I think about Margaret Mead’s quote...Never believe that a few caring people can't change the world. For, indeed, that's all who ever have.

A little about my work in health literacy and patient engagement ....Having joined Novant Health nearly six years ago; .I have had the pleasure of leading Novant Health’s research of methods to improve low health literacy. The use of Ask Me 3™ was optimized by using the three questions as the framework for clinical conversation. This application technique is in contrast to the traditional method of patient facilitation and was termed “our special sauce.” When this variation of Ask Me 3™ with the Teach Back methodology was implemented we experienced the following:

• 18% increase among hospitalized stroke patients in understanding their medical condition, treatment plan and why the treatment plan is important
• 220% increase among congestive heart failure patients in understanding their care plan (Three-year study initiated by Novant Health Senior Leadership Academy)
• Significant reduction in preventable readmissions for patients with congestive heart failure at Presbyterian Hospital, Charlotte, NC (Three-year study initiated by Novant Health’s Senior Leadership Academy)
•Significant enhancement in patient satisfaction in communication matrixes with clinicians and providers in numerous clinical settings

Due to the significant impact on clinical outcomes and patient satisfaction, the enhanced Ask Me 3™ and Teach Back tactics were deployed and hardwired creating a foundation of health literacy practices across 13 hospitals and over 17,000 providers, clinicians and staff members.

During the course of this week we will discuss best practices in health literacy and how to move from engage, inform to activate..

To begin; what have been your wildly successful pilots/implementations in improving the transfer of knowledge? What have you always wanted to pilot? What has not worked and why?

Let the conversations begin

Charles Lee Replied at 9:48 AM, 19 Jan 2015

Hi Everyone,

I'm also honored to join this discussion as well. As a health care provider, an immigrant, and a health information technology entrepreneur, one of the harder challenges I saw was engaging patients with language barriers. This led to my eventual interest in health literacy (which is universal across languages) and developing solutions that could reach underserved populations in our local communities.

Simplistically, I see patient engagement as a combination of personal skill and motivation. If you can think of health literacy as a personal skill with 3 interrelated part (as defined by the Institute of Medicine), it is basically:

1) the ability to gather/find appropriate health information,
2) the ability to read and understand the material, and
3) then acting appropriately on that information.

If patients have difficulty finding/sifting, reading/understanding, and knowing what to personally do, this is an obvious obstacle to patient engagement. To more effectively engage patients, healthcare organizations need to start by providing information that is easier to read, understand, in the patient's language, and consolidated to focus on key messages with personal action items. Because patients have varying health literacy skills, the more organizations can do to make materials accessible, the more likely that patients will become engaged. This is the health literacy skill part.

The next part is the motivation. Our healthcare providers do a relatively poor job understanding our patients as a person. "What are they interested in?" "What are their priorities?", "Can they afford what we are recommending?", etc. Understanding the patient in context, tailoring interventions, and providing a supportive structure (e.g., patient navigators, etc.) would also improve patient engagement. We need to better train our upcoming professionals to ask these types of questions to have them see things from the patient's perspective.

Just thought I'd put this out there for discussion.


Heesun Chang Replied at 10:17 AM, 19 Jan 2015

Hello, Everyone,

I'm very excited and also honored to join this distinguished members to discuss the important topic of improving patient engagement. My background is kind of unique in that I work in the pharmaceutical industry. I've been working in this industry for close to 15 years, mainly in the areas of business analytics and customer insights. Patient engagement is also an important topic for pharmaceutical companies as well and they are making large investments to understand and create programs to help patients actively engage in managing their diseases. As a market researcher at Sanofi U.S., I have been gathering insights on patient unmet needs and challenges, specifically in managing diabetes condition.

About two years ago, I was given a special project to go deeper in understanding unmet needs and challenges around engaging with "hard to reach" patients living with diabetes. Based on synthesis of years of market research data, published literature, and experts interviews, I have developed the insights in three phases.
In terms of understanding who the "hard to reach" patients are, we defined them as anyone living with diabetes (mostly Type 2 patients) who are having hard time managing their diabetes due to external factors such as access to health care & technology and internal factors such as motivation. These are the type of patients who are difficult to reach and engage with. To understand ways to better engage with these patients, I uncovered various contributing factors to becoming hard to reach patients and ways to overcome those barriers. I look forward to sharing these insights with you this week.

Thomas Bauer Replied at 2:02 PM, 19 Jan 2015

@ Dr Lee... I was fascianted by your presentation at the IOM last year.. Can you share some of your learnings and solutions?

Thomas Bauer Replied at 2:02 PM, 19 Jan 2015

@ Heesun.... can you share some of your insights into barriers and possible soultions you uncovered in your research?

Heesun Chang Replied at 3:58 PM, 19 Jan 2015

Hello, again~ As I'm a market researcher and not directly involved in engaging with patients, I will share the insights I've gathered through my "hard to reach" project that's described above.

In a nutshell, "hard to reach" patients have multiple barriers and challenges that are inter-related: limited access to health care in rural areas, limited access and/or use of technology (stats about Type 2 diabetes patients: only 28% use internet for diabetes related information, 42% own smartphones, only 15% engage in diabetes-related social media), social attitudes towards diabetes that leads patients to social isolation, financial health, family dynamics, cultural background, food addiction, co-morbid conditions suchs as depression (nearly 1/3 of patients with Type 2 diabetes are depressed and depresion is associated with a 60% increased risk of type 2 diabetes). Effective patient engagement starts with understanding what barriers/challenges the patient is having and finding out sources of motivation through effective communication.

For an effective communication, creating an environment where everyone feels they can ask questions is a way to understand patients' level of understanding and their needs. “Ask Me 3” posters that Tom mentioned above and “ask me, I can help” buttons
are examples of tools for creating such environment. Also, asking patients how they prefer to receive information and communicate about health care (preference for technology usage and need for language assistance) is also critical for an on-going communication and engagement with patients.

There are also communication techniques that are developed for effectively engaging with patients: motivational interviewing and narrative medicine. Motivational interviewing is being used by healthcare providers to understand the underlying reasons for diabetes dis-engagement and to uncover sources of motivation for patients. With narrative medicine, a healthcare provider gets a fuller understanding of an individual’s health care needs by having the individual describe his or her health concern, condition or experience as a story. The information and emotion conveyed by the story is then used a part of the medical evaluation.

Heesun Chang Replied at 4:06 PM, 19 Jan 2015

A note for motivational interviewing - this can be used for any disease/condition, not only for diabetes... If you want to learn more about the motivational interviewing, please let me know. Sanofi can provide more detailed information and training on this technique.

Heesun Chang Replied at 4:14 PM, 19 Jan 2015

While communicating with patients, it is important for a health care provider to talk to individuals about decision-making roles. Some individuals will want to make their own decisions, while some will want to make decisions in collaboration with their families. Avoid making assumptions about what individuals know or want based on generalizations, or stereotypes, about an individual’s background.

A healthcare organization should offer opportunities for individuals to provide feedback about their care and unmet needs. This can be done via perception surveys, interviews, focus groups, comment boxes, telephone numbers or e-mail addresses.

Wendy Lynch Replied at 4:25 PM, 19 Jan 2015

Hello Again,

I agree that it is critical that we ask consumers what their preferences are about role. There are certainly wide ranges in preferences -- from people who want the provider alone to make decisions (quite small) to those who say they want full control (still small but miuch larger than the former). For the most part, there is a desire for a choice based on joint input. We are seeing a growing number of people who use technology, but that is quite generational. Young people are accustomed to searching for information, and do so in this domain as well.

One question we continue to wrestle with is the right sort of communication that fits the preferences and skills of each person. That will need to be tailored as well. Any good examples of people messaging according to role preference?


Heesun Chang Replied at 4:32 PM, 19 Jan 2015

Moreover, an effective patient engagement involves providing relevant and appropriate communication materials. Many Certified Diabetes Educators (CDEs) that I've interviewed told me that the educational materials need to be written in more plain language and have more pictures/diagrams and less texts. Using food models and plates showing the right portions of food groups can be very effective in educating patients about the appropriate diet. Also, research showed that hypoglycemia is often under-reported by patients. Patients may under-report hypoglycemia events intentionally to avoide shame and possible "lecture" from their physicians, but they may not report it because they do not recognize the symptoms for hypoglycemia. A pictorial description of various hypoglycemia symptoms was found to be helpful by some CDEs.

Also, providing culturally relevant content in patient educational materials is very important and is an area with large unmet needs. I will talk more about cultural relevancy in engaging patients with different cultural backgrounds tomorrow. Thank you all for listening~

Heesun Chang Replied at 4:49 PM, 19 Jan 2015

I don't have specific examples of messaging based on preference and skills that I can share... We are developing patient support programs in which we deliver specific messages based on patient communication preference and their engagement levels. This program is designed to help patients to develop healthy lifestyle habits and adhere to their treatment. What type of messages are you trying to develope? Are they about health self-management?

Madhuri Gandikota Replied at 6:20 PM, 19 Jan 2015

I feel there are three types of patients in chronic lifestyle diseases
category. The engagement efforts should/will differ from each type of

A) Younger and technically savvy patients who are in health maintenance
mode. They stick to fit bit and count steps and calories. Predominantly
they do not have any illnesses or lifestyle related conditions. These
patients may embrace new technologies and can be targeted for more focused
interventions, such as customized information “culturally relevant content
in patient educational materials” as suggested by Heesun to make the
relevant information available for tastier and healthier food alternatives
say for South Asians.

B) Middle aged patients who may or may not not be super tech. savvy but
are just falling into the prey of chronic lifestyle diseases are the
patients whom one need to get engaged.

These are the patients where technologies can be used to augment the
interventions. These patients and family members require motivation by
targeted information, follow-ups, and opportunities to engage.

Having a analytics platforms which give snap shot of the patient
population, their demographics, Co-morbid conditions, income and insurance
categories will be tremendously useful . Such platforms that can zoom down
to single patient level are extremely valuable for

· in tailoring health knowledge/information dissemination efforts

· develop personal experience by creating custom goals

· motivational leaderboard opportunities

· perhaps provide a small social network where they can find support


C) Severely sick patients with more than one co-morbidities may require
more interventions from the health system.

Bruce Sherman Replied at 8:47 PM, 19 Jan 2015

Hello everyone,
This discussion has gotten off to a thoughtful start. I'd like to add some thoughts regarding each individual's personal priorities and how those may impact health literacy. Is it a matter of energies being directed toward more immediate needs, such as money, food, and shelter, that prevent individuals from being more engaged in their health? Are we thinking narrowly when we focus solely on communications related to consumer engagement - or should we be addressing a broader range of personal priorities? It strikes me that if we do the latter, perhaps then we'll be able to more effectively draw the attention of individuals to their health.

I have been working with employers in a corporate medical director role for several years; my experience is that in the US we've recently resorted to using financial incentives to engage individuals in their health - and is that simply a matter of addressing a personal priority - money - that commands everyone's attention? Is there a hierarchy of needs that, once addressed, may accomplish two objectives: building trust - and clearing the way for more attention to health?

There have been some recent studies looking at the socioeconomic variables that impact healthcare utilization in the US; and those would support this consideration. However, in developing countries where basic needs are more of a challenge to meet - I have tremendous respect for those who are able to effectively promote health within their communities.

Soori Kani Replied at 10:15 PM, 19 Jan 2015

Thanks to our esteemed panelists and all of you for your great input. Following up on Bruce Sherman's point on "socioeconomic variables that impact healthcare utilization", I wonder if anyone has worked on health literacy models designed to engage the undeserved youth and their care takers?

I am trying to identify the elements of a national-level program to improve care coordination for children and youth in foster care. Effective care coordination requires engaging the many stakeholders who are involved in care and well being of a child, and the children themselves, who must learn to self-advocate and take ownership of their own health, much sooner than children in normal family settings. Given that achieving greater health literacy is integral to improving the health of disadvantaged populations, it seems appropriate that this pilot should leverage available health literacy tools and solutions.

I look forward to your thoughts on how some of the methods, approaches, tools or solutions mentioned in this forum may be leveraged. Also please let me know if you are interested in collaborating on this topic beyond the scope of this Expert Panel.

Thank you.

Chris Duke Replied at 11:55 PM, 19 Jan 2015

Hi all!

Thanks for all the thoughtful comments so far! I'm interested to know if anyone here has experience in getting patients together in a kind of peer-led patient engagement support group, where patients discuss the issues with each other. Peers can have a very powerful social influence, often more than the outside "experts" (that's us!) I think this could be a very powerful intervention, especially for those who are most skeptical of healthcare and health professionals.


Madhuri Gandikota Replied at 5:02 AM, 20 Jan 2015

Hi Again,

For Chris’s comment of peer-led patient engagement support group, I have
had one experience where one of my employer had wellness gala’s

They advertise it make it fun event atleast for half day to one day. Start
with fasting blood work, healthy breakfast, group dance events lead by
DJs of multiple cultural background (Latin dance, Bolly wood dance,
Zumba) etc.
After the music program they have interactive sessions where people discuss
their healthy habits since the last blood work. And the organizers learn
the patients goals (Bruce Sherman’s suggestion) and if needed follow then
up with a monthly phone call to patients who agree to be followed. Conducting
this type of event twice a year, not only have patients engaged in the fun
event, and will constitute like a longitudinal study with a great
opportunity to follow-up. Infact, people love this festive event. And
patients are engaged proactively. There are a bunch of people who get
friendly and start having walks together. On, this day they offer
discounts in local gyms, healthy food stores, have recipes for healthy
alterntives, and lot of creative and fun stuff. At the end of the day,
people had their blood work done, good food, dance, friendships, and some
trinkets to take home !

Madhuri Gandikota Replied at 5:03 AM, 20 Jan 2015

Hi Again,

Soori's project sounds very challenging. Please let me know more details


Charles Lee Replied at 9:33 AM, 20 Jan 2015

Thanks Tom.

For those who may be unfamiliar, the Institute of Medicine periodically convenes a Roundtable on Health Literacy that is broadcast on the web for free. The specific IOM meeting you reference from last year was on health literacy and the discharge process to improve patient engagement. The links to IOM and archived videos are below.

One of the key points that I got from the meeting was that any solution -- for it to really work -- has be systematically ingrained into the culture of the organization and embedded into the workflow as part of routine care. This means that resources, such as discharge and medication instructions, need to be presented in a simpler, more engaging way, with personalized action plan. We, at Polyglot Systems, Inc, have been working on IT technologies that allow creation of personalized, multilingual patient instructions in both written and verbal forms. We now support 22 languages and the ability to print dual language instruction sheets. Some of our focus has been on reducing medication errors, improving medication adherence, and more effective transitions of care instructions. One of the major benefits of IT solutions is that, if planned properly, it can scale economically and quickly to a much wider number of sites, such as FQHCs or safety net hospitals where the majority of patients may have low health literacy levels or language barriers, and where funding is often a challenge. Many of our technologies were funded through the National Institutes of Health through their Small Business Innovative Research grant program, which I HIGHLY recommend for those who may be interested. Our website is

Attached resources:

Heesun Chang Replied at 11:23 AM, 20 Jan 2015

Thanks all for your very thoughtful comments. In terms of personal prioritization mentioned by Bruce, yes, it is about understaning how patients prioritize different matters in his/her life and what challenges the patient faces that hinders him/her from managing their health. The purpose of an effective communication is two fold: 1) to elicit and learn about those priorities and challenges and 2) to come to appropriate solutions.

In terms of peer-led patient engagement support groups, Madhuri's example is an excellent example of what patients want in support groups. In our unmet needs research, we asked patients about some desired support program ideas. They told us that what they want is not medically focused "support groups" which remind them about their conditions. Instead, what they want is a fun and engaging group that can do fun activities together, such as going to movies, exploring healthy food restaurants, hiking or traveling, etc. Having fun is the main driver for joining these types of peer groups and while they enjoy their activities together, they can also share their experiences in managing their conditions and share tips/information. Patients also told us that mentoring is a good motivator and Sanofi has been sponsoring such mentorship program in which veteran diabetes champions who were able to manage their diabetes successfully share their success stories with relatively newly diagnosed patients or somone who's starting on insulin.

Chris Duke Replied at 12:23 PM, 20 Jan 2015

Madhuri - that intervention sounds fantastic. Do you know if/how data is being collected? I expect it will be more successful than most interventions -- having fun with peers towards a shared goal is hard to beat!

Soori Kani Replied at 12:42 PM, 20 Jan 2015

Thank you for your interest Madhuri. I will look you up offline.


Thomas Bauer Replied at 12:57 PM, 20 Jan 2015

Today's question - How do you address the obstacle of time in patient education? In what ways is technology leveraging the transfer of knowledge?

Thomas Bauer Replied at 1:22 PM, 20 Jan 2015

During the past 10 months I have lost 165 pounds... One of the many elements that helped me through this process has been a virtual support group. During my journey I learned my mother would pass... As I dealt with this news I wrote ona private web based support group for weight loss... “in all of my anguish and grief all I want to do is eat.... so far I have staved off these cravings but I do not know how much longer I can hold the cravings off.... A peer responded “Your Mom must be so proud of your weight loss, honor her by continuing your weight loss... At that moment the cravings subsided and I honored my Mom by continuing my journey.

My question is how do support groups aide in transferring knowledge and activation of patients?

How have you linked them to your practice/health care system?

How do you navigate assuring the information shared is accurate and does not negatively affect the safety of our patients?

Susan Auger Replied at 2:07 PM, 20 Jan 2015

Thank you for sharing your experiences. I am appreciating the complexity and multifaceted dimensions of this topic. In relation to the question about how to address the obstacle of time, I'd like to share a bit about our research and pick up on some of the previous discussion about peer groups. In a traditional one-on-one prenatal care model, the average visit is about 10-15 minutes. This allows for the necessary physical exams and a short exchange but leaves little time to deal with often complex social-emotional issues, language barriers and cultural differences. Add on limited health literacy skills in English and one's native language, even the most skilled clinician practicing patient-centered care is hobbled by the system's design.

Our research focused how to work with peers (community health workers) in the community as an extension of the prenatal care team. Their role was to serve as a bridge with providers, building relationships, providing basic prenatal education, and helping access community resources that address broader social determinants of health. The program was designed to help health professionals work at the top of their license. As one lactation consultant described, it was like the earth had been plowed and she could come in and work on planting seeds and tending the garden. The initial education had been done and the women were ready with specific questions and concerns about their particular needs. This consultant could then focus on using her expertise, tending to the details and nuances.

According to our findings, participants felt the program helped deepened and expand their learning and sense of social support. Some of the most significant reported changes in confidence and behaviors included the participants' willingness and ability to ask questions of their providers, and ask for help from family and friends.

The program is based on a blending of participatory (or popular) education) and stories (photonovels). It's fun, highly interactive and based on shared power (similar to patient-or person-centered care). We call it the Teach-With-Stories Method. What's unique about this approach is that since it is based on empowerment principles, the training and process by design is intended to also address underlying power issues that are related to health equity. Being able to work for transformational change and social justice while teaching health has been highly motivating for all of us involved. It's much more than transferring knowledge, it's like Gandhi said, it is being the change you wish to see in the world. I think that working with community health workers/lay health educators/peers are a vital resource for advancing population health objectives and for making the best use of everyone's time and strengths.

Bruce Sherman Replied at 2:45 PM, 20 Jan 2015

It's so reinforcing to see the thoughtful comments and experiences posted here. The comments from Susan Auger resonate particularly well for me; the issue of time constraints, as Tom Bauer has raised, can perhaps be addressed by someone involved in the healthcare system that isn't so pressed to generate revenue on a fee-for-service basis. To me, one of the remarkable studies in this regard was published in 2012 (link to PDF below), that showed that time spent with a peer having training in the basics of motivational interviewing was perhaps more effective than a financial incentive (or usual care) in helping individuals reach their desired clinical goals. The cost-effectiveness of this approach is significant, particularly given the limitations of the current delivery system. Others have called for formalizing a community health worker as a new occupation - to create gainful employment for a large number of individuals, along with more accessible healthcare resources, particularly in settings where access to a healthcare practitioner is challenging. The APHA has been advocating this for some time; without a formal payment structure, it's difficult to operationalize this in the healthcare setting. Here's the link to their policy statement:

In short, improving access and convenience - perhaps via retail medicine settings such as pharmacy-based or other clinics, with guidance provided by community health workers, seems to make good sense.

Attached resource:

Madhuri Gandikota Replied at 4:25 PM, 20 Jan 2015

Hi All,

Very interesting discussion and valuable input by Bruce and Susan.

As I am doing some work in the area of translating massive health data to
meaningful knowledge, I can take this example to highlight some areas.

Many reporting tools such as dashboards, reporting, , summary and
statistical query, semantic interpretations for textual data, and
visualization tools for high-density data are some methods to transfer
knowledge into simple visuals.

All these tools have tremendous potential to gain insights into to the
health care system. I feel, the era is still in the beginning years .

I feel treating data as an asset with lots of value, cost, and risk lens
and one can garner tremendous knowledge based on the information you are
seeking. The data sources can be structured as in claims data, unstructured
which includes medical records, Text, Image, Audio, Video.

Big-data architechtural platforms like Oracle and HANA are great sources
for this.

For the obstacle of time, the solution such as SAP-HANA has real time
capabilities of transmitting data. So in principle, there are technologies
that can transmit the information (from Data ) to the patient in real
time. Even batch processing can be done at near real time, by Oracle and
SAP I can think of. These technologies are being used in Retail industry to
capturing real time foot traffic with the intent of delivering in-store
promotion. So in principle we should be able to translate this technology
to healthcare. But the real question is though we all know that
there’s tremendous
value hiding within the massive high-density data set.

But how do we evaluate one set of big data against the other? How do we
prioritize? What standards to use? How do one differentiate correlation vs
causation? are some questions we need to consider.

Thomas: 160 pounds in 10 months is a HUGE feat. I need help too.

Please let me know the group.My problem is maintainence.

Thanks all.

Stefan Armstrong Replied at 5:52 PM, 20 Jan 2015

Thank you Tom, for your invitation to participate in this stimulating discussion.

By way of introducing myself to the group, I am a writer and healthcare content strategist, as well as a longtime practitioner and teacher of Hatha yoga. A childhood car accident left me with a limp that persisted into my teenage years and set me on a lifelong quest to experience and understand personal and cultural transformation processes.

Bruce Sherman's suggestion of a hierarchy of needs is exactly the direction my thoughts turn in relation to the question of communicating more effectively about health issues.

Several years back, I led a population health content personalization initiative for a major hospital marketing service organization, and the patient segmentation model was quite similar to the ACE Measure framework. Its fundamental insight was that highly literate patients are not always engaged with their care, and highly compliant (engaged) patients are not always that knowledgeable. Great doctors and great social workers instinctively adjust their communication style to address the patient's most relevant needs; a great health education program must have a way of effectively adapting to the hierarchy of needs of individual patients.

What is exciting to me about these times is a growing consensus that information transfer is simply an outdated model. Or, to put it another way, we're awakening to the idea that information only solves certain problems for certain patients in certain situations. What can be much more effective are initiatives to remove obstacles (access), promote ownership (relatability), or increase commitment (motivate).

I believe that an important problem to solve is how digital media can extend in-person relationships in a way that preserves privacy, is not intrusive for clinicians or patients, and can address a fuller spectrum of patient needs beyond information transfer. Unlike marketing communications, which come from a "brand", messages that extend conversations begun in a clinical setting come from a trusted and relevant source. So for example, imagine if we didn't have to predict whether a patient primarily needs information, navigation, ownership, or commitment — or for that matter, whether humor or a respectful tone would be more effective. The assessment could be made by the clinician, who by doing so effectively adds human empathy to an automated message stream.

Madhuri Gandikota Replied at 6:32 PM, 20 Jan 2015

Thanks Heesun for your positive feedback.
Chris: I am researcher with training in Epidemiology from UCSF.

I am passionate about translating health-data to meaningful
knowledge/insights. Hence, I founded my company to do that . In
particular I get excited to present the complex clinical data in new and
invigorating fashion –a great place for possible patient involvement.

The scenario I described is based on the programs conducted by one of the
employer here. They have blood drives and also beer bashes. So I combined
both to have as one interactive event for patients.

Basically, our platform can talk to any data set and analyze any data
(Structured and unstructured data) in a health care setting and come up
with a friendly interface that can help assess

a. Patients with high BMI, elevated triglycerides, glucose intolerant,
high BP and combination of all these.

b. All these patients can be stratified in terms of age, and other
demographic characters such as income, insurance status, and ethnicity
etc.- all helps to understand the patient population to tailor for their
needs. Having such product aids in resource allocation, disease management
programs and to engage patients.

Wendy Lynch Replied at 6:45 PM, 20 Jan 2015

Thanks for such rich contributions.
As I see the emphasis on peer-led support, I am reminded of some of our results about trust. A large majority of consumers report trusting their providers -- almost to (and sometime past) the point of not questioning when they have doubts. Only 6% believed that a doctor would EVER do a test or treatment that wasn't necessary. (so much for Choosing wisely!) They also believe that more people die of car accidents than hospital errors, even though the ratio is many times the opposite.

Further, a significant portion of consumers say they went along with suggestions they didn't agree with. Almost half say they NEVER remember a doctor offering them options from which they could choose. It seems along with provider and peer support, there needs to be consistent reinforcement that we each have crucial knowledge about ourselves and an important role to play.

How we include encouragement --- and healthy skepticism or at least discussion --- in our literacy efforts will be critical.
Thanks all.

Heesun Chang Replied at 7:01 PM, 20 Jan 2015

Adding onto the community health workers mentioned by Susan, there is a group of community health workers called, "promotores" who are trained to provide basic health education and support in Hispanics communities. Use of this type of help to reach some unreached and dis-engaged patients among Hispanic population is very helpful as they break some common barriers to effective engagement such as language and cultural differences. Using community peer groups such as promotoras can be an effective way to reach patients where they are.

In terms of using technolgoy to reach out the patients, there's a case study done in NY where a pediatrician used text messaging to reach out and educate teenagers in her area, mostly Latinos and African Americans. The idea of using text messaging to educate came to her as she noticed that her teenager patients were always texting in the waiting room and even during the visit. The program called "Text in the City" was very successful in engaging the teenage patients and educating them about birth control, vaccinations, weight management, and etc. Her patients used the tool to ask her questions and this helped the physician learn about gaps in health education. These patients live in low-income areas and do not have access to internet, but almost all of her patients owned and used cell phones. This is a great example of knowing your patients and using the technology to effectively reaching and engaging with them. Here is more information about using texting to reach out and educate patients:

The use of technology is different for different cultural groups:
African Americans are significantly higher users of Twitter than the general population (26% versus 18%), and significantly more African Americans own smartphones (53% versus 45% of the general population), while 93% of US Hispanics use mobile phones regularly.

Susan Auger Replied at 10:22 PM, 20 Jan 2015

Thank you Heesun for adding the information about promotores and their effectiveness within the Hispanic community. In an attempt to keep my post on the shorter side, I neglected to mention that we were working with Latinas with low socio-economic backgrounds. We worked closely with many partners throughout the study and program development process, including a promotora advisory group. They were instrumental in helping keep the materials and language culturally appropriate and meaningful to community members.

I want to underscore Dr. Lee's earlier comments about the value of the Small Business Innovation Research (SBIR) grants. Our community-based participatory research project was also funded through NIH SBIR grants. Our grant just ended on Dec. 31, 2014. For those who may be interested, we will be posting information on our study process in the next few months at

Doris McNeill Replied at 9:35 AM, 21 Jan 2015

Good morning everyone!

I have enjoyed reading everyone's perspective on the subject of health literacy. I work directly with HIV/AIDS clients. As their Medical Case Manager, it is my job to advocate for them and ensure they receive the best care possible and assist them with resolving some of the barriers that can affect their adherence to their prescribed medical treatment plan. Health literacy is something we work on constantly.

Many clients do not know they can "question" the physician about whatever it is that is of concern to them. Many clients only have limited literacy skills, and some have none. Any treatment plan will not succeed if the subject does not understand what is required of them. Simple instructions and explanations work best with most clients. Pictures to explain how things work are also great tools.

I am also bilingual in Spanish which is a huge thing for our local Hispanic population. I was raised in part in a Hispanic community, so I know first hand some of the issues that are unique to our Hispanic clients. I started a support group for our Hispanic clients a year ago, and the response is fantastic. The meetings are designed to inform and respond to their questions on any topic. Sometimes, the topic of HIV/AIDS is only discussed for a few minutes when there are other issues that are presented that the group needs to vent about or just know more about. Hispanics love socializing and this group allows them to do that and not feel so "alone".

To ensure our clients adhere to their medical treatment plan, we have learned that with the correct support that is an achievable goal. The main goal is to lower the community viral load and lessen new transmissions of the disease. Clients are constantly educated at whatever level they need. As opposed to physicians, case managers can afford to spend as much time as needed with a client to reach this goal. Of note is that many clients request our presence at their medical appointments. Even if we say nothing, clients report the treatment they receive from the health care professional is significantly different than if they go it alone.

From personal experience (boots on the ground, so to speak), I can report that working on health literacy is not "rocket science"... It is more of a "common sense" issue (and I truly do not intend to offend anyone here). The provider or advocate needs to figure out what skills the patient has in terms of health literacy, and how to address this issue without offending him or her. I do understand the time constraints of medical providers, and wish that all patients could have someone they can go to for further questions and or explanations on whatever their concerns are. It would be great if that service were available to all patients everywhere!

Thomas Bauer Replied at 11:04 AM, 21 Jan 2015

Moving from Health Literacy to engaged and activated has been a struggle in health care.... Given that statement, what can we learn in activating our patients from successful programs such as Alcoholics Anonymous?

Stefan Armstrong Replied at 12:28 PM, 21 Jan 2015

What a fascinating question, Tom.

I hope I will offend no one by mentioning the obvious, that Alcoholics Anonymous, while has a proven history of instilling lasting change where many other attempts have failed, does so in large measure because it is more than information — it is a belief system. As such, it has not done much good for those who can't go along with its rather stringent requirements for belief change and its high time and social commitments.

Thomas Bauer Replied at 12:37 PM, 21 Jan 2015

Stefan I agree with the importance of the belief system in their success. In addition, I believe there are other social support mechanisms (sponsors) and creation of a shame free environment that may be valuable lessons learned.

Heesun Chang Replied at 12:47 PM, 21 Jan 2015

Successfully engaging and activating patients for better outcomes requires multi-demensional efforts. Use of technology (simple and accessible such as texting) for real-time support and engagement (medication and medical appointment alerts were found to be helpful), peer-led groups for emotional support (and we can't forget the education and support for the caregivers of patients), community engagement for providing on-going support and resources, financial assistance, and specific programs to address motivation.

In terms of programs to address motivation and behavior change, there is a huge amount of research done in this area. There are various programs developed based on short-term and long term behavior modification theories. Some popular short-term behavior modification program, such as "tiny habits" are gaining some traction these days as it leads patients to make the desired behavior change through building tiny, contructive habits. Long term behavior change requires change in a person's perception and instilling of motivation. There are some people who have motivation and will but have trouble following through and need some "hand-holding" Programs like "tiny habits" and a like can help these patients how to make that move by helping them build healthy habits. There are real-world applications of these short term & long term behavior modifcation models in various industries. I can talk more about these if anyone's interested...

Susan Auger Replied at 2:07 PM, 21 Jan 2015

Reflecting on our objectives in the field of health literacy and AA type programs through an empowerment lens, several commonalities come to mind. Both approaches aim to cultivate confidence (power-from-within or self-efficacy), connection (power-with-others), and competency (power-as-mastery)...albeit in different ways.

Both approaches share common values related to respect and cultivating a safe, shame-free environment and building trust, as Thomas Bauer mentioned. I would also add: mutuality in relationships, reflection, and putting one's values and goals/dreams into practice which is seen as a lifelong 'learning' journey- one that can benefit of one's self, family and community across the lifespan.

Madhuri Gandikota Replied at 5:18 PM, 21 Jan 2015

Hi Heesun Chang,
Great inputs.
Is there a email address I can reach you?

Bruce Sherman Replied at 9:44 PM, 21 Jan 2015

Such a wonderfully rich discussion. I'm struck by the thoughtfulness and complexity of variables under consideration - and appreciate that the real value lies in simplification at the patient level. A seeming challenge - for which many in this discussion have reported successful interventions.

In response to Marie's question of the day, from a metrics standpoint, we're using a reasonably structured approach to metrics for health literacy program impact. At a patient-level perspective, leading indicators include initial and ongoing use of available smart phone-based consumerism resources/decision support tools (tracked by page hits) and satisfaction with those available resources. Intermediate indicators include utilization of healthcare services (e.g., preventive care compliance, immunizations), gaps in care, including maintenance medication adherence, with lagging indicators including healthcare costs, and ambulatory care-sensitive ED use and hospitalizations. We're at the beginning of our journey, and trust that early indicators will be directional for lagging indicator outcomes. Also included are informal measures of self-reported workplace productivity and absence - my sense is that quality of life may be a more broadly generalizable outcome. We're also incorporating the Altarum Consumer Engagement (ACE) survey, and look forward to tracking changes in the measured values over time.
Hope this provides a sense of one measurement approach in a commercially insured population; I anticipate that there are likely some reasonable parallel/comparable measures in other health management settings.

Thomas Bauer Replied at 8:47 AM, 22 Jan 2015

We have the beginnings of some insight into moving from health literacy to activation in our research using visual representations of the impact of life style. During Q4 of 2014 we began testing the use of Greater than Ones Bio-Digital Human in our limb preservation unit. This technology provides 3D images of the human body. Through this technology we are able to provide visual reinforcement to our teaching. For example we can provide images of normal vascularization of the leg, reduced blood supply as the result of pathology and then the further constriction as a result of smoking... This demonstrates to the learner a direct causal relationship between their behavior and their health condition.

Early comments from educators indicate a now richer conversation of the impact of smoking and more requests for assistance for quitting. The results are early, but our indicative of moving from informed to activated... I have long believed that in some lifestyle changes the learner no longer hears the message.... I will admit to having been told so many times I needed to lose weight that I no longer heard it... Several studies outside of health care reveal that providing patient education in the learners preferred learning style results in a higher level of transference of knowledge...perhaps this is one of many drivers in moving from informed to activated.

Heesun Chang Replied at 10:14 AM, 22 Jan 2015

Sure, I can be reached at <mailto:>

Michael Dermer Replied at 10:59 AM, 22 Jan 2015

If you ever have any interest in adding some content about the use of rewards and incentives in patient engagement, please let me know.

Heesun Chang Replied at 12:52 PM, 22 Jan 2015

The example that Tom gave is related to levers of long term behavior change by providing the source for intention and motivation for change/act.

Some levers of short term behavior change are: heuristics (human factor), nudges, incentives, habits, and design
Ariely. Predictably Irrational: The Hidden Forces That Shape Our Decisions. Harper.
Hanks, Wansink et al. (2012). Journal of Public Health. doi: 10.1093/pubmed/fds003
Eyal. (2008). American Medical Association. Virtual Mentor. 10(11):756-762
Kahneman. (2011). Thinking Fast and Slow. Farrar, Straus & Giroux.
Wendel. (2003). Designing for Behavior Change. O’Reilly Media

Levers for long term behavior change are: self-efficacy (building confidence), beliefs (attitudes), intention (desire), motivation (will), and influence (environmental factors).
Bandura. (1986). Social Foundations of Thought and Action. Prentice-Hall.
Glanz, Rimer & Lewis. Health Behavior and Health Education.
Ajzen. (1991). Organizational Behavior and Human Decision Processes. 50:179–211.
Prochaska & Velicer. (1997). Am J Health Promot. 12(1):38-48
Cialdini. (2006). Influence: The Psychology of Persuasion. Harper Collins.

There are various theories and models for behavior change and it is not "one size fits all". The best approach to sustainable behavior change is to:
- understand and accept patients’ beliefs and expectations
- build confidence over the course of an intervention
- rather than focusing on symptom alleviation, determine the meaning of the disease, the impact of the illness on the patient and his or her family, and their current coping strategies
- offer education, short-term change strategies, and long-term interventions in concert to target patients across the psychological spectrum and at multiple stages of the patient journey

Thomas Bauer Replied at 1:49 PM, 22 Jan 2015

Michael, please add you comments... I think this is an important consideration

Michael Dermer Replied at 2:41 PM, 22 Jan 2015

One of the key elements is the used of financial rewards tied to behaviors. Many of the other techniques outlined here are critical, but right or wrong many programs do not move the needle without financial incentives. The keys are
- aligning the right dollar value of reward to the right behavior. We have to consider the Level of Effort when assigning dollar values. Too often we see a dollar given for a Biometric Screening (a pretty basic behavior) and the same dollar value for reducing your BMI (a much more complex behavior)
- aligning financial incentives not only to long-term risk reduction activities (i.e., nutrition) but also to behaviors that have an immediate and an intermediate ROI. Immediate behaviors such as lower cost MRI and intermediate behaviors such as medication adherence, preventative screenings,

Hard to move the needle without financial incentive. That being said, this is optimized when financial incentives is combined with many of the behavior modification techniques outlined here. But whether it is BJ Fogg or Force Field, money talks to many consumers when it comes to their healthcare.

Attached resources:

Heesun Chang Replied at 3:32 PM, 22 Jan 2015

rewards & incentives can be also provided as points for a free cooking class, membership to exercise class, or educational materials/cook books. Also, rewards can be attained in the form points within apps (as part of gamification of health apps). Competition is also used in some health apps that allows patients to see how he/she is going compare to others who are using the same app.

Thomas Bauer Replied at 3:37 PM, 22 Jan 2015

I believe financial incentives can be powerful...what are thoughts on a sense of competition or award recognition such as you may find in award of belts in the martial arts....I would imagine some would like to be the ninja of their condition... I would imagine there would be a sense of moving from victim in some to empowered or in control

Chris Duke Replied at 3:58 PM, 22 Jan 2015

The research on rewards is really interesting and complex. Purely extrinsic rewards, like cash payments, tend to work really well as long as they are in place, but also tend to stop working once they are taken away -- it is similar to an economic transaction. People do it for the money, but once the money is gone, so is the motivation -- unless you can reach the point of habituation, where the new behaviors are automatic. Intrinsic rewards, like satisfaction and pride, tend to be much longer lasting because they are internalized. This is more like the martial arts belts Thomas mentions -- a tangible symbol of personal dedication and pride that both defines and motivates the self. I think there would be a lot of benefit in health engagement for these kinds of symbols of accomplishment deployed in interventions and communities. To be most effective, I think the symbols would need to be socially recognized rather than just private.

Madhuri Gandikota Replied at 4:21 PM, 22 Jan 2015

Dear All,

Thanks so much for such excellent resources and references, and discussion
on the topic. In particular the thoughts of

I was also wondering, how does reward structure effect if one need to apply
for an NIH grant/SBIR grant or any government grant to develop a patient
engagement portals.

Does such reward (financial) structure should go some thing like IRB

The dollar values should be enticing but not luring .

Appreciate your input.


Stefan Armstrong Replied at 5:25 PM, 22 Jan 2015

@Heesun Chang I wonder if in your research you have found that there are certain times when people are more receptive to becoming engaged and making behavior changes? That is the premise of the program Tom mentions with the limb preservation unit. We learned that patients are remorseful and willing to make commitments to improve their self care in the immediate aftermath of a hospitalization for amputation or treatment to avoid amputation. Another key premise of the program is to subtly remind patients of the motivations and emotions they were experiencing in this moment of commitment.

Thomas Bauer Replied at 5:52 PM, 22 Jan 2015

What changes have you implemented in your practice to support patient involvement?

How do you ensure these changes are sustainable?

Chris Duke Replied at 6:18 PM, 22 Jan 2015

"What are the best methods for measuring patient engagement? What kinds of metrics or indicators do you find most informative?"

People have used a lot of different ways to measure engagement. While we were developing ACE, we felt that engagement was a complex, multi-facted thing -- that people can be engaged in some ways but not others. Some people are very pro-active about doing health research online and asking their doctor good questions, but don't hit the gym or always eat what's best. For others, it's the reverse. We found that not only did answers to ACE questions cluster together on distinct domains, but each domain predicted very specific clusters of behaviors and outcomes. People could be very engaged with learning about their health, but less engaged with understanding their healthcare. Using this multi-domain approach, we could much better understand how different styles of engagement influenced different constellations of health outcomes.

Heesun Chang Replied at 6:41 PM, 22 Jan 2015

Stefan, yes, in most cases, patients make the necessary behavior change after some major traumatic experiences, such as having diagnosis of major disease(s), having to start on insulin, experiencing major CV events, experiencing deaths in his/her family due to certain disease, etc. The catch here is that the actual experience of events is a powerful motivation, not just an anticipation of such events. Fear tactics are often used by some health care providers to motivate patients but these are not as powerful. On the other hand, positive experience/anticipation of it is found to a strong source of motivation for patients. For example, having grandchildren and wanting to be there for them and spend time with them is a powerful motivation for patients to stay healthy.
Once the source of motivation is identified, however, another step such as self-efficacy is often needed - meaning, instilling confidence that he/she can manage the condition and that taking small steps matter (this is often done through effective education and support). Also, having small wins along the way such as weight loss and having more stable daily blood sugar levels, can be a powerful incentive for the patients to make sustainable behavior change.

Susan Auger Replied at 1:11 AM, 23 Jan 2015

In response to your earlier post... about your question relating to including incentives or reward structures in federal grant applications. My best advice is that you check with the Department or Agency that you might consider submitting an application to and ask about their specific budget guidelines (because policies can vary across federal departments). If you are affiliated with a university that has a department that handles federal grants, they would be a great resource since they have people dedicated to helping faculty create budgets that are compliant and they keep track of the changing federal policies and procedures.

If you are submitting a SBIR/STTR grant and you are the small business (and do not have this expertise in-house), I highly recommend that you seek out an accountant with SBIR expertise since federal accounting practices are different than general accounting practices and they also stay abreast of the changing policies and procedures. Stepping into the federal grant arena was an eye-opening experience...hope this is helpful and addressed your question at least in part.

Madhuri Gandikota Replied at 6:19 AM, 23 Jan 2015

Thanks so much Susan for your reply. I am working on those aspects.
But not yet established the collaboration.

I see that you have NIH SBIR funding. Can I reach you offline for your
I have appointment set up with NIH staff. However, I want to talk to a

Thanks Again,

Michael Dermer Replied at 8:09 AM, 23 Jan 2015

Heesun and Tom - the way I would look at some of your suggestions is the following. The two key assets we need to optimize behavior are Engagement Tools and incentives. Engagement Tools is a broad category and includes all of the items that you note above - competition, status, team challenges, social recognition and many more. And to your point, the goal of the extrinsic incentive is to drive short term actions (get a mammogram) and create what I call an epiphany - an exposure that creates an aha moment for the individual due to exposure to a result, diagnosis, support, relationship that ultimately unlocks some of those more intrinsic motivation. Like an incentive program for women in the UK, the Women said that it was the incentive that got them there but ultimately the support group and the relationships that kept them there.

The mechanism - whether through a health plan, employer, app, etc. - will continue to evolve and change just like it did in other industries. In other industries, you got frequent flier miles only for flying and now 60 percent of FF miles are earned by non-flying behavior.

Lawrence Wasserman PhD Replied at 9:25 AM, 23 Jan 2015

SBIR at USA government agencies requires that the submitter be us company. If I am wrong please accept my apology.

There are key points in that competitive nature of getting award is large, award may be longer coming then one expects and other points ...

Good luck


Madhuri Gandikota Replied at 10:35 AM, 23 Jan 2015

Thanks Lawrence for the suggestions. I understand that the awards are
longer coming.
We have innovative ideas, established partnership with a a gaint IT.
As a Startup we try every thing- long term, short term

Thanks again

Thomas Bauer Replied at 4:31 PM, 23 Jan 2015

I would like to thank everyone who participated in a lively discussion this week. I personally found our discussion to be invigorating. I hope everyone enjoyed and benefited from this exchange of information about an area of opportunity and passion for all of us who participated.

Jessica Ludvigsen Replied at 4:36 PM, 23 Jan 2015

AHRQ Webinar to address Health Literacy and Patient Engagement:

As our Expert Panel on Health Literacy to Patient Engagement comes to an end today, we encourage you to continue this important conversation by joining AHRQ’s free webinar on engaging patients next week: Thursday, January 29 from 3-4:30 pm ET.

To learn more about the webinar please reference the link below. I also included a link where you may directly register for the webinar.

If you are unable to attend, you may be interested in viewing AHRQ’s Health Literacy Universal Precautions Toolkit. Though a little lengthy, this document contains tools to help improve spoken communication, written communication, supportive systems, and more. Do you think this material is helpful in engaging patients? Share your thoughts!

Attached resources:

Susan Auger Replied at 4:48 PM, 23 Jan 2015

I would be glad to of help and talk with you off-line.

thanks also to everyone - I really appreciated the diverse perspectives and areas of expertise in this discussion.

Best wishes-

Jessica Ludvigsen Replied at 9:31 AM, 26 Jan 2015

Many, many thanks to our exceptional panelists, and all of our community members who participated in this incredibly rich discussion. We greatly appreciate the insights everyone has shared, and look forward to continuing to discuss these important topics in 2015.

We will be working on a Discussion Brief to summarize the key points from this Expert Panel, and will share details as soon as that is available on the website.

In the meantime, we would be grateful for your feedback in our short, 9 question follow up survey. These surveys help us understand the impact of our Expert Panel discussions, and your feedback is incredibly valuable to us. Please take the survey now, by visiting:

A/Prof. Terry HANNAN Replied at 4:36 PM, 10 Feb 2015

I would like to add to this discussion topic a component of "ancient history" relating to Patient Engagement. Professor Warner Slack of Harvard Medical School and Centre for Clinical Computing performed some of the first computer-based interviews in the clinical world.
From another discussion group today he sent me a seminal article he published on this topic.
1. Slack WV. Patient counseling by computer. In: Zoog S, Yarnall S, eds. The changing health care team. Seattle: Medical Communications and Services Association, 1976, 108 11
2. Evaluation of computer-based medical histories taken by patients at home Warner V Slack, Hollis B Kowaloff, Roger B Davis, Tom Delbanco, Steven E Locke, Charles Safran, Howard L Bleich J Am Med Inform Assoc 2012;19:545e548. doi:10.1136/amiajnl-2011-000580

Jessica Ludvigsen Replied at 9:43 AM, 13 Apr 2015

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