What Can A Health Literacy Association Do For You?

Hi Everyone,

I have a big question, and would like to hear from a lot of people about this.

Many fields have professional organizations, which support the field in various ways. They may have conferences, publications, or professional development opportunities, among other supports.

Health literacy does not have such an association, but there has been some talk in recent years about creating one. This idea is now gaining momentum. There was an informal discussion last year at IHA’s Health Literacy Conference. And this year, in the next two months, there will be pre-conference sessions about a Health Literacy Association at both the Health literacy Wisconsin Summit and IHA’s Conference.

But, we would like to hear input from everyone, not just those at the conferences. This LINCS community includes a bigger slice of the health literacy advocates out there, over 1,400 in fact! So we are asking for your thoughts about an HL Association. Please respond and tell us what you think!

Some questions to discuss:

  • What would be the mission of such an association?
  • What services/resources should it provide?
  • How would membership be structured?
  • What would be the cost and the benefits of joining?

Thanks for sharing your input!



Julie - A great idea and likely very beneficial for those who are involved in the field full time.  As someone for whom HL comprises a small portion of my total workload (tangential really), I couldn't justify participation - time wise or financially.  Having the type of support system offered by this community is perfect for my needs.  -shb

I think this is an excellent idea! Those interested in health literacy work in a variety of fields, and having an additional way to come together and learn from each other would be very helpful. I would see the main purpose of such an organization being to put on a conference each year, and maybe also to provide sessions for other conferences. I would be willing to work on this.  -- Pat

 I am a research nurse and have had past roles in developing patient education  materials and promoting health literacy.  Although I don’t have an “official” role in health literacy, I am frequently approached as a health literacy resource at my hospital. While I can’t justify the time or expense to attend conferences, I would very much like to stay abreast in the field, and this would be my number one reason for joining an association.  I would think that the association would be a centralized, authoritative resource for health literacy, perhaps with tiered memberships that would serve various needs, from those who have the tangential role to those who work heavily in the field. I would also like to see the association offer some sort of professional certification in health literacy.

I believe a professional organization is a great idea - even for those of us who are not full-time HL-ers.  I'm less interested in conferences than I am in a professional development ladder.  I think some kind of certification would give those of us who are not full-time HL professionals, but who are active in health literacy efforts within our own organizations, a little more credibility here at home.  It's one thing to say, "well, I've read everything I can find on the subject, and I've been to a couple of conferences...," but that doesn't prove competence.  

That being said, I would want the organization to fully accept those of us who are not full-time HL professionals. 



Thanks Julie for hosting this discussion, and thanks too to everyone who has responded so far. 

One of the basic questions that needs to be asked is about price point for membership, and what the threshold for personal financial pain might be around this. A few questions:

  1. Would your employer cover your membership? 
  2. Would they join as an organization, if association membership was structured to include such a membership tier? 
  3. What would you consider to be a fair price to pay as an individual? (Think about other professional groups/associations to which you belong, or have belonged in the past, and value you received from them for membership.)


I have two questions, and several suggestions of what the goals of this organization might include:



  1. Should this be a U.S. national, North American or world organization? My preference would be North American
  2. Should it include:
    1. Adult literacy practitioners and providers who are interested in promoting adult learner and family health,
    2. Practitioners and providers of training of health care providers,
    3. Health care professionals and providers interested in promoting health literacy, and
    4. Researchers?

My preference would be to include all of these and perhaps others.


Suggestions of goals

The goals of this organization might include:

  1. Promotion of health literacy in health care providing organizations (including acute care, long-term care, and community health care organizations) and in professional education and training for health care practitioners and researchers;
  2. Promotion of health and wellness information in adult literacy (including adult basic literacy, adult basic education, adult secondary education, transition to post secondary education and ESOL/ESL) programs;
  3. Development of health care-contextualized adult literacy curricula
  4. Provision of health literacy professional development for adult literacy teachers and programs, and health care practitioners and researchers; and
  5. Development and provision of professional development and training for health care-related digital literacy for both patients and practitioners (i.e. as more health care provision includes information and communication through computers and smart phones, providing and promoting training for health care practitioners, adult literacy practitioners and patients in how to achieve better health through digital technology)

David J. Rosen



Thanks for all your comments! I know that Michael and David gave us more questions to think about, but I have another one.

If you are a member of another professaional organization, what features of it do you think are worthwile?

These could be related to:

  • what it offers
  • how it is structured and run
  • how it sustains itself
  • the culture and "feel" it has developed

I think it's a great idea. I could see this organization becoming the consultative arms for multiple health professional organizations-where if we have members of the HL Association who are also members of their own professional organizations may be "appointed" as Liaisons to that organization (if that other organization is willing).  Having never started a professional organization I bow to the wisdom of others who have been involved in the groundbreaking. I would see our mission as to serve in consultative roles and promote health literacy competency for health care professionals that will improve the health outcomes of the people we serve. 

The HLA could sponsor annual conferences, publish a competency curriculum, serve as a resource of evidence based material, etc to serve as both educational and fundraising opportunities to make the organization self sufficient. A board of directors would need to be established, with management oversight. The local coalitions could (if they wanted) become affiliates or chapters of the national HLA. Benefits to joining would be access to the resources either some for free and others for a membership discounted rate.

Just some thoughts off the top of my head- but I'd join! 

Gale and Helen have built on my earlier comment about tangential involvement in the field.  And I agree with them and the others' thoughts that there could be value in such an organization.  My experiences in other professional associations have been mixed.  The bad experiences have generally stemmed from an organization becoming too (internally) political - too big for their britches, if you will, or trying to be everything to everybody and losing sight of the original purposes. As for establishing some sort of certification, I would caution everyone (or many of us at least) to recall what has been transpiring among interpreters over the past several years - complicated, vexing and exhausting are just a few of the descriptors that come to mind.  Are there any existing professional associations within which a specialized "council" or subgroup might be assembled?  Cost of participating is always an issue. Even though I too am the "go to" person regarding HL in my organization, it is such a minor role that it isn't even alluded to in my job description.  Unfortunately my employer wouldn't financially support such participation since they don't support credentialing-based memberships either.  I've got many more thoughts, especially about the mission or goals, but need to get back to "my real work" now, so I'll defer to the full-time HL professionals to debate for a while.  -shb  

P.S.  Is there a spell checker on this tool bar that I can find?    

Hello Julie and colleagues,

Great to imagine a national Health Literacy Association (HLA). I share and support many of the ideas already posted. I believe we need to find the right niche for such an Association as we consider 'logistics' such as funding, location, and personnel.

Several organizations already exist that are relevant to this discussion. Examples: PLAIN (Plain Language International Association), the Center for Plain Language, and Clarity-international. These groups already do some of the things proposed for a Health Literacy Association, such as hold conferences, publish journals, establish writing standards, give awards, etc. However, each of them is focused on just "part of the pie."

This is not intended to discourage an HLA, but to suggest that we carefully define the parameters. I imagine such as Association could be a chance to:

- Create a central point of contact for seekers and providers of health literacy resources such as conferences, educational programs, curricula, effective materials and media resources, etc.

- Develop ongoing collegial relationships between researchers and practitioners, perhaps leading to more "practice-based" research

- Raise political and social awareness of the critical importance of health literacy as it crosscuts medicine, public health, and health professional and adult education programs

- Create a high enough "profile" of the issue that medical care systems provide resources (money and personnel) adequate to address it

- Engage researachers, practitioners, educators and professionals from diverse fields (e.g. human factors engineering, psychology, lingustics, etc) in collaborative learning

"Hats off" to those of you working on this effort. I look forward to further discussion.

Sue Stableford, Director UNE Health Literacy Institute

Founding Member: The Clear Language Group

My membership in other professional associations has been very mixed, but in part because they're so general (e.g. National Assoc of Science Writers).

Things that seem valuable based on that experience:

> Local groups in major cities that meet monthly and gather for behind-the-scenes tours, speakers, and just getting to know others in the community etc. (Chicago Sciences Writers group is very active and has been a great cross-pollination of many different kinds of writers and good contacts/networking and even volunteer work)

> Both FT and freelance job postings that are up to date with actual payment/salary and direct contact info. And in my experience members being able to post jobs is really helpful, and helps ensure there are worthwhile listings for people to look through.

> With NASW, access to their related journal is nice - but even just a couple of people being in charge of posting/cataloging the latest research/meaningful news in health lit would be helpful - this could even just be done via a Twitter account - but would be nice to have a repository somewhere of actual articles to reference by topic.

> For a while the NASW had a communal blog site that was nice, you could create a mirror site for your own blog and cross post any blog articles there and it alerted members to new articles. Of course, having our own blog with a blog roll of other health lit bloggers would be great.

> Membership listing alone can be helpful - especially if it's online and easy to look people up. As is a comprehensive calendar of health lit conferences/events, webinars, etc. throughout the year.

> Mentor programs. NASW gets science journalism students, etc involved as student members and has some kind of mentorship program. Haven't participated, so i don't know what it's like. But also posting internships, or helping hook students up with internships would be great.


Other ideas:

> It'd be great to have a listing of both research that is going on and other efforts that are underway at places like AHRQ.

> On that same note, places like Emmi are always willing to make our programs available for research... so a place where people can look up existing resources that are available for research and who to contact... btw, that's me if anyone is interested.

> Health literacy in the schools: I know some people have worked on this. But making curricula available for the most basic health info everyone should be taught in grade, middle, and HS, possibly with free resources. (Again, something I might be able to talk Emmi into "donating" a program or 2 to)

> A conference is nice - but there seem to be a fair number of them already. Maybe some kind of speaker/trainer for hire listing - if people are looking for someone to come give a talk or talk to a certain group of docs, etc.

> Finding ways to share info/speakers with other related associations like SMDM.

> In terms of cost of membership, it has to be reasonable - i think most of my memberships are between $75-200/annually with a discount for paying for a 3-year membership. And I don't know if any sort of company/membership would be possible with a base rate and then a certain amt per member. But we now have 5 writers plus me...so that's a hard arguement to make if we need to pay $200/person.

I think a certification process would be great through a national organization. It would give credibility to those of us who currently are just HL evangelists in our organizations.


  • What would be the mission of such an association?
  • What services/resources should it provide?
  • How would membership be structured?
  • What would be the cost and the benefits of joining?
  • A very interesting thought and possibly the need of the time as well.

My reasons for the creation of such an organization include

1. Setting and assessing HL standards of health care and health related organizations. Accrediting organizations' HL status.

2. Creating and providing resources to organizations to acheive the accreditation as a HL organization.

3. Creation and dessimination of tools to consumers, ESL institutions and those working in health fields to improve their knowledge and skills pertaining to health literacy

4. Provision of grants and resources to HL researchers to promote research in the field of HL.

5. Dessiminating new knowledge pertaining to HL to consumers, health care organizations and those working in the field of health care.

6. Collaboration with national, regional and state level organizations to frame and advocate policies that promote HL.

I think that there is a need for creation of a task force that undertakes the mission of developing a mission, goals, objectives, by laws, structure and sustainability of such an association.



Nadia Ali M.D, M.B;B.S, MPH, FACPAssociate program director, Dept of Medicine,Crozer Chester Medical Center,Upland, PA 

Our field has developed to a point where we need to start taking our own professional development and the development of new professionals interested in this work more seriously.  A Health Literacy Association could be a platform for just that.  Developing a set of competencies that a health literacy professional should have is an important step, and offering support so that those in the field have and develop those competencies would be an important role for such an association.  I would like to help develop a health literacy membership association that is reflective and representative of a very broad base of individuals and perhaps organizations committed to health literacy work, and supports where we want to go and what we want to accomplish.    

I second Sabrina's point about needing to represent a broad base of people, disciplines and types of organizations. What makes HL unique as a field is how many different partners there are. Many HL people are likely to be mainly involved in another field and maybe even another professional organization. (For example: medical education, adult education, health education, public health, libray sciences, social work... the list goes on!)

I really liked Andrea's idea (see Anovak, above):

I could see this organization becoming the consultative arms for multiple health professional organizations-where if we have members of the HL Association who are also members of their own professional organizations may be "appointed" as Liaisons to that organization (if that other organization is willing).

Has anyone seen this done in other associations?

How else can we make sure to reach out to and serve our broad base?

I think one way we could do this is after the HLA is formed, identify those people who have the skills, knowledge, etc and who already are members of other national health professional organizations and would take on that role- voluntary at first- maybe a stipend of some sort as money comes in- and then also identify the key leadership at each of those associations- (the individual would surely know who their president is) and then have the dialogue between leadership- offering the expertise- which is a double bonus- not only does that organization have resource, but even better is that that person is also very familiar with the needs of that particular organization and challenges it faces pertaining to HL issues. Hopefully the other organization would see the benefit to having this type of resource- and could even form SIGs within that organization (Special Interest Group).


I also endorse a national Health Literacy Association.  As a member of two other professional health organizations, I have many opinions and ideas, and will attempt to present them concisely here.  Do feel free to contact me for further details.

Mission:  I think it should be a broad organization, not just limited to credentialing.  A broader base means more members, more money and more volunteers plus access to other organizations. 

Services: It should set standards, be a resource center to the public and members and provide publicity to the public.  Member-only services are also needed to attract folks to pay the membership dues.  Two of the most popular member-only services offered at the Academy of Nutritioin and Dietetics are the Evidence Analysis Library (evidence-based practice guidelines, toolkits and educator modules) and the Dietetic Practice Groups (26 professional interest groups designed to share practice tips for annual dues from $5-35/year). I believe one reason the practice groups are so popular is that they are mostly conducted online so accessible to anyone.  They all operate under similar bylaws set by the Academy but are each very different.  Each has it's own officers, newletter, website, and online discussion group.  Many offer CEU via webinars which are free to members, and marketplace areas for members to market their services.  I have heard more than one RD say that the only reason they belong to the Academy is to access the practice groups. The reason I provide so much detail here is that I think this is an ideal way to accomodate an organization which has a membership with widely divergent skills and interests.

I would also note that both the services described above are run almost completely with volunteers.  The "payback" to the volunteer is citing leadership and management skill development for a national organization which they might not be able to access in their job setting.

Regarding the certification discussion that is going on--I think many folks in health literacy already have a professional identity in at least one field and are maintaining credentials there.  I would discourage a credentialing approach (national exam, initials after name, required continuing education etc.).  Instead, I would like to see specialty certification opportunities eg.  plain language writing, staff training, project management.  I think the organization could compile a list of programs already in existance that they approve and develop some of their own.  A member who completes the program would be able to state that they have certification in _______.  There are some examples of this in the Academy of Nutrition and Dietetics; some are workshops and some are online module programs.

Membership structure:  I think membership should be via individual.  Some people may be not working in the field and trying to learn about it.  In my field, employer reimbursement for required continuing education is rare even though they require maintaining the credential.  Money is tight.  They also rarely provide time off; you often have to use vacation time for conferences.  Online training and networking is very popular for this reason.  You can offer discounted member rates for online/automatic billing and for signing up for multiple year memberships. 

I think the organizations should be involved as "partners".  Especially in the beginning, you may want to be using their resources as part of the foundation of the association's resources so they will be providing "in kind" support.  I like the idea of liaisons between organizations.  I've seen that done in the nutrition field.  Liaisons attend board meetings of the other organization so can identify ways to partner.

Cost:  The cost of maintaining a national credential (eg. letters after the name) is about $50/year once you have taken the exam and excluding the cost of continuing education. Membership in professional organizations separate from credentialing is a couple hundred a year.  These are for groups which put out a journal and provide extensive member services and public outreach/advocacy/maintain political action committees as well as a national conference.

Regarding conferences:  Conferences are wonderful, but having been a conference chair I would emphasize that they take an enormous amount of effort, money and volunteer power to set up.  If you are lucky, you make a profit...usually from your vendors.   I would discourage a national conference until a national organization is established.  There are many HL conferences already that the organization can promote.

In summary, think broad, keep as much online as possible to minimize participation barriers, plan on using lots of volunteers and look at other organizations to find out what their members like and their best practices.  Start a liaison list to gather information.  The membership is what will keep the organization allive.  I think a national health literacy organization is a great idea....when I wanted to learn about this field it was really hard to put all the pieces together.


I don't think I have anything to add to the previous posts that have outlined the purpose, services, membership and cost of a health literacy professional association, but given the fact that we all have starkly different needs in this growing field, I think a deeper discussion is worth the investment.  At the Wisconsin Health Literacy Pre-Summit meeting this Monday we will take a summary of the previous posts and add them to our discussion.  We can then continue the conversation at the IHA Conference in May with the additional insights.  For those that are part of this broad LINCs community, please contribute your ideas and know that they wiill have a venue for further exploration in the very near future.  I am curious as to how such a diverse and broad field that includes adult literacy providers and students, cllinicians, researchers, insurance providers, public health officials, health educators and more can all be served as health literacy professionals (even if it is just a small part of what we do in a day) under one professional association.  The task seems formidable, for sure, but given what has been accomplished in the field in the last 10-15 years, I get the feeling that this can happen too.

My two cents--have been lurking a long time, but to push this along. In one sense, this discussion group is already a de facto HL Association--at least, its practicing membership. The question is whether to become more formally organized, and thus more visible to others beyond 6 degrees of list members. With time, such an organization will demonstrate whether and to what extent it justifies its existence, though as a free-standing organization not authorized by or under the auspices of an already existing one (AMA, Missouri Health Fdn, Harvard Med School, etc.) its credentialing power will be self-conferred. The question of cost/funding is a good grounding one. What if, to keep membership as broad as possible, the nascent organization is sponsored under the umbrella of a fiscal agent (which then would mean we could avoid for now the costs for extensive overhead and admin services) and asked for $5-10 from new members (individual) and see how many of us are willing/able to contribute--to give us a ball park feel for whether it's time to start up? (you see I am not feelin particularly well off today!). Modest thoughts. Arthur

I might be interested--depending on dues (a big deal when dues get pricey). It does give this emerging field a little more cache. But I'm not sure what it would actually net me. I agree with the person who said access to this group gets me a lot of access to experts and resources. What I'd find interesting is if all the HL coalitions joined andd there was work to both establish HL coalitions in each state and to broaden who belongs to an HL coalition. I think (understandably) we preach mostly to the converted, but would do well to reach out to health organizations, NGOs and state and local health depts to be integral players. 

As both a consumer and developer of health literacy information and tools, I would love to see an HLA that could be a repository for what is emerging from the field, from peer-reviewed articles to home grown sample forms. Health Literacy Missouri briefly, but no longer, was serving that function. It would be convenient one-stop shopping that could save a lot of people from having to re-invent the wheel. A decision would have to be made whether this would be a caveat emptor site that anyone could post anything to, or whether there would be criteria for and quality control on what gets posted.

As a federal employee, my employer would not pay for membership to such an organization. I would be willing to pay a "reasonable" amount (e.g., $100-$150) for an individual membership. I think any dues structure would want to differentiate individual, institutional, and perhaps even coalition memberships. 

I would not be able to be actively involved in an organization that does lobbying. No one has suggested that the HLA would lobby, but I just want to put that out there.

I like many of the ideas that previous posters have suggested, such as the HLA serving as a bridge between the research and practitioner communities and developing a speaker's bureau. You could have a member spotlight (like the IOM Roundtable on Health Literacy has) that could feature accomplishments of various members on a rotating basis.

Becoming a professional credentialing body strikes me as a potential long term enterprise, but not something to start with. Also, I don't know if I see a role for the HLA as an organization accreditation/certification body. Rather, I thnik the HLA could be involved with accreditors (e.g., Joint Commission, URAC) efforts to promote health literacy. There is a potential need in the field for an organization to be an independent certifier of decision aids, but I don't see that role being filled by a professional association.

Hi all, Creating a vision for this new association is not an easy task.  Health Literacy touches so many in so many ways!  But here are a few of my thoughts.

The mission of a Health Literacy Association would be developed by a board of directors for the Association and it may include:

to promote healh  literacy in ways that benefit the consumer and professional members  and provide appropriate  links to education, health care including access, immigration, and the National Action Plan for Health Literacy.  An appropriate Strategic Plan would be developed for the Association.

Some of the services and resources: advocacy, reseach, annual affordable conference, a journal and/or newsletter,  communities of special interest for members, curriculums, ehealth solutions, and trainings.

Special rates for memberships could be for students, retired professionals. The resources and services should reflect the benefits of becoming a member.  The Association would not want to duplicate what other professional associations in the field of health education, public health, medicine, nursing, etc. but would want to aim to complement the health ltieracy needs and interests  of such professional associations.

Having been on the Board of Directors for the American Association for Health Education, I gained an understanding of the importance of the value of professional associations to the members, who  should be foremost in planning the goals and objectives for the association. 

In addition, I just completed a term as Treasurer for the Maryland Association for Health, Physical Education Recreation and Dance where I learned and gained an understanding of how important the financial structure of the association is and that this needs to be transparent and well-managed with the membership in mind.



Everyone has shared great ideas on what an organization might do for the field of health literacy and for the professionals involved.  I would like to stress 2 points.  First, I feel the organization must be multidisciplinary in order to truly address the needs of the patients and clients we serve.  No one profession-health educators, nurses, doctors, dentists, dieticians, etc.- has the answers or the ability to take on a problem of this magnitude.  Only by working collaboratively and sharing across disciplines will we make any strides in overcoming the health literacy beast.

Second, I feel it would make the most sense to join as an affiliate, partner or special interest group of an existing organization.  By finding an organization with a strong working board who is amenable and has a like mission and vision, you will acheive results much sooner.  Less time and energy will be spent setting up the structure, general office, policies, etc.  Rather, the time and energy can be invested in actually doing the work.  As a member of the board of the Health Care Education Association, www.hcea-info.org  I can say we would be very interested in exploring how just such a partnership might work. 

Kimberly's suggestion about affiliating with HCEA is a great idea.  I've been trying to think of an appropriate type of group with which to partner (or collaborate or piggyback) and kept coming up with zilch.  Maybe HCEA would welcome a new special interest group/society dedicated to Health Literacy?  -shb

Thank you, Julie, for starting this conversation. It's great to see all of the participation and so many great ideas for what the HLA could become. I don't have too much to add, so instead will just pull out a few elements from earlier comments that I think are particularly valuable.

1) Membership should be interdisciplinary, open to individuals who work as healthcare providers, health educators, public health professionals, trainers and health training agencies, and adult literacy organizations with a particular interest in HL.  I doubt individual instructors would get involved, but imagine literacy coalitions such as Florida Literacy Coalition, Literacy Wisconsin, and my org, The Literacy Coalition of Central Texas would be interested.

2) Working exclusively in health literacy, I still get a sense that the issue is still an afterthought for many healthcare providers and literacy instructors, even as they develop into PCMHs and Accountable Care Orgs, and as research continues to come out linking low health literacy to adverse health outcomes. A professional HL association would likely help us move the issue forward in becoming a mainstream concern at the front of people's minds when considering healthcare quality, patient safety, and reducing health disparities. It would be a good source of klout for individuals and agencies trying move the HL needle forward.

3) Services: a) develop, publish and continusously evaluate and refine HL competencies for healthcare providers, systems and individuals. I know the field is has developed pieces of this (10 Attributes, Dr. Coleman's work with competencies for providers, and the Tufts HL Leadership Institute's work with individual competencies), but we still have a long way to go. b) serve as central hub for HL resources, research, etc. c) National meeting/conference. d) formalize this LINCS network and other more informal national HL networks.

4) $100-200/yr sounds appropriate. Membership grants access to member contact information, compilation of HL resources, attendance at annual conference.

-Peter Morrison


Hi all,

Just joined by invite from Julie and Geri. Since more than a year ago, a few of us started this conversation for a international health literacy associatoin that is grounded in the science and research on the topic back in Southampton, UK. Since then, Michael Paasche-Orlow and I had another meeting at the last HARC conference. Much is already under way, and think this is very, very important to carefully think about a few things.

Most societies get merit and value by having an association that is driven by an evidence base. This means having a peer-reviewed publication, annual scientific meeting, as well as opportunity to share best clinical practices to foster a common knowledge base. I suggest that at the next HARC meeting this fall a discussion happens that includes more of those interested to learn what is already underway and to help shape next directions. If you are interested, please contact me and I will be happy to provide a bit more detail and figure out with Michael for HARC how to set up some sort of pre meeting. Duplicating efforts will only harm a field that already has enough detractors. But this is really amazing to see so much interest and support for this. Very, very sorry to have to miss both the IHA conference that been fantastic (thanks, Michael V) and also the Wisconsin HL summit that I have enjoyed, but have fun and report back!


Michael Wolf



To Cindy's point about "disclaimers" for HL materails shared to a HLA website--actually, it would be a convenient place for literacy council to review and vote on the proposed texts, with feedback for improvements, based on actual experience of intended users. That would be an really helpful function--we devise but don't always have such easy access to "real" users/patients/those whom the literacy council is serving.

When considering an association let's remember professionals and students who do not serve patients. There are such fields as public health, social work, adult education, communications who have a stake in health literacy. I recommend such an interdisciplinary approach.

I second the need to include health literacy professionals who do not directly serve patients. Please do not forget to include those of us in communications and publishing who create materials -- many of us spend most or all of our time thinking about health literacy and actually do have it listed in our job descriptions.

In my experience with other professional orgs, some of the most valuable membership benefits have been:

  • a robust website containing easy access to commonly needed resources such as "tip sheets" and articles on topics/problems that members have faced, links to podcasts or webinars, and members-only message boards/listservs
  • access to journals
  • job boards
  • contests (granted, most of these orgs have been journalism- or writing-related, but could still be useful for an HLA)
  • opportunities for professional development, including annual meetings, one-day workshops and [cost-effective!] webinars
  • opportunities to have our voices heard through partnering with other, larger organizations and/or government efforts (even on a short-term project basis)

Thanks for asking us to weigh in on this topic!

Hello, friends,

There are so many great ideas flying! If we could do ¼ of them, it would be awesome. But as Michele Erikson said, it seems a formidable task.

I have been involved for years with the Plain Language Association InterNational (PLAIN) (www.plainlanguagenetwork.org). I was on the Steering Committee for several years and was also the program chair for one of our international conferences so I can speak to some of the work required to form a new organization. PLAIN is similar to our proposed HLA in that we are multidisciplinary and all concerned about improving access to information.

We’re an international community of volunteers. A small core group has devoted huge amounts of time to creating a board, writing bylaws, defining membership, etc. and it was a monumental task. We have been discussing credentialing and standards for years and are making slow progress. We are working on defining plain language, how to measure whether materials are reader-centered, who will evaluate whom, etc.

We need to be realistic and think about how much time we have to devote. These kinds of organizations require massive amounts of volunteer time. I support two key items that have been mentioned:

  • We should identify the many other organizations dedicated to health communication, patient education, and plain language, and see if they might welcome us as a special interest group. Being able to take advantage of already-developed organizational structure would allow us to put our energy into more health literacy work.
  • I see a need in the field for a repository of well-done, easy-to-read materials but we would need to agree on standards and figure out who would decide eligibility.  This seems to be one of the most helpful contributions we could make to the field.

I don’t think credentialing is something we should take on. I don’t believe there is enough agreement in the field about what constitutes “health literacy competencies” at this point.

So let’s start small and see how much energy and time people are able to contribute. We can always build on our successes and grow down the road if the interest and commitment is there.


What an interest discussion on creating a helath literacy association, and long over due. A few more comments to think about:

  1. Why doing this? To promote the recognition of the field and the profession. Of course, to provide a medium to collaborate, communicate and disseminate health literacy knowledge, best practices, research and resources 
  2. Membership: It could be at different levels, individual professionals, students and organization/corporations. So the membership fees will also vary for any of these groups. Each group will have different interests and agendas so they can create subdivisions to work on their own issues and priorities.
  3. Governance/Structure: A non-profit of course, but with a board of directors who will have to be elected by all members. Perhaps it should be a representation of the various subdivisions or disciplines.
  4. Other ideas for services provided by the Health Lit Association: 
  • To create a general code of ethics, guidelines and protocols 
  • To establish a Certification/Accreditation program. It will be ideal to have this in place to make sure that the health literacy practitioner is a established profession and that those practicing demonstrate that they meet certain standards, practices and competences 
  • To promote professional development, leadership development and mentoring of new or young emerging health literacy professionals
  • To foster relationship and collaboration in between members and with other fields in health care and related organizations  
  • To support research practices and publications (already mentioned a lot)
  • To produce hand books and guides based on the standards set by the association 

5.Should it be a local or an international association?

It will be great to work in conjunction or be part of an international association, but why not creating the American Health Literacy Association?

United states is so big and unique that probably can support its own association and even collaborate and support the work of an international group or groups. 


I am from Austria and HLit is here really unknown.

But I want to start my own campaign, because there is a lot to do and our government is not so fast (as everywhere).

I am alone - without a great organisation in the background - so I am searching for free pictures, videos and cartoons to translate and some other useful information. The healthliteracy.eu homepage is online - and there is now a facebook fanpage Health Literacy Checkpoint Austria online. I also provide in german information about this topic on twitter (@AlexRiegler)

If somebody can help me - it will be fine.

If you start a assciation I will join if you allow.

(sorry for my english)


best regards,


Jana Uryasz, a registered nurse, often acts as a go-between for patients and doctors by translating medical jargon into plain language for instructional documents. Many hospitals today have positions for people such as........

Read the entire article written by published yesterday by Mohaba Ravindranath published yesterday in the Washington Post


Better Health: Evaluating Health Communication (Lecture 3 of 5)

There are more and increasingly diverse ways for health information to reach the public. The interest among Americans to receive health information also remains high compared to most other topics. To maximize the impact of health information on the nation’s well-being and empower consumers, communicators need to know whether their messages are reaching the right audience, whether the information is understood, and whether the materials make a difference in decision-making and health outcomes. As a result, evaluation is an integral and crucial part of health communication.

NLM is presenting this lecture series to highlight innovative approaches and best practices in evaluating health communication. As NIH and NLM diversify their use of mass communication channels to dispatch health information, a fresh consideration of evaluation’s cutting edge is timely and important. This is part 3 in a 5 part series.

Andrew Pleasant, PhD, Health Literacy and Research Director, Canyon Ranch Institute, Tucson, Arizona, and faculty member, The Ohio State University College of Nursing. A pioneer in health literacy research and evaluation, Dr. Pleasant is a member of the Institute of Medicine's Roundtable on Health Literacy and the Scientific Committee of the International Public Communication of Science and Technology Network.

Gary Kreps, PhD, discussant

For more information go to http://www.nlm.nih.gov/news/com_lecture_kreps.html

Wednesday, April 10, 2013 3:30:00 PM EDT (-0400)

Andrew Pleasant, Ph.D., Health Literacy and Research Director, Canyon Ranch Institute, Tucson, Arizona

Runtime: 2 hours, 30 minutes