Archive for the ‘Social media’ category

Patients Voices Network

April 28, 2011

Earlier this year, I had the privilege of attending a Patients Voices Network (PVN) training session. PVN is a program that recruits, trains and supports patients and their families to participate in primary health care changes.  For an interesting and informative overview about their work, see the video below which is also on their website.

PVN provides impressive opportunities for consumer participation:

  • An online community or virtual network of patients that register to provide input through response to surveys
  • Activated network of trained patients who can be involved at three levels:
    • Shaping the system: participating in focus groups, patient advisory committees and panel discussions; patient journey mapping
    • Community Activation: working in patients’ local communities to improve primary health care
    • Peer to Peer Coaching: supporting and motivating individuals to achieve healthy living goals.

One point that stood out for me was the positive approach that was emphasized by PVN. Patients’  may first be compelled to become activated members of PVN due to negative experiences with the healthcare system. While their frustration is understandable, it is important that theyare motivated by a desire to provide constructive feedback rather than hostile criticism.

Another highlight of the workshop was listening to Johanna Trimble speak about her involvement with PVN and what she has learned along the way. She had many positive experiences to relate but also cautioned participants to be balanced and acknowledge their limitations ie. not to volunteer for each and every opportunity.  Johanna, a steering committee member, has spoken at international conferences about her experience with the health care system and her presentation Is Your Mom on Drugs? – Find out what to do about it” is most compelling.


Palo Alto Medical Foundation: a social media success story

June 1, 2010

I first got to know Erin Macartney, of the Palo Alto Medical Foundation, during weekly Twitter chats for the health communication and social media #hcsm community. Since then, we’ve had numerous conversations and I am very impressed by not only what Erin has accomplished with social media but also her personal and professional commitment and passion. She kindly offered to share her organization’s social media strategy. What strikes me is her organization’s commitment to provide information to patients in the mode they wish to receive it – whether it’s through social media channels, traditional communications (patient newsletters and health education mailers), e-newsletters or other communications methods.

The Palo Alto Medical Foundation (PAMF) for Health Care, Research and Education is a not-for-profit multispecialty health care provider. PAMF is located in California’s San Francisco Bay Area. With more than 900 affiliated physicians and 4,300 employees, PAMF serves more than 655,000 patients at its medical centers and clinics in Alameda, San Mateo, Santa Clara and Santa Cruz counties.

Q: How does PAMF view social media?

A: We see social media as a natural extension of our two-way patient communications, ongoing conversation, information sharing and patient empowerment. Listening and having discussions helps us to continue to learn and improve upon the quality of our organization’s health programs and services.  Having these newer social media tools now available to us gives us another way to connect with people – in a way that they like to receive information – and allows us to hear from them, listen to them and respond more personally and in real-time

Palo Alto Medical Foundation FaceBook screen capture

Appreciative feedback means PAMF's FaceBook strategy works

Q: What are some keys to communication in health care social media?

Honesty, respect, accuracy, timeliness and trust – to name just a few. Open communication is important – in all directions.  When it comes to health news, it is important get your information out as responsibly as possible.

Q: What types of information does your organization share using social media?

A: Using social media, we share health articles and information, organizational news, wellness tips, class and lecture information and registration, physician videos and more. We try to include a variety of things that will appeal to people – whether it is targeted medical news, or a photo album of employees walking to raise money for the March for Dimes’ “March for Babies” event, or pictures and mention of our medical staff offering free breast health information at the Stanford women’s volleyball game during “Breast Cancer Awareness Month.” It’s all in there. We try to keep things friendly, informative, fresh and fun – and most of all, helpful.

Q: How does your organization integrate its social media strategy in our overall communications planning and activities?

A: Social media is a key component of health care communications at PAMF. So, over the past few years, we have repurposed many of our traditional communications activities as social media. We see social media activity as seamless with our traditional communications. Hopefully, they work jointly to help bring people health information and connections – in the way they want to receive and use them, so they can be active partners in their own health and health care team.

Q: Which department manages social media at PAMF?

A: The Public Affairs Department coordinates and manages our social media program and we include many other areas of the organization in idea sharing, information gathering and communication planning. We regularly tap into the expertise of our marketing and health education colleagues to broaden our team and reach. Ideally, we’re working towards everyone in the organization all acting socially in a coordinated way. Our goal is to offer useful information to people, to listen to them and have conversations that are meaningful – so we can better meet their health information and communication needs. We are patients too, so we always try to keep that in mind.

Q: In addition to social media, what are some of the traditional communication tools your organization uses to share health information?

A: In addition Facebook, Twitter and YouTube, we have a health and wellness newsletter, called “Foundation for Health,” that is mailed to patient and community households. We also produce patient e-newsletters that are delivered to subscribers’ inboxes. E-HealthNews is our largest patient e-newsletter with 75,000 e-mail subscribers. We also have a parenting e-newsletter and a South Asian Health e-newsletter that are delivered via e-mail subscription. Our “Community Highlights” mailer includes free health event and lecture information available at our different locations.

We try to combine traditional and online opportunities. Therefore, the PAMF health events and lectures are posted online on the website home page, health education website and promoted on Facebook and Twitter. People can also register for classes and events online via our website and Facebook page. Lectures and events are free and open to the community.

You can find the Palo Alto Medical Foundation on Facebook and Twitter. Erin Macartney is a public affairs specialist PAMF. You can follow her on Twitter at @emacartney.

Social media session at IHA Health Literacy Conference 2

May 15, 2010

I recently had the privilege to facilitate a social media session breakout session at the  9th IHA Health Literacy Conference. For the background, see earlier post.


With Rosetta Keeton, St. Louis ConnectCare

Rosetta Keeton planned to use FaceBook with her teen audience

It was very heartening to hear several participants say that the presentation encouraged them to think about using social media tools in ways they had not considered before. Rosetta came up to me during the reception and said that she had learned a lot of useful ideas. She was very enthusiastic about David Armano’s “listen, learn and adapt” cycle and was considering FaceBook for engaging teens in an upcoming theatre for HIV prevention project. To the extent that the session stimulated interest in social media tools and got participants thinking about new ways of reaching their audience, I consider the session highly successful. The participants expressed appreciation for the handout and I continue to receive positive feedback. I am in the process of moving the handout to Google Docs so that it can be collaboratively edited.

Lessons learned
  • Polling the participants ahead of time was a good idea. Pro: I was able to get a sense of the audience, learn about their needs and invite some advanced users to contribute their experiences. Con: There was no way to respond to all the fantastic issues in a 90 minute session.
  • I knew from the poll that participants were at different levels of experience but I was still thrown off by the challenge of engaging such a mixed crowd. Happily, they were all a model audience – enthusiastic and eager to learn. With the focus of the session on examples and strategies, there wasn’t enough time to address questions such as: what’s a Twitter hashtag in satisfactory detail as I worried about boring the advanced participants stiff with indepth explanations of  basic concepts.  Clearly, I was expecting too much when I asked the busy participants to review my social media 101 post as many beginners needed to learn what the tools are and how they work. There are many barriers to learning – for example, one participant  explained that she couldn’t review the post because her workplace blocks *all* blogs!! Beth Kanter, who is a social media training guru may have valuable input on how to address the challenge of mixed level groups and I wish to acknowledge her wisdom which she generously shares on her blog and social media lab wiki. The ideal scenario would be separate sessions for beginners and more advanced learners.
  • It may be helpful to divide the participants into loose groups based on their target audience. It was clear that those targeting patient groups face different challenges from those reaching health literacy practitioner communities.
  • I may have tried to cover too much content too quickly and with hindsight, it was overly ambitious to expect the participants to work on the  activity that I had planned for them – an exercise to brainstorm their audience, objectives, strategies and technologies [based on Forrester’s POST methodology].  There was not enough time to absorb the basic concepts and envision implementation particularly for the beginners.
  • Helen Osborne, who I respect a great deal, had valuable feedback for me. She was very interested in my analysis of my pre-session survey findings and would have liked us to spend more time on this.
Plenary session at the IHA conference

Plenary session at the IHA Conference

Next steps

The participants had lots of questions and we ran out of time while there was a clear appetite for animated discussion. Predictably, a common concern was how to address privacy and HIPAA regulations and my basic response was a) HIPAA applies to health care providers not patients b) get informed consent when interviewing patients for blogs c) use social media for general education not specific patient advice. Other concerns: What do you do with negative comments? How do you track all the FaceBook comments about your organization? How often should you post updates? Sara Browne, a physician made the valid observation that it’s challenging to keep up with all this information without experiencing an information overload.

To address these and other issues raised in the pre-survey, I offered to start a forum where we would continue this conversation. I am considering creating a FaceBook page where participants can hone their skills with this platform as they share their experiences with and learn from like-minded colleagues. I wish to acknowledge the wonderful contributions of all those who I have consulted on my journey to IHA where I gained rich insights. I am particularly grateful to Erin Macartney of Palo Alto Medical Foundation for diligently compiling excellent content which I am working into a blog post. And of course, a big thank you to my wonderful audience many of whom spoke to me afterwards and planned on staying in touch.

I welcome thoughts from all: the session participants and those who have facilitated similar sessions on how to sustain these great conversations.

Social media session at IHA Health Literacy Conference 1

May 15, 2010

My journey to IHA, California

Gloria Mayer and Michael Villaire, Institute of Healthcare Advancement

With Gloria Mayer and Michael Villaire, authors of "Health Literacy in Primary Care: a Clinician's Guide"

About 6 months ago, Michael Villaire, Director of Programs & Operations, Institute of Health Care Advancement [IHA] asked me to facilitate a social media session at the  9th IHA Health Literacy Conference. He approached me based on Farrah Schwartz’s recommendation which was in turn based on following my blog and tweets! Now, there’s an incentive to blog and tweet!!

The “social media and health literacy” brief sounded straightforward but as I started to delve into the presentation, it dawned on me that I was not sure how best to approach this. For ideas, I contacted expert social media trainers such as AIDSgov staff [Jennie Anderson, Josie Halpern-Finnerty & Michelle Samplin-Salgado], Lee Aase of Mayo Clinic and Beth Kanter, We Are Media project. I also reached into my #hcsm network where I connected with @emacartney, @macobgyn, @pfanderson and @mindofandre among other great minds. Everyone was very helpful. I then polled my participants, posted the results and  compiled a brief primer for the beginners in the group.  In my preparation, I borrowed heavily from WeareMedia and AIDSgov resources and quoted liberally from Lee Aase’s social media theses. In the spirit of crowdsourcing, all I did was synthesize these great ideas, compile these resources and then facilitate a conversation.

Finally, Thursday, May 6 arrived and with it, a mixture of trepidation and excitement. There were two sessions of about 70 each, filled to maximum capacity. Technology worked smoothly with a [not so] minor exception: having to change a few minutes prior to the presentation on finding out that you cannot wear a dress and use a wireless mic because it comes with a heavy gadget that needs to be clipped to a belt!!


With Bonnie Graham, Knox County Health Department

Bonnie was very keen to explore social media tools for her health literacy work

To my delight, social media proved to be a topic that engaged everyone a great deal regardless of their knowledge base. Based on participants’ responses to my poll, I focused on a) examples of social media use in various settings and b) strategies for social media execution. I begun with Pew and Forrester data on the adoption of these platforms by different demographic & psychographic profiles. I  then highlighted examples of social media use to reach both patients and health professionals.

The widespread use of cellphones and their potential for engaging low literate populations struck a chord with many participants as I discussed the intriguing Dietary Intake Monitoring Application (DIMA), a mobile, electronic food diary for low-literacy patients developed by Kay Connelly’s team [Thanks to @pfanderson for highlighting this on her blog].  Among others, I  featured the Mayo clinic culture blog, AIDSgov, Erin Macartney’s Palo Alto Medical Foundation’s FaceBook/Twitter successes, Dr. Susan Giurleo’s psychotherapy practice and @MacObgyn’s fantastic patient education portal. A participant pointed out that health providers have tended to neglect the health information needs of the deaf and hard of hearing, a growing population. She pointed out the helpful resource which provides health information in American Sign Language [ASL].

I also asked the more advanced users of these technologies in the audience to share their own experiences. For example:

  • Sam Petitjohn explained how Health Literacy Missouri is using FaceBook and Twitter to build a community of health literacy practitioners.
  • Manisha Shah, National Patient Safety Foundation mentioned how they are using FaceBook to share patient safety information
  • Helen Osborne chimed in with a great example of how she had used Twitter to elicit questions for her Health Literacy Aloud podcast interviews [and received input from quite a few people including myself].

It is noteworthy that the above examples are targeting health professionals and not consumers/patients, implying that barriers [real or perceived] are lower in using these tools to engage health professionals. Many participants were interested in strategies to communicate with patients/consumers while respecting HIPAA concerns.

Tough questions

Understandably, some participants were skeptical about whether these tools would work for their audiences:

  • One said that neither she nor her audience was using these tools but she saw the potential of cellphones.
  • Chellappa Kumar said that his low literate patients were not necessarily using these platforms but the tools were valuable for reaching his physician faculty with health literacy messages.
  • Janet Ohene-Frempong asked whether there was data was available on the use of these tools in low-literate populations.
  • My response was: “indeed, I haven’t found hard data proving that all low literate populations are active users of these platforms because different audiences are on different media as clearly evidenced by the Pew research reports. However, one thing we can be sure of is that these tools offer valuable potential such as rendering health messages into audiovisual formats that are more accessible than traditional print and very importantly, shareable.” I haven’t found much data on the outcomes but this Health literacy, ehealth and communication workshop report which addresses e-health  outcomes and challenges is useful. Chapter 4 is particularly pertinent.
  • Martha Torres-Montoya, State of California wanted to know whether there were any studies comparing the impact and ROI of  traditional vs social media. I promised to look into this and welcome any thoughts from those health communication gurus who are using a multipronged strategy of print, broadcast and other traditional media alongside new/social media tools.

For more reflections on lessons learned and next steps, see the next post.

Social media 101 for health educators

April 25, 2010

In a poll, participants in a forthcoming IHA conference on health literacy identified a fascinating list of issues to explore. I neither have all the answers nor can we cover all these issues in a 90 minute session but we can continue this interesting conversation beyond the conference via social media tools! For an overview of some of these issues, participants new to social media can review these resources.

This is of course representative not comprehensive. Please use the comment feature to  share your thoughts and suggest other resources.

Social media awareness among health literacy educators

April 25, 2010

By now, anyone who will listen [perhaps to the annoyance of my loyal Twitter followers] has heard that I will be speaking at the IHA Health Literacy conference in California on social media and health communication on May 6 2010 [see an earlier post]. I feel utterly humbled to be so honored. To prepare, I polled the registrants to find out a) What they know and b) What they want to know. The participation rate was a respectable 50 % which goes to show what a dynamic and engaged group they are. This posting is primarily for their benefit as well as input by all who are interested in social media.

Audience: comprises health educators, librarians, health professionals involved in direct patient care, writers and health literacy advocates working for varied agencies such as government, health care providers, HMO/health insurance companies and academic institutions. The majority of participants work in a program public education role – rather than professional communication/PR function.

Experience with social media:  Most of the respondents have had limited exposure to social media: 55% [hardly]; 32% [a bit]; 13% [a lot] some were a little skeptical but all were enthusiastic and eager to learn. One promised to sign up for a FaceBook account before the session which was lovely. Some are actively using these tools:

  • Facebook campaign to promote public health week; Fan page to inform, network and share resources regarding patient safety
  • FaceBook for posting events and communication with faculty and students
  • Twitter for updating staff teams regarding conferences – content used as press releases
  • Creation of podcasts
  • Wiki community to promote evidence-based practice information
  • Story telling using multimedia to promote health literacy month
  • Use of RSS feeds for health care classes, tracking blog postings
  • Locating health education videos on YouTube

The most popular tools are: FaceBook, YouTube and blogs. Quite a few mentioned LinkedIn. While it is tricky that participants have mixed skill levels, I am sure the more experienced ones will patiently help the rest of us and chime in with examples based on their experience. In fact, some participants have eagerly offered to share their experience and expertise which should make for a lively session.

Areas of interest

  • What are the state-of-the art technologies being used in health communication? How can these be applied to developing countries?
  • What tools can be used to reach
    • the general public
    • specific demographic groups – teens, African-American populations, seniors, K-12 education…
    • particular audiences with personal health improvement programs – reminders to exercise, do food logs…
  • What strategies do you use to connect with your audience ie. create and maintain quality dialogue? How do you get started?
  • How can social media tools be integrated into academics?
  • How do you grow your FaceBook presence for a health literacy partnership?

The most common question was how to know what tools to use for what settings, audiences or targets – essentially, how to create a social media strategy. I plan on allocating plenty of time to discuss this. The diversity of communication activity with faculty and students was enlightening because I had expected a health literacy conference audience to be mainly interested in communicating with consumers/patients/the public.


  • Legal concerns: what are the privacy and security implications of social media?
  • How do you prove value and quantify benefit?
  • How do you handle inappropriate use and abuse – such as students posting inappropriate content?
  • Aren’t social media tools associated with a digital divide – for those with limited English skills and access to technology?
  • Government computer systems restrict access to social media
  • Is this not yet one more thing to do with limited staff resources?
  • Social media tools are “incredible time wasters”
  • Some  residents would prefer to receive articles via e-mail rather than a blog
  • There seems to be an increasing focus on these tools at the expense of traditional channels which most of the population uses at this point

I am pleased to see this rich commentary from the participants who are thinking deeply about these pertinent issues. I welcome your input which will contribute to our conversation at the IHA conference.   In the next post, I have outlined some  resources for the participants [particularly those new to social media tools] to review prior to the conference.

Psychotherapist excels at social media

March 2, 2010

I e-met Dr. Susan Giurleo during a recent #hcsm session [healthcare communication and social media tweet chats held weekly and archived here]. I was impressed to learn that she was using social media to educate the public on mental health issues and on e-chatting with her, I discovered that she is a highly regarded licensed psychologist who works with kids and families living with ADHD and autism. Her blog is both a marketing vehicle for her practice and – more importantly from a public service perspective – a valuable parenting resource for families and the public at large.

Below are her insightful responses to my questions.

Which social media tools are you using?
I use primarily a blog and twitter.

What is your audience – patients, public at large?
Public at large, some of whom become clients

What strategy do you have in place? Do social media complement your other communication efforts?
Social media is my primary marketing approach. It is cost effective, easy to implement and has immediate turn around.

What policy do you have in place? What type of info do you disseminate? What commitment do you make re: responding to your audience comments
I share research findings, mental health tips (targeted to my specialty) and useful information on where people can go to learn more about a certain topic. I respond to most comments on my blog. I get emails as well and respond to those, even if it is just a quick, “thanks for your comment.”

How do you know what is working?
I measure informally (but all this can be easily measured via Google Analytics, if you use a blog). When I am consistent with sharing this information, my practice is booming. I also get emails from all over the world regarding my blog and newsletters. And this is dedicating 1 hr a week to it! The power of social media is amazing. If I did any more than what I currently do, I’d be swamped in my practice.

What time and staff resources are you spending on this?
The staff is me :-). I might dedicate 1-2 hrs a week on this. Like I said, the turnaround is fast and you don’t need to search too far to find relevant topics of interest.

How have you addressed privacy concerns and any other risks?
I don’t see any privacy concerns. Some people do email me with their specific concerns but I just email them back asking they call or if they live too far for me to help them, give them resources in their area. I never share any patient information, not even in ‘story’ form (i.e. “I have a client who…..”)
People intuitively seem to know that I can’t help them online if they are suicidal (never had any email contact regarding that issue) or in danger. I do put disclaimers on things like: “This content is for informational purposes only and does not constitute a therapeutic relationship or advice. If you feel you require more specific, personal support please contact…..”

Any concerns re: alienating those not yet in the social media space?
No. I feel people need to get on board. That is my bias, of course. In a few years it will be very difficult to find this information off line. With the slow death of newspapers and magazines and the fast growth of smart phones and tablet computers, we need to help people get online, not enable them to be passive and wait for the information to come to them. #hcsm is a great forum to explore all that. I think adding networked computers to medical waiting rooms should be the next wave in client support.

What I learned from Susan:
  • Social media works: Susan revealed that her social media strategy is so successful that her practice can hardly keep up with the demand for her services. A social media strategy can be cost-effective, providing immediate results – very attractive indeed.
  • Social media is very versatile: Susan is using social media to reach two audiences: a) educate the public about mental health at and b) consult with health care professionals on how to develop ethical online business and marketing strategies at
  • Whatever resources you have are adequate: As the sole staff resource, she spends minimal time on social media activities and yet has remarkable success with an enviable ROI.  Her secret is creating high value content.
  • Social media can be used responsibly: Rather than shying away from social media altogether due to privacy concerns, Susan has created a sensible framework for using the tools to educate the public and recruit patients. She uses disclaimers and has set her own ethical standards – such as communicating with patients using appropriate channels and never sharing patient stories.

Dr. Susan Giurleo is a licensed psychologist who consults with health care professionals on how to develop ethical online business and marketing strategies. You can learn more by stopping by her blog,