engaging with patients online: the do’s and don’t’s, and what’s to gain

Engaging with Patients OnlineThe do’s and don’t’s, and what’s to gain

Katja Reuter, PhDDirector of Digital Innovation and Communication

Southern California Clinical and Translational Science Institute (SC CTSI) University of Southern California

Presented at the Annual Meeting of the American College of Rheumatology (ACR) and Association of Rheumatology Health Professionals (ARHP), Nov 15, 2016, Washington

DC

Presenter Disclosure Information

Katja Reuter, PhDSouthern California Clinical and Translational Science InstituteUniversity of Southern California

Financial DisclosureNo relevant financial relationships exist.

Today’s Focus

Digital and social media communication strategies

Not reflected are promsing options such as mobile health, electronic health records, meaningful use, etc.

Defining a Successful Digital Scholar

Digital Scholar

Researcher who understands how to use the wealth of possibilities that the web offers to achieve his/her research goals.

Research Roadmap

Digital Scholar

Develop aResearch

Idea

Secure Funding

Designa Study

Start-Upa Study

Find Collaborators

Build yourReputation & Network

Manage YourOnline

Reputation

Collect & ManageYour Data

Analyzea Study

Measure your

Reach & Impact

RecruitStudy

Participants

Disseminate Your

Findings

Today’s Focus

1. The potential2. Finding and listening to patients online3. Developing your digital communications strategy 4. Engaging and recruiting patients through digital communication approaches5. Digital health content regulations, guidelines, and ethics6. Measuring the results of your digital efforts7. Online reputation management

The Digital Patient

Ref. Pew Internet Research. Social Media Usage: 2005-2015. Pew Research Center, October 2015.; http://www.cdwcommunit.com/perspectives/expert-perspectives/todays-digital-patient/

65% of Adults Use Social Networking SitesNearly tenfold jump in the past decade

Misconceptions

People don’t want to read about clinical research online.

Actually: The use of the Internet as a top source for clinical research information has increased significantly (46% in 2013). [Ref. Report on clinical trial information seekers. Perceptions and insights study. The Center for Information & Study on Clinical Research Participation; 2013.]

More than 40% of the public reports that they have used social media to learn about clinical research, with social network Facebook topping the list. [Ref. Harris-Interactive, 2004.]

Who Can be Reached through Social Media?

35% of all those 65 and older report using social media.

Young adults (ages 18 to 29) are the most likely to use social media – fully 90% do.

Women (68%) and men (62%) use social media at similar rates.

[Ref. Social Media Usage: 2005-2015. Pew Research Center, October 2015. http://www.pewinternet.org/2015/10/08/social-networking-usage-2005-2015/]

Misconceptions

There are no notable differences in social media usage by racial or ethnic group (65% of whites, 65% of Hispanics, and 56% of African-Americans).

[Ref. Social Media Usage: 2005-2015. Pew Research Center, October 2015. http://www.pewinternet.org/2015/10/08/social-networking-usage-2005-2015/]

More than half (56%) of those living in the lowest-income households now use social media.

Those who live in rural areas are less likely than those in suburban and urban communities to use social media (58% of rural residents, 68% of suburban residents, and 64% of urban residents).

Today’s Focus


Digital Scholar Presentation: Part 1

LeAnna J. CareySYMPLUR“What Rheumatologists Can Learn from Patients’ Online Conversation?”Monday, November 14, 2016

Social Media Listening/Monitoring

Listen to ongoing conversations about the study disease or related aspects to learn…

Who talks about the disease area?What do they say?Who are the influencers in the disease community?

Consider the voices of patients, physicians, disease advocates, disease foundations, researchers, medical centers

Tool Example: The Disease Hashtag Project

Ref. http://www.symplur.com/healthcare-hashtags/diseases/

Example: #Rheum hashtagRef. http://www.symplur.com/healthcare-hashtags/rheum/

Tool Example: Social MentionRef. http://www.socialmention.com/

What Do Influencers Say? What Social Media Platforms Do They Use?

Today’s Focus


Leverage the Spoke-Hub Model

Your Web Page is the Hub

Your Study Web Page is the Hub

Leverage the Spoke-Hub Model

H U B

Your Study Web Page

ResearcherProfile

v

OnlineSearc

h

Mobile

Yik YakYoutube

Reddit

Instagram

PinterestTwitter FacebookLinkedIn

Slideshare

Flickr

Snapchat

Share More than Your Research Publications

Research Data & Negative Results

Research Articles (Manuscripts)

Presentations

Images, Video, Podcasts

Perspective/Thought leadership

E x a m p l e s

Software Code

Contributing on Social Media

Share links: Photos, videos, infographics, tips, novel information, interesting facts, stats, quotes related to your study

Answer questions and provide value, e.g., share resources -- re-use existing content if possible (guide to managing post-surgery pain or infographic on new treatment option)

Share random thoughts, e.g., Without clinical studies, medical treatment would always remain the same. Thanks to all of those who participate.

Promote, encourage, and support others

Target specific populations to increase your relevance

http://33charts.com

Blog Example

Melissa TerrasProfessor of Digital Humanities in, Department of Information Studies, University College London; Director of UCL Centre for Digital Humanities. Twitter: @melissaterras

“What became clear to me very quickly was the correlation between talking about my research online and the spike in downloads of my papers from our institutional repository.

Academics need to work on their digital presence to aid in the dissemination of their research, to both their subject peers and the wider community.”

Perspective

http://digitalmediaandscience.wordpress.com/2012/10/05/more-people-look-at-research-if-it-is-promoted-via-social-media-a-case-study-2/

Tweeting an Open Access Paper

http://melissaterras.blogspot.com/2011/11/what-happens-when-you-tweet-open-access.html

Melissa TerrasProfessor of Digital Humanities in, Department of Information Studies, University College London; Director of UCL Centre for Digital Humanities. Twitter: @melissaterras

“Upon blogging and tweeting, within 24 hours, there were, on average, 70 downloads of my papers. Now, this might not be internet meme status, but that’s a huge leap in interest.”

Perspective

http://digitalmediaandscience.wordpress.com/2012/10/05/more-people-look-at-research-if-it-is-promoted-via-social-media-a-case-study-2/

Jove: Peer Reviewed Scientific Video Journal

http://www.jove.com, Example: http://www.jove.com/video/50182/movement-retraining-using-real-time-feedback-of-performance

http://www.jove.com/

http://www.jove.com/

Citing Social Media Content

http://blog.apastyle.org/apastyle/2013/10/how-to-cite-social-media-in-apa-style.html

Social Media Video

Figsharehttp://figshare.com

You can share…

FiguresDatasetsMedia (including video)Papers (including pre-prints)PostersFilesets (groups of files)

Slidesharehttp://www.slideshare.net

You can share…

FiguresDatasetsMedia (including video)Papers (including pre-prints)PostersFilesets (groups of files)

Turn Your Research Results into an Infographic

Infographics are liked 4x more than presentations,23x more than documents

Infographics are shared 2x more than presentations,3x more than documents on other social networks, such as LinkedIn, Twitter and Facebook.

http://image.slidesharecdn.com/071813slidesharemakinggreatinfographics2-ig-130721190926-phpapp01/95/what-makes-great-infographics-1-638.jpg?cb=1379569751

http://blog.slideshare.net/2013/09/11/infographics-are-more-viral/

http://www.easel.ly

Using Easel.ly to Create Infographics

Citing Infographics


Today’s Focus

1. Defining digital patient engagement2. Finding and listening to patients online3. Developing your digital communications strategy 4. Engaging and recruiting patients through digital communication approaches5. Digital health content regulations, guidelines, and ethics6. Measuring the results of your digital efforts7. Online reputation management

Examples of Digital Recruitment Successes

Pregnant women were recruited via Facebook and Twitter in 6 months (12-fold higher rate of ±7.5 recruits/month compared to traditional approach) [Ref. Shere M, Zhao XY, Koren G. The role of social media in recruiting for clinical trials in pregnancy. PLoS One. 2014 Mar 26;9(3):e92744. ]

45

529 Mothers accessed survey -- promoted via Twitter in nearly 3 months; 299 (56.5%) fully completed it [Ref. O'Connor A, Jackson L, Goldsmith L, Skirton H. Can I get a retweet please? Health research recruitment and the Twittersphere. J Adv Nurs. 2014 Mar;70(3):599-609.]

251 People who had searched for stroke-related information online completed survey -- promoted via Google Search in nearly 4 months (1% out of 25,292, 200+ website visits/day) [Ref. Kim AS, Poisson SN, Easton JD, Johnston SC. A cross-sectional study of individuals seeking information on transient ischemic attack and stroke symptoms online: a target for intervention? PLoS One. 2012;7(10):e47997.]

Social Media

Search Engine Marketing

Anthony Kim, MDAssistant Professor of Neurology and is Medical Director of the UCSF Stroke Center

“We were surprised to see that tens of thousands of people were regularly ‘asking’ a search engine about stroke-related symptoms in many cases shortly after the onset of symptoms.

In fact, every month, about 100 people were finding our study website by entering the query: “Am I having a stroke?” directly into their Google search box.”

Perspective

http://digitalmediaandscience.wordpress.com/2012/10/31/am-i-having-a-stroke-connecting-with-patients-in-new-ways-as-they-search-for-health-information-online/

Recruiting Patients Online


Digital Information about Clinical Studies: Checklist

The creator of digital/social media content is responsible for it.

Abide by institution’s media guidelines.

Ensure that the study sponsor is informed of your digital/social media activity.

Refrain from providing significant details of any clinical study – focus on basic study information. Suggestion: Link digital media content to study page with more information

Beware of proprietary information.

[Ref. 13]

[Ref. 13]

Avoid making claims of treatment efficacy or side effects. Use disclaimers to reduce risk.

Avoid disclosure of preliminary results or non-public information.

Bloggers involved in the study should not write about trial or drug, device, or treatment (could be viewed as advertising).

Avoid using social media for eligibility screening, refer to institution and study team.

Digital Information about Clinical Studies: Checklist

Evaluation Example Messages

You want to promote a study that focuses on the drug nivolumab to see whether it may help to prevent relapsing in patients with acute myeloid leukemia in remission after chemotherapy. Relapse remains the main failure of treatment in patients with acute leukemia after chemotherapy. Nivolumab has already shown impressive immune therapy results in patients with melanoma, kidney cancer, and non-small-cell lung cancer. You are trying to enroll men and women 18+.

• Trial length is 2 years. • Number of visits: 1 every 2 weeks• Procedures: Blood counts, bone marrow exam, toxicity test• Compensation: $150• Medical cost coverage: Drug at no cost; standard follow-up insurance

Breakout SessionWould you use any of these Twitter messages?

#1#2#3

Evaluate Example 1Would you use this Facebook message?

Promoting Clinical Research Digitally

Social Media and Search Engines

Organic Advertising (Paid)

Twitter Yes No

Facebook Yes Yes (Approval required)

Youtube Yes Yes (Approval required)

Pinterest Yes No

Instagram Yes Yes (Approval required)

Google Search Yes Yes (Approval required)

Limited overview

Based on platform posting guidelines, July 2016

[Ref. 13]

State new treatment, drug, device as investigational/in testing.

Avoid coercion, the practice of persuading someone to do something by using force or threats.

Don’t imply favorable outcomes or post claims regarding safety, e.g., better treatment, better chances to be cured, safe treatment.

Don’t promise free medical treatment.

Don’t emphasize payment for participants, e.g., participants may be compensated for their time

Digital Recruitment Messages ChecklistFDA and IRB Guidelines Apply to Digital Messages

Today’s Focus


Laws and Regulations

Like all research involving humans, federal and state laws govern social media recruitment activity.

In addition to Common Rule, FDA regulations, HIPAA and HITECH may apply.

What IRB Needs to Know

Examples of social media content for IRB review:

Layout mockup of the web page, including text and any links provided to the potential participants

Text of Google Search ad and a static view of the page to which the ad will direct traffic

Text of Facebook post or ad and any images and links that are included

If the social media content is visible to potential study participants, you should assume it will need IRB approval.

Let IRB know that your social media recruitment strategy and materials will comply with existing IRB and applicable FDA regulations related to human subject research. This means adherence to 21 CFR §56 as explained in the FDA’s longstanding document titled, “Recruiting Study Subjects – Information Sheet, Guidance for Institutional Review Boards and Clinical Investigators”.

Protection Against HIPAA Violations and Inappropriate Posting

1. Pay attention to Protected health information (PHI)

2. Draft response messages to manage comments that include PHI, include them in your IRB protocol for review

Examples:

On Twitter: Dear [@mention]: To protect your privacy, we suggest you delete your message. Please contact us directly URL/or phone number

On Facebook: Dear [FIRST NAME]: Thank you for your interest in our clinical study at Keck Medicine of USC. To ensure the privacy and confidentiality of [your or your family member’s] health information, we had to delete your comment. To help answer your question, please contact us directly via [email], text or phone [PHONE NUMBER]. We’d be happy to give you a call.

Managing Active Study Participants Help them understand that sharing details about their

participation online can …

distort the results of the study and essentially cause the trial to fail,

influence how other people perceive or report their own symptoms, making it hard to tell whether a given drug or treatment is working,

unblind the study, i.e., if neither the participants nor the clinical trial site team knows who is on an active drug or a placebo, some participants may be taking a placebo. Information you share could lead them to report symptoms that they are not actually experiencing, and

be misinterpreted by the public, journalists and others.

TIPS FOR GETTING IT RIGHT Do: Do discuss your experience confidentially with your family and other people

who are close to you. Do talk with your family doctor and other healthcare providers. It’s important

to let them know that you are in a clinical trial. Do ask your clinical trial team to provide guidance about where to obtain

reliable educational material online. Do keep a journal or take notes on your cell phone so you can make a list of

things to talk about with your clinical trial doctor and study team at your clinical trial.

Don’t: Don’t talk publicly, including online, about your participation in a clinical trial. Don’t post about your experience in the trial, including about side effects or

about how you think the drug is working. Don’t solicit trial advice or information from online friends or people other

than the clinical coordinator or primary investigator at your clinical trial site. Don’t respond to questions or comments online related to the trial you’re

involved in. If you do see trial posts online, please tell MDF or your trial site. Don’t share or take anonymous advice from “experts” online. The need for confidentiality during clinical trials is a critical issue for our

community. Help spread the word by posting these tips on Facebook and elsewhere. If you see misinformation in online forums, groups or group discussions, point people to verified, accurate information provided in places such as MDF's Study & Trial Resource Center.

Thank you! You are helping change the face and future of this disease. You are an essential part of Care and a Cure for DM

- See more at: http://myotonic.org/careful-social-media-can-undermine-clinical-trials#sthash.0H3t4k2e.dpuf

Template Language (Part 1)

Do discuss your experience confidentially with your family and other people who are close to you.

Do talk with your family doctor and other healthcare providers. It’s important to let them know that you are in a clinical trial.

Do ask your clinical trial team to provide guidance about where to obtain reliable educational material online.

Do keep a journal or take notes on your cell phone so you can make a list of things to talk about with your clinical trial doctor and study team at your clinical trial.

Template Language (Part 2)

Don’t talk publicly, including online, about your participation in a clinical trial.

Don’t post online including on social media about your experience in the trial, including about side effects or about how you think the drug is working.

Don’t solicit trial advice or information from online friends or people other than the primary investigator and study team at your clinical trial site.

Don’t respond to questions or comments online related to the trial you’re involved in.

If you do see study-related posts online, please tell the study team.

Understanding Social Media Citations

http://www.apastyle.org/products/4210512.aspx



Google+



Twitter, Individual Author

Today’s Focus


Tracking Key Performance Indicators

Examples:Retweets/RepinsSharesReplies/commentsLikes

Social media analytics; GoogleAdwords

Initiation of Contact with Study Team

Social Media Engagement

Link Engagement

Website Engagement

Impressions

Clicks Examples:UsersSessionsTime spent on pagePageviewsExits

Social mediabuilt-in analytics, e.g., Twitter, Facebook, Pinterest; Google Adwords

Social media analytics; Google Adwords; Buffer; Hootsuite; Tweetdeck; Kuku.io; Link shortening services, e.g., Ow.ly

M E A S U R E M E N T T O O L S

Google Analytics; Piwik

Google Analytics; Piwik

Altmetrics (Article Level Metrics)

Citations

Usage: Downloads, Views

Social Media Mentions, Shares, Likes, Comments, Links, Clicks, etc.

Referring data and knowledge bases

Tools that Calculate Altmetrics

ImpactStory

Altmetric.com

Plum Analytics

CitedIn

ImpactStory: Example of a Tracking Tool

Plum Analytics Profile: Antony Williams

Courtesy of PlumAnalytics

Social Media Reach by Topic Areas

Courtesy of PlumAnalytics

Funders Start Showing Interest in Alternative Metrics

http://eprints.icrisat.ac.in/12069/1/value-all-research-products.pdf

Autism Speaks Tracks Research Impact

http://www.ebscohost.com/newsroom/stories/autism-speaks-to-use-plumx-to-track-research-impact

Using Altmetrics in Applications for Promotion Review by Researchers

Steve Pettifer, PhDComputer scientistUniversity of Manchester, UKTwitter: @srp

“[My mentor] took a look and said, ‘What the hell are these badges doing in your CV?’ But once I explained them, he said, 'Well, give it a go.’ It hit the right note at the right time. I'm definitely a convert.”

Pettifer added the number of views and public engagement (e.g., social media mentions) to the CV entry. He got his promotion. He does not know for sure whether the metrics helped, but he plans to use them on future grant applications. http://www.nature.com/naturejobs/science/articles/10.1038/nj7463-491a

Today’s Focus


Online Reputation Management for Physician-Scientists1. Pay attention to physician rating and review websites

(Note: The Centers for Medicaid and Medicare Services (CMS) maintain their own Hospital Consumer Assessment of Healthcare Providers and Systems)

Yelp.comHealthGrades.comVitals.comRateMD.comYellowBook.comLinkedIn.comManta.comMerchantCircle.comGoogle+LocalZocDoc.comRealSelf.comInsiderPages.comSuperDoctors.com

Citysearch.comYahooMaps.comAngiesList.comBing.comRealSelf.comUCompareHealthCare.comYellowBot.comYahooLocal.comAvvo.comEveryDayHealth.comWellness.com

Examples; last updated Nov 11, 2016



2. Monitor online content that mentions your name and medical practice (automation saves time)

F R E E F E E A P P L I E S

Google AlertsSocialMentionHootsuiteTweetdeck

Trackur Reputology Review TrackersReview PushChatmeterReputation RangerReview ConciergeReputation HealthReputation.comSocialDraft

Examples; last updated Nov 11, 2016



2. Monitor online content that mentions your name and medical practice

3. Improve your online reputation, e.g., encourage patients to share their positive experiences online via social media, a monthly newsletter, or a blog. (Note: Asking patients to sign a GAG order is not recommended if you want to improve your online reputation.)



2. Monitor online content that mentions your name and medical practice

3. Improve your online reputation, e.g., encourage patients to share their positive experiences online via social media, a monthly newsletter, or a blog. Or, use a third-party service to monitor and manage your reputation, e.g., Iron Comet, .

4. Don't ignore positive or negative feedback online, e.g., make the effort to contact the patient personally to discuss it and encourage them to update their feedback if it is negative. Or, use a third-party service to monitor and manage your reputation, e.g., Iron Comet, Reputation.com.

When Responding to Online Comments, Remember to Follow HIPAA Guidelines

1. Don’t share the patient’s physical or mental health information that could potentially identify him/her.

2. Respond in generalizations, such as “We strive to deliver quality care to all patients.”

3. Never use patient names in a response, even if they identify themselves in the comment.

4. Take the conversation offline by asking patients to call your office if you need to discuss the review further.

Example Responses: Positive Reviews1. Thank you for the positive feedback! We appreciate the support.

2. We strive to provide the highest quality in patient care. Thank you so much for sharing this story with us!

3. Thank you for connecting with us about this experience with our staff. We will be sure to share this appreciation.

4. Thank you for giving us a great score! Our dedicated staff takes great pride in serving the <city name> community.

5. Thank you so much for taking the time to share these. Our staff will pass along the kind words!

6. Our practice aims to deliver the highest quality patient care. We love to hear about these positive Thanks for sharing this feedback with us!

Example Responses: Negative ReviewsWe are sorry to hear this and truly value your Patient experience is important to us at <practice name>, so we will make every effort to address any concerns you may have. Your comments have been shared with <contact at practice – position/first name >. If you would like to speak with someone about this experience, please call <position, phone number>.

We are sorry to hear about the long wait time at our practice. We will look into this and make every effort to improve our wait times in the future.

We are very sorry to hear about this experience in our practice and would like to look into it. Please call <contact at practice- position/first name> so that we can get further information to address the situation.

We are always sad to hear someone had trouble reaching our office. We want all of our patients to be able to communicate with our office easily, so we will re-examine our phone procedures.

Example Responses: Negative ReviewsWe sincerely apologize for any scheduling and billing issues experienced at our practice and value this feedback. We are dedicated to providing timely, patient- centered, quality care and regret that this was not the experience described. As we work to improve our processes, please don't hesitate to reach out to our office at <office phone number/PM direct line> to express your concerns.

Thank you for bringing this billing matter to our attention. We would appreciate the opportunity to discuss this matter further so the situation can be Please contact our staff at <### - ### - ####> at your convenience. Thank you.

Thank you for making us aware of this experience. We sincerely apologize for any inconvenience that was caused. Please reach out to <contact> at <phone number> so that we can help resolve this issue.

A C C E SS R E S O U R C E S

http://sc-ctsi.org/digital-scholar/

Thank you!Contact Information

Katja Reuter, PhDDirector of Digital Innovation and CommunicationSouthern California Clinical and Translational Science Institute (SC CTSI) University of Southern California

Email: [email protected]: @dmsciBlog: https://digitalmediaandscience.wordpress.com

engaging with patients online: the do’s and don’t’s, and what’s to gain

Education