Licensing One's Own Health Care Data

Paul Roemer at HealthcareITstrategies asked about the difference between a patient owning vs accessing their health care data.

To which I replied:

---

Paul, I'd like to see a model considered where the patient owns the data, and licenses it out to others, such as doctors, hospitals, and insurance companies. One could then imagine a situation where that data (including their genetic info), owned and licensed by the patient, might have a value. The patient could then do the following:

• be paid licensing fees for access to their data (from Google or other marketing companies; and from insurance companies and Pharma, who would benefit from knowing this info)
• grant access for free to their providers, spouse, etc
• pay others to access their data in order to gain some benefit, such as analytics

This would change the whole discussion about health care, privacy, and costs.

---

Think about the incredible shifts and changes in the marketplace if such a revolution developed.

Not only would there be this "power to the people" shift in mindset, it would also create a huge change in the average consumer's approach to their own health. It would encourage them to pay attention to their data, and thus their health, in a manner similar to how people pay attention to their savings and checking accounts. It might even result in a reduction in health care costs. It would certainly create a more fluid marketplace.

How do we get there? (add comments/ideas)

[Edit: Dec 13- I'm linking to some of the great prior posts and items noted by the commenters.]

• HealthBlawg: David Harlow's interview with law professor Marc Rodwin about idea of public ownership of de-identified health data. [Jul 2009]
• Marc Rodwin's JAMA article, "The Case for Public Ownership of Patient Data". [Jul 2009]
• Silona Bonewald's post about mutual data ownership. [Jun 2009]
• Leo Kish asks: What if all applications, caregivers and patients were connected online? [Nov 2009]
• Gregg Masters (@2healthguru) posts "I Will License or Lease My Health Info to Providers". [Mar 2009]
• Steve Holcombe's piece on granular information ownership. [Aug 2008]

Links to HIT and MU Resources

Please add a comment for other links that should be included. Thanks.

Upcoming meetings & public comment . . .

FDA Hearing on Social Media	Nov 12-13	fdasm.com | Federal Register notice (PUBLIC COMMENTS thru Feb 28) | FDA Notice | AGENDA | Speakers | Panelists | transcript of 1996 mtg re internet
HIT Standards Comm	Thu Oct 29	Public testimony to better understand adoption and implementation issues, needs for enhanced implementation guidance, and identification of enablers that would accelerate interoperability such as new tools or filing standards gaps. We'll also conduct an online forum and accept written testimony. [per John Halamka]
HIT Policy Comm	Oct 27-28	MU relevance to Specialty providers (incl Psychiatry & Behavioral Health), small practices, and small hospitals. | Agenda | Webcast | Oct 27 transcript

• ARRA - HITECH Act | W&M summary | statute
• Meaningful Use page (HHS)
• Meaningful Use matrix (pdf)
• Meaningful Use documents (HHS)
• Summary of comments from non-physician providers and specialist physicians from June 2009 meeting (pdf)

• HIT Policy Committee | meetings | past mtgs | recommendations
• HIT Standards Committee | meetings | past mtgs | recommendations
• HITSP
• CCHIT
• Ed Bennett's Hospital Social Media list (list of hospitals and their official blogs, Twitter names, and Facebook pages)

Twitter links . . .

• #fdasm: FDA hearing on social media and web2.0 (Nov 12-13)
• #hcsm: Health Care & Social Media chat, Sunday nights 9-10 ET
• @ahier: Brian often is the first to post transcripts of the public meetings on his blog
• #hitpol: Tweets related to HIT policy issues
• #ehr: EHR-related tweets
• #hchit: Health care HIT chat, Thursdays 1-2pm ET

HITPC Recommends Changes to HIT Certification Process: 10 Bullet Points

The recommendations from the HITPC Certification & Adoption workgroup came out yesterday (see below).

Here are my ten take-home bullet points:

1. Certification should be solely focused on Meaningful Use, Privacy, Security, & Interoperability. Nothing extra.
2. The setting of criteria and testing of criteria satisfaction should be done by separate entities.
3. HHS establishes the certification criteria (not CCHIT).
4. NIST should oversee the testing to determine if products or orgs meet the criteria.
5. NIST can accredit orgs, such as CCHIT, to conduct the certification process.
6. Certification is required every 4 years (this seems too long?).
7. Slide 17 suggests a surveillance function, which might fill the 4-year gap with periodic monitoring, perhaps.
8. Open source is clearly accommodated.
9. CCHIT should keep doing what it is doing until further notice.
10. "Criteria on functions/features should be high level; however, criteria on interoperability should be more explicit." (Slide 15)

If ONC and HHS agree with all of this, after public comment, then CCHIT will likely become more of a testing org, rather than a standards-setting body.

This is a huge step forward in clarifying and advancing our national HIT undertaking. The Workgroup should be congratulated for this set of recommendations.

HITPC Recommends Changes to HIT Certification Process

View more presentations from sdaviss.

Lyrics: Beautiful Dreamer = Meaningful User

A couple weeks ago I had the idea that the song "Beautiful Dreamer" had the same number of syllables as "Meaningful User," so started to rewrite the lyrics appropriately (I love doing stuff like that). But I guess my creative spark fizzled and only got the first verse done.

Here are the original lyrics:

Beautiful dreamer, wake unto me,

Starlight and dewdrops are waiting for thee;

Sounds of the rude world, heard in the day,

Lull'd by the moonlight have all pass'd away!

Beautiful dreamer, queen of my song,

List while I woo thee with soft melody;

Gone are the cares of life's busy throng,

Beautiful dreamer, awake unto me!

Beautiful dreamer, awake unto me!

Beautiful dreamer, out on the sea

Mermaids are chanting the wild lorelie;

Over the streamlet vapors are borne,

Waiting to fade at the bright coming morn.

Beautiful dreamer, beam on my heart,

E'en as the morn on the streamlet and sea;

Then will all clouds of sorrow depart,

Beautiful dreamer, awake unto me!

Beautiful dreamer, awake unto me!

Here's what I came up with so far...

Meaningful user, wake unto me,

Certifications are waiting for thee;

Sounds of our health care, falling away,

Lull'd by C-C-H-I-T saving the day!

Meaningful user, no one defines,

Stimulus money for healthcare IT;

Will it prevent us from losing our minds?

Meaningful user, awake unto me!

Meaningful user, awake unto me!

Please have a go at finishing it up in the comments. Thanks.

Meaningful Use: Official Draft Definition Released by HITSP

The anticipated release of the draft definition of "meaningful use" (mentioned in ARRA but not defined) was released by the HITPC (Health IT Policy Committee) today.  There is a public comment period ending June 26 (max 1000 characters).  All public comments should be sent to MeaningfulUse@hhs.gov.  The anouncement is on the HHS website.

The preamble describes the framework, while the matrix lays out the five policy priority areas and the target measures for each 2-year block (2011, 2013, 2015).  The 5 areas are:

• Improve quality, safety, efficiency, & reduce disparities

  
• Engage patients & families
  
• Improve care coordination

  
• Improve population & public health

  
• Ensure privacy & security protections

  

Each area has associated Care Goals (eg, use evidence-based order sets and CPOE; provide transparency of data-sharing to patient), along with Objectives and Measures for each of the three 2-year blocks.  Check out the Matrix for details (alternatively, just follow the white rabbit).

So, for example, under Improve Care Coordination, we have the following:

---

Care Goal
Exchange meaningful clinical information among professional health care team

2011 Objectives 

(Goal is to electronically capture in coded format and to report health information and to use that information to track key clinical conditions)

• Exchange key clinical information among providers of care (e.g., problems, medications, allergies, test results) [OP, IP]
  
• Perform medication reconciliation at relevant encounters [OP, IP]
  

2011 Measures

• Report 30-day readmission rate [IP]
  
• % of encounters where med reconciliation was performed [OP, IP]
  
• Implemented ability to exchange health information with external clinical entity (specifically labs, care summary and medication lists) [OP, IP]
  
• % of transitions in care for which summary care record is shared (e.g., electronic, paper, eFax) [OP, IP] 
  

2013 Objectives 

(Goal is to guide and support care processes and care coordination) 

• Retrieve and act on electronic prescription fill data [OP, IP]
  
• Produce and share an electronic summary care record for every transition in care (place of service, consults, discharge) [OP, IP]
  
• Perform medication reconciliation at each transition of care from one health care setting to another [OP, IP]
  

2013 Measures

• Additional public reports using NQF-endorsed HIT-enabled quality measures [OP, IP]
  
• % of transitions where med reconciliation was performed [OP, IP]
  
• % of encounters where fill data accessed [OP]
  
• % of encounters where clinical information is shared with external clinical entities [OP, IP]
  

2015 Objectives 

(Goal is to achieve and improve performance and support care processes and on key health system outcomes) 

• Access comprehensive patient data from all available sources
  

2015 Measures

• Aggregated clinical summaries from multiple sources available to authorized users [OP, IP]
  
• NQF-endorsed Care Coordination Measures (TBD)
  

---

There was a lot of discussion about moving some of the more distant objectives up sooner.  This part of the discussion (before the lunch break) was tabled, and a plan to release a revised draft was described.  

There was also quite a bit of Twitter discussion as well (see search.twitter).

If you'd like to read the transcript of the conference call, check out Brian Ahier's blog.

#hcsm: Jun 14: Legal Issues Around Use of Social Media in Health Care

Whew! This one was a doozy. Instead of the usual 4-5 topics, there were 900 (well, it felt like that).  This is my recap.  Note: These are just my own personal notes from the Sunday night #hcsm chats on Twitter. It's what I found interesting or memorable or wanted to be able to easily refer back to.

We were treated to two "guest" tweeters, both health attorneys.  From @healthsocmed :

-@danielg280 is Daniel Goldman

Dan is a graduate of UCLA and UVA law school, chair of Business Law group at Mayo Clinic and member of Mayo Clinic's brand management team. Practice in the areas of business law, copyright, trademark, telemedicine, privacy and internet.  Biggest claim to fame is legal counsel for Mayo Clinic's Social Media efforts headed by @Leeaase

-@healthblawg is David Harlow

David’s legal and consulting practice includes advising health care providers of all shapes and sizes on a variety of business and regulatory issues, including HIPAA compliance, patient communications and more. Please contact him if you require such services.  

Web http://www.harlowgroup.net 

Blog http://healthblawg.typepad.com

The Disclaimers

*No legal advice will be offered during this chat event*

"No legal advice" means the attorneys will not address specific use cases (e.g. "at my hospital, we have this social media problem, what is your advice")

The attorneys will engage on general issues, concerns and legal topics related to the use of social media in healthcare

The tweets: 

1. 
   healthblawg Biggest areas of concern ppl have re healthcare SoMe is HIPAA and privacy law. Right area to be concerned abt. #hcsm 15 Jun 2009 from TweetChat
2. 
   healthblawg Fed and state healthcare privacy laws interact and overlap; EU & other int'l law to think abt given global reach of www #hcsm 15 Jun 2009 from TweetChat
3. 
   healthblawg Under HIPAA, 'covered entity' can't release PHI to 3rd party w/o pt consent. #hcsm 15 Jun 2009 from TweetChat
4. 
   healthblawg Providers get consent up front by having pts sign notice of privacy practices (NPP); need to articulate planned use for PHI in NPP #hcsm 15 Jun 2009 from TweetChat
5. 
   healthblawg State law can be stricter than HIPAA (recent NV and MA general privacy laws, focused on protection against ID theft) #hcsm 15 Jun 2009 from TweetChat
6. 
   healthblawg Another area of concern: mandated reporting. St law often make providers mandated reporters of things like gunsht wnds, domestc violnc #hcsm 15 Jun 2009 from TweetChat
7. 
   healthblawg I mention mandated reporting laws as example of how receiving info via SoMe may trigger obligations beyond obligs to pt #hcsm 15 Jun 2009 from TweetChat
8. 
   healthblawg Mass. law, for example, applies to doc who is attending or treating pt w GSW http://bit.ly/qbHZz What does attending or treating mean? #hcsm 15 Jun 2009 from TweetChat
9. 
   healthblawg When docs offer medical advice via tweets or other SoMe I'd say they are 'treating' #hcsm 15 Jun 2009 from TweetChat
10. 
    healthblawg #hcsm But let's step back a mopment... IMHO, this is all a bit academic right now. The @susannahfox Pew/CHCF rpt, 'The Social LIfe of Health Information' released last week says only 6% of people want health info via SoMe http://bit.ly/lw72h Now, @edbennett says that will change, and I agree - change will come, and so we have the opportunity to plan, lay groundwork for these interactions, develop rules of the road for the future: like rewriting NPPs with SoMe in mind, for example.... Read More: http://is.gd/123pv 15 Jun 2009 from Twitlonger

-- this quote was brought to you by quoteurl

1. 
   danielg280 Gd evning. Jst a remndr that I’m a civilian tonight. My opnions r my own, not my employer's. Also, this is gen'l info, not legal advc #hcsm 15 Jun 2009 from TweetChat
2. 
   danielg280 Laws to be aware of: State licensure laws for docs and nurses: Center for telehealth and ehealth law: http://tinyurl.com/mqwsfn #hcsm 15 Jun 2009 from TweetChat
3. 
   danielg280 Copyright law and fair use: Stanford Libraries C page: http://tinyurl.com/374b4 Disney C parody http://tinyurl.com/2mvjg2 #hcsm 15 Jun 2009 from TweetChat
4. 
   danielg280 Defamation: Electronic Frontier Foundation Blogger’s legal guide: http://tinyurl.com/ah8rr9 #hcsm 15 Jun 2009 from TweetChat
5. 
   danielg280 Trademark law: INTA trademark basics: http://tinyurl.com/bakgxb #hcsm 15 Jun 2009 from TweetChat
6. 
   danielg280 Most medical practice acts are broad and cover any attempts to heal or diagnose, whatever the means #hcsm 15 Jun 2009 from TweetChat
7. 
   danielg280 T 3.1, Generally this is fine, so long as its voluntary and the patient signs a hipaa compiant auth #hcsm 15 Jun 2009 from TweetChat
8. 
   danielg280 Key is to make sure patient really understands what they're getting into. Don't want to have them surprised they're on network tv #hcsm 15 Jun 2009 from TweetChat
9. 
   danielg280 Generally claims of "best" are puffing, and ok to say without support. #hcsm 15 Jun 2009 from TweetChat
10. 
    danielg280 May not need an auth if only allowing a forum for them to do it. May need an auth of directly soliciting #hcsm 15 Jun 2009 from TweetChat

-- this quote was brought to you by quoteurl

---

NOTE: These tweets are not necessarily in order. QuoteURL is not consistent about that.

1. 
   stephaniethum @healthblawg Does that mean language in NPP practices documents need to change to include SM references as a "planned" use? #hcsm 15 Jun 2009 from TweetChat in reply to healthblawg
2. 
   dr_bob @healthblawg yes have to be careful about creating an online doctor-patient relationship #hcsm 15 Jun 2009 from TweetChat
3. 
   drval @healthblawg But what constitutes medical advice? A direct suggestion to a specific person to change mgmt or DO something? #hcsm 15 Jun 2009 from web
4. 
   ctsinclair @healthblawg What is the difference between medical advice and education about medical topics? Are there cases debating this? #hcsm 15 Jun 2009 from TweetChat
5. 
   ShrinkRapRoy "advice"...it's all in what you say & how you say it. Need to speak in generalities and veer away from specific case.
   #hcsm 15 Jun 2009 from TweetChat
6. 
   craigstoltz "Advice" easy to spot/disclaim in "long" form online media. In a Tweet, hard to draw line between [actionable] advice & benign info #hcsm 15 Jun 2009 from TweetDeck
7. 
   healthblawg @drval Sounds about right; so need to est MD-pt rel 1st IRL #hcsm 15 Jun 2009 from TweetChat in reply to drval
8. 
   dr_bob @ctsinclair education is general, treatment is specific to the patient #hcsm 15 Jun 2009 from TweetChat
9. 
   ctsinclair @dr_bob Yes but any education may be considered specific from the pt point of view and therefore become advice 15 Jun 2009 from twhirl in reply to dr_bob
10. 
    healthblawg @stephaniethum Yes I think NPP's need to be updated to reflect SOMe use #hcsm 15 Jun 2009 from TweetDeck in reply to stephaniethum

-- this quote was brought to you by quoteurl

Fact or Myth

T1.1 Fact or Myth: Patients can disclose PHI, evaluate docs, payers, providers anywhere/anytime using social media. Providers not in control.

1. 
   candacee116 Everyone owns their own story. If they wish to share on a soc/med site-they are giving permission
   #hcsm 15 Jun 2009 from TweetChat
2. 
   ctsinclair T1.1 I vote Fact. RE: Patients can disclose PHI, evaluate docs, payers, providers anywhere/anytime using social media. #hcsm 15 Jun 2009 from TweetChat
3. 
   healthblawg T1.1 Pt can disclose own info; if provider sponsored forum important to have notice re lack of privacy #hcsm 15 Jun 2009 from TweetChat
4. 
   patrickmann How can a doc truly a patient is who they say they are over SM? #hcsm 15 Jun 2009 from TweetChat
5. 
   chrisboyer Re: T1 - i would like to agree with @ctsinclair - I would like for this to be ffact. #hcsm 15 Jun 2009 from TweetDeck
6. 
   danielg280 1.1 Fact Patient controls own PHI and can disclose.Can also say what they want re docs, subj to limits of libel Must be opinion or tru #hcsm 15 Jun 2009 from TweetChat
7. 
   dr_bob @patrickmann on SM nobody knows if you're a dog #hcsm 15 Jun 2009 from TweetChat
8. 
   ahier anyone have real-life examples of pt testimonials on hospital blogs? #hcsm 15 Jun 2009 from TweetDeck
9. 
   StevenBarley @irb123 For example: http://bit.ly/MRd89
   #hcsm 15 Jun 2009 from TweetChat in reply to irb123
10. 
    chrisboyer @MarksPhone I believe a patient can comment wherever they want, whenever they want on SM. That's they're right. #hcsm 15 Jun 2009 from TweetDeck in reply to MarksPhone

-- this quote was brought to you by quoteurl

T1.2 Fact or Myth: Providers should never follow, friend or reply to patients via social media, HIPAA absolutely forbids this.

1. 
   ShrinkRapRoy RT @patrickmann How can a doc truly a patient is who they say they are over SM? [good point]
   #hcsm 15 Jun 2009 from TweetChat in reply to patrickmann
2. 
   danielg280 Spoofing is a concern on SM, which is why it's generally not a good idea for true treatment relationship without a way to validate id #hcsm 15 Jun 2009 from TweetChat
3. 
   nickdawsonhc do patients have an expectation that they will be treated via SM? #hcsm 15 Jun 2009 from TweetChat
4. 
   candacee116 Ithink you should not create a relationship separate from provider/patient on soc media such as FB or MS but reply on email to patient #hcsm 15 Jun 2009 from TweetChat
5. 
   healthblawg T1.2 Best practice: advance consent; online or paper, should be part of std HIPAA NPP (notice of privacy practices) #hcsm 15 Jun 2009 from TweetChat
6. 
   danielg280 Close to fact: Prvdr mst be mindful of pvcy obligations and HIPAA in all interactions. Evn Disclosing that someone is a pt is a prob #hcsm 15 Jun 2009 from TweetChat
7. 
   nickdawsonhc I think most PTs understand that SM is like a cocktail party. Ask general questions, not seeking treatment. seems a moot point to me #hcsm 15 Jun 2009 from TweetChat
8. 
   candacee116 If they are in rural area, this may be only means of health info communication-they may need Dr to friend them to establish connection #hcsm 15 Jun 2009 from TweetChat
9. 
   macobgyn How is a patient asking me questions after hours via SM any different than the pt calling me through the office paging system?
   #hcsm 15 Jun 2009 from TweetChat
10. 
    ekivemark #hcsm Seems like we need an "I opt out of HIPAA" just like we have a "Do Not Call" Registry 15 Jun 2009 from TweetDeck

-- this quote was brought to you by quoteurl

T1.3 Fact or Myth: Employees have no right to use social media "on company time" for personal matters. Blocking access is ok.

T1.4 Fact or Myth: Employers cannot regulate employee speech-employees can use personal PCs/phones, networks & *personal* social media accts

1. 
   danielg280 t1.3 true No employee "rights" to do this. Employers can limit or allow as they see fit. dsnt mean it's a good idea #hcsm 15 Jun 2009 from TweetChat
2. 
   candacee116 Employees deserve breaks can't they go on then? #hcsm 15 Jun 2009 from TweetChat
3. 
   macobgyn RT @GraftFinder: I think we should start by referring to SM as "Communication" not "media" it portrays the wrong picture. #hcsm 15 Jun 2009 from TweetDeck
4. 
   healthblawg T1.3 Agree w Dan. However: employee morale issue, and need to enlist employees as SoMe ambassadors now or later so why piss them off? #hcsm 15 Jun 2009 from TweetChat
5. 
   ekivemark #hcsm T1.3 Employee personal use - If employers want to go there then they should accept not being able to contact off duty employees 15 Jun 2009 from TweetDeck
6. 
   Aurora_Health @healthblawg employees as ambassadors has great value if directed w/in appr. guidelines #hcsm 15 Jun 2009 from Seesmic Desktop
7. 
   ShrinkRapRoy T1.3 Agree, no RIGHT to use SM for personal use. But are what we doing here "personal" or "work-related"? Both? #hcsm 15 Jun 2009 from TweetChat
8. 
   craigstoltz Re: Employee use of SM: Employers originally banned telephones for same reason, that they would kill productivity. Ditto web. Now SM. #hcsm 15 Jun 2009 from TweetDeck
9. 
   bacigalupe @shrinkraproy @HealthSocMed are you making a distinction between exempt and non-exempt employees? Big difference #hcsm 15 Jun 2009 from web in reply to ShrinkRapRoy
10. 
    ShrinkRapRoy @bacigalupe Great point! As an exempt employee, when am I ever really "off"?
    #hcsm 15 Jun 2009 from TweetChat in reply to bacigalupe

-- this quote was brought to you by quoteurl

T1.5 Fact or Myth: Social media content published by employees on work or personal accounts is automatically the property of the employer

1. 
   danielg280 Myth mostly but emplyers own stuff created "w/in the scope of emplymnt" #hcsm 15 Jun 2009 from TweetChat
2. 
   patrickmann Big concern for corps is info leaking out through SM. Company is liable for employee actions. #hcsm 15 Jun 2009 from TweetChat
3. 
   danielg280 thus, If it's your job to do it, could be owned by employer, even if personal acct or equipment. #hcsm 15 Jun 2009 from TweetChat
4. 
   healthblawg T1.5 Classic work for hire rule; not unique to SoMe - Matter for contractual negotiation #hcsm 15 Jun 2009 from TweetChat

-- this quote was brought to you by quoteurl

---

2. Back to Law School Basics

T2.1 Are social media tools like Twitter, FcBk, YTb redefining what constitutes intellectual property?

1. 
   ekivemark #hcsm Put the patient at the center -They choose/own/control/delegate - seems like it simplifies a lot of complexities in HC. 15 Jun 2009 from TweetDeck
2. 
   danielg280 t2.1 Prob not. File sharing was bigr challenge and hasnt caused sea change yet #hcsm 15 Jun 2009 from TweetChat
3. 
   ctsinclair T2.1 Oh yes. Check out some legal blogs for great posts on "Who owns your LinkedIn contacts?"
   #hcsm 15 Jun 2009 from TweetChat
4. 
   crgonzalez T2.1>> That's where I think your Terms of Use can help guide employees #hcsm 15 Jun 2009 from TweetChat
5. 
   healthblawg T2.1 Old rules like "fair use" might not seem as fair when the "use" is so instant and widely disseminated; law always plays catch-up #hcsm 15 Jun 2009 from TweetChat
6. 
   nickdawsonhc Great point--> @sarahzaenger T1.5 Myth. no one can 'own' social media-- it's just out there #hcsm 15 Jun 2009 from TweetChat

-- this quote was brought to you by quoteurl

T2.2 Can you copyright a "Tweet" or a "Wall Post" in Facebook? - http://www.canyoucopyrightatweet.com/

1. 
   danielg280 t2.2 Prob too short to be copyrightable, plus (don't shoot me) not enough creativity per copyright law. #hcsm 15 Jun 2009 from TweetChat
2. 
   jensmccabe @HealthSocMed #hcsm - can't copyright tweet yet. For IP, suggest this method: 1. creative commons info in profile, blog, facebook. 2. record 15 Jun 2009 from web in reply to HealthSocMed
3. 
   healthblawg #hcsm T2.2 Twitter TOS says Twitter asserts no claim of copyright, belongs to ac... Read More: http://is.gd/124jz 15 Jun 2009 from Twitlonger
4. 
   danielg280 The rare tweet that's pure creativity could be (eg haiku), most are not. Good article: http://www.canyoucopyrightatweet.com/ #hcsm 15 Jun 2009 from TweetChat
5. 
   HealthSocMed @healthblawg and @danielg280 - Can I put a "c" with a circle next to my Tweets or Wall Posts? #hcsm (TS) 15 Jun 2009 from Tweetie
6. 
   consultdoc RT@chrisboyer @drval This type of conversation would work great in Google Wave...#hcsm #hcsm 15 Jun 2009 from TweetChat
7. 
   crgonzalez T2.2 Under the Commons, and even under Twitter's rules, a tweet belongs to the owner and can be RT'd w/ author's consent #hcsm 15 Jun 2009 from TweetChat
8. 
   danielg280 @HealthSocMed You can put the circle C, but it won't affect whether you actually have a copyright #hcsm 15 Jun 2009 from TweetChat in reply to HealthSocMed
9. 
   danielg280 Actually, you can't own ideas unless it's patentable (which is a very high standard) copr. protects only creative xpression, not ideas #hcsm 15 Jun 2009 from TweetChat

-- this quote was brought to you by quoteurl

---

3. Best Practices

T3.1 What are the issues with *encouraging* or soliciting patient testimonials on a hospital branded social media account?

1. 
   ctsinclair T#: Had potential client worried about employees or patients saying" Dr. Smith is the BEST doctor!" #hcsm 15 Jun 2009 from TweetChat
2. 
   danielg280 T 3.1, Generally this is fine, so long as its voluntary and the patient signs a hipaa compiant auth #hcsm 15 Jun 2009 from TweetChat
3. 
   danielg280 Key is to make sure patient really understands what they're getting into. Don't want to have them surprised they're on network tv #hcsm 15 Jun 2009 from TweetChat
4. 
   chrisboyer Re T3: why would HC providers attempt to encourage patients to participate on SM accounts? That's against what SM is all about! #hcsm 15 Jun 2009 from TweetDeck
5. 
   danielg280 Generally claims of "best" are puffing, and ok to say without support. #hcsm 15 Jun 2009 from TweetChat
6. 
   healthblawg 3.1 Has to be voluntary, authzn needed too #hcsm 15 Jun 2009 from TweetChat
7. 
   stephaniethum @danielg280 So voluntary, unsolicited online pt testimonials are ok, but only if the person offering the testimonial signed a release? #hcsm 15 Jun 2009 from TweetChat in reply to danielg280
8. 
   danielg280 May not need an auth if only allowing a forum for them to do it. May need an auth of directly soliciting #hcsm 15 Jun 2009 from TweetChat
9. 
   EdBennett So it's OK if patient shares happy story on any other blog, but if they post to the hosiptal blog they need a signed release? #hcsm 15 Jun 2009 from TweetChat

-- this quote was brought to you by quoteurl

T3.2 Any special issues when a hospital doc tweets vs. hospital employee who is not a doc? Personal vs. corp branded Twitter acct matter?

1. 
   consultdoc I have officially reached information saturation. I will enjoy reading the summary later. #hcsm 15 Jun 2009 from TweetChat
2. 
   ekivemark @mkmackey #hcsm Cos have rules for communicating in co name.Most can be applied to SM as just another channel. Not sure more rules needed 15 Jun 2009 from TweetDeck in reply to mkmackey
3. 
   EdBennett @jensmccabe "control" social media? That just makes me laugh. Only the old and clueless think that way. #hcsm 15 Jun 2009 from TweetChat in reply to jensmccabe
4. 
   healthblawg #hcsm T3.2 Clinical communications not OK unless between clinician and establish... Read More: http://is.gd/124F6 15 Jun 2009 from Twitlonger
5. 
   danielg280 t3.2 Docs and nurses generally can't practice med across state lines. Need to be esp. careful to not cross into pract med. #hcsm 15 Jun 2009 from TweetChat
6. 
   coachkiki @HealthSocMed Perhaps personal accounts vs. work accounts - many gov. employees tweeting have "this is not work" or something on acct. #hcsm 15 Jun 2009 from TweetChat in reply to HealthSocMed
7. 
   ahier RT @chukwumaonyeije: @drval @Dr_Bob #hcsm Yes. This would be great on BlogTalkRadio @2healthguru 15 Jun 2009 from TweetDeck
8. 
   craigstoltz RT @HITshrink: Hmm, I haven't seen any ads: "Has this happened to you? Ur doc twittered ur surgery w/o consent?" 1-800-LAWYERS. #hcsm 15 Jun 2009 from TweetDeck
9. 
   donshep @danielg280 That an interesting one T3.2 if a provider in MA recommends something to a "follower" in CA is that prohibited #hcsm 15 Jun 2009 from TweetChat in reply to danielg280
10. 
    crgonzalez T3.2 There's the public expectation that what a doctor says can be construde as a medical opinion; not so with non-doc employee #hcsm 15 Jun 2009 from TweetChat

-- this quote was brought to you by quoteurl

T3.3 What are the rational boundaries for allowing posting of negative comments on hospital social media account? What's OK to approve, what's not? T3.3-1 Any legal scenario where blocking a negative comment would not be the best course of action?

1. 
   healthblawg #hcsm T3.3 To me, less legal, more intestinal fortitude issue. In this case (ne... Read More: http://is.gd/124U2 15 Jun 2009 from Twitlonger
2. 
   HealthSocMed @danielg280 and @healtblawg T3.3 What abt those pesky negative comments in social media toward providers, practitioners, payers? #hcsm (TS) 15 Jun 2009 from Tweetie
3. 
   jensmccabe @HealthSocMed Allowing posting of critical comments required for improvement. Abusive/trolling take yer pick of best practice TOS. #hcsm 15 Jun 2009 from web in reply to HealthSocMed
4. 
   danielg280 @HealthSocMed If from non-patient, can pursue for libel if untrue. If patient, Hipaa ties your hands in public forum #hcsm 15 Jun 2009 from TweetChat in reply to HealthSocMed
5. 
   donshep T3.3 Negative comments are a way of life whether waiting room bitching or on SM not much different #hcsm 15 Jun 2009 from TweetChat
6. 
   healthblawg T3.3 http://www.medicaljustice.com/ tries to get pts to agree in advance not to post negative rvws; I think that's inappropriate #hcsm 15 Jun 2009 from TweetChat
7. 
   nickdawsonhc @danielg280 hands tied how? Can you respond Bank Of America style "can't answer here, but here is my number, call me... ?
   #hcsm 15 Jun 2009 from TweetChat in reply to danielg280
8. 
   donshep T3.3 Lawyers are dealing with the same issue aren't they negative comments in SM?
   #hcsm 15 Jun 2009 from TweetChat
9. 
   gocatallina What if patients want to videotape their entire hospital experience and put it on YouTube? What are there boundaries? #hcsm 15 Jun 2009 from web
10. 
    ctsinclair @donshep Have been following legal sm circles but not seen much chatter about this. Lawyers have ethics guideline re: marketing self #hcsm 15 Jun 2009 from TweetChat in reply to donshep

-- this quote was brought to you by quoteurl

T3.4 What about targeted use of SocMedia tools by covered entities & employees toward specific racial, ethnic, gender communities offering treatment? T2.4-1 E.g. HIV/AIDS testing offers are very effective at dating web sites, esp when offer is made by a trusted member of community.

1. 
   candacee116 @HealthSocMed this might be the best way to reach some vulnerable groups we would not see/hear from otherwise #hcsm 15 Jun 2009 from TweetChat in reply to HealthSocMed
2. 
   ShrinkRapRoy My hosp is opening OB in Fall. An encouraging them to open up Tw/FB/Flickr. Those new moms wont like no access. #hcsm 15 Jun 2009 from TweetChat
3. 
   jensmccabe There are Twitter conventions we can try to 'activate' groups without personal identifiers. #getupandmove. #don'tsmoke #hcsm 15 Jun 2009 from web
4. 
   healthblawg #hcsm T3.4-1 HIV is a whole other story. Many/most states have pt privacy laws ... Read More: http://is.gd/12594 15 Jun 2009 from Twitlonger
5. 
   sarahskiba #hcsm What protects patients from hackers or stalkers posing as their health care professionals? 15 Jun 2009 from TweetDeck
6. 
   nickdawsonhc @shrinkraproy OB is our first/most interested service line as well #hcsm 15 Jun 2009 from TweetChat in reply to ShrinkRapRoy
7. 
   donshep T3.4 I know the hospital I volenteer at is look to social media to keep in touch with gastric bypass/band patients
   #hcsm 15 Jun 2009 from TweetChat
8. 
   MarksPhone @HealthSocMed yes target specific demographic groups with objectives and strategies and outcomes. Use SM as one tactic #hcsm 15 Jun 2009 from TweetChat in reply to HealthSocMed

-- this quote was brought to you by quoteurl

T3.5 Is social media message traffic on a provider/employee acct using a provider network subject to HIPAA data capture/retention requirements?

1. 
   healthblawg T3.5 HIPAA covers PHI. Social media should not include PHI except in ltd circumstances (w consent) #hcsm 15 Jun 2009 from TweetChat
2. 
   macobgyn @shrinkraproy For the OB people Check out Macarthur OBGYN on Facebook and see what we are doing. #hcsm 15 Jun 2009 from TweetChat in reply to ShrinkRapRoy
3. 
   leonpalmer Think anyone else would watch if we turned this tweetchat feed into a YouTube video? #hcsm 15 Jun 2009 from TweetChat
4. 
   macobgyn @ShrinkRapRoy Here is our practices FB page #hcsm http://bit.ly/TGJ7y 15 Jun 2009 from TweetDeck in reply to ShrinkRapRoy

-- this quote was brought to you by quoteurl

T3.6 A patient (identifies self as a pt of specific hospital) makes a public comment about an inaccurate bill on a social media account. T3.6-1 Can the hospital respond in the same forum? Can the hospital respond with helpful details? T3.6.2 Can the hospital set the record straight if the patient representation is grossly inaccurate or misleading?

1. 
   jensmccabe @HealthSocMed re: hospital setting record straight if patient account 'grossly inaccurate' exhibit A: Glenn Beck (bleck). No, counter. #hcsm 15 Jun 2009 from web in reply to HealthSocMed
2. 
   HealthSocMed @danielg280 and @healthblawg T 3.6 - pt tweets about a bill, "too much", "not right", "outrageous" #hcsm (TS) 15 Jun 2009 from Tweetie
3. 
   jensmccabe Slander, libel will somehow make their way into our precedents for rating/ranting using social media sites and tools methinks. #hcsm 15 Jun 2009 from web
4. 
   stephaniethum @HealthSocMed T3.6.2 Interesting q b/c even if they *could* set the record straight, should they, publicly, for face-saving reasons? #hcsm 15 Jun 2009 from TweetChat in reply to HealthSocMed
5. 
   danielg280 Provider can't respond publicly unless patient auths in writing. response almost always will entail the disclosure of PHI #hcsm 15 Jun 2009 from TweetChat
6. 
   ahier #hcsm @HealthSocMed pts tweeting about bill needs to be immediately personally responded to (just like other business) 15 Jun 2009 from web

-- this quote was brought to you by quoteurl

T3.7 A 3rd party posts via Twitter, Facebook, MySpace: “My grandmother has been waiting in the ER for hours, sucks!” T3.7-1 Can the provider respond to these posts via social media since the patient did not initiate the posting? What if patient had posted instead?

1. 
   healthblawg T3.6.2 Either without PHI, or w PHI if consent is given; can't assume/imply consent & w unhappy camper, not likely, so keep it generic #hcsm 15 Jun 2009 from TweetChat
2. 
   nickdawsonhc We've addressed several complaints in comments in local paper's site. (was a top google hit for me). Asked concerned pts to call me #hcsm 15 Jun 2009 from TweetChat
3. 
   Miz_Marie 50-60 people on chat- way too many comments to follow in one sitting but great topic/posts on Health care and Social Media #hcsm 15 Jun 2009 from web
4. 
   candacee116 I say respond immediately to someone upset with you and take control to make it right-show you are aware and willing to fix problems #hcsm 15 Jun 2009 from TweetChat
5. 
   ctsinclair RE T3.7 - if a family member intiated and named the provider,, the provider/org should be able to communicate back without ID of pt #hcsm 15 Jun 2009 from TweetChat
6. 
   HITshrink @danielg280 "Provider can't respond publicly" [well, they could make a general comment about how they manage xyz situations. #hcsm 15 Jun 2009 from web
7. 
   mneedham @HealthSocMed re: T3.7 “... waiting in the ER for hours... ” :: happens to us regularly - working on response protocol now. #hcsm 15 Jun 2009 from web
8. 
   healthblawg #hcsm 3.7.1 1. Send a human being to the ER empowered to cut red tape and post a... Read More: http://is.gd/125yq 15 Jun 2009 from Twitlonger
9. 
   danielg280 @HITshrink AGreed. That's the one way to do it. Still have to be careful not to disclose something patient specific #hcsm 15 Jun 2009 from TweetChat in reply to HITshrink
10. 
    ekivemark @HealthSocMed #hcsm T3.6.2 This prob exists in many other industries. Don't get in a cat fight. Be reasonable. undetones will come through 15 Jun 2009 from TweetDeck in reply to HealthSocMed

-- this quote was brought to you by quoteurl

T3.8 A patient initiates a private email or public social media communication to a doctor/provider that is not solicited and contains PHI. T3.8-1 What's the best way to handle the private email or the public social media conversation?

1. 
   mneedham @HealthSocMed re: T3.7 “... waiting in the ER for hours... ” :: response will involve personal delivery of flowers - not social media #hcsm 15 Jun 2009 from web
2. 
   macobgyn @HealthSocMed T3.8-1 Great question. Should the provider not respond? #hcsm 15 Jun 2009 from TweetChat in reply to HealthSocMed
3. 
   ctsinclair RT @donshep A good rule is to use your profile URL to have a FAQ about how you will interact on twitter. "Good tip" #hcsm 15 Jun 2009 from TweetChat
4. 
   GraftFinder Explain the "openness" of the comm plateform in PLAIN language to the patients and have them sign that they understand risk/reward #hcsm 15 Jun 2009 from TweetChat
5. 
   healthblawg T3.8 Email and other elec comm OK w est pts; "cold call" needs friendly but firm response instructing pt on how to est that rel #hcsm 15 Jun 2009 from TweetChat
6. 
   chrisboyer Wish I could spend more time on #hcsm, but will have to check back on the transcript later. Will blog my thoughts: http://bit.ly/T7rfK 15 Jun 2009 from TweetDeck
7. 
   patrickmann T3.8 I have always recommended our users remove any unwanted PHI information when replying to a patient via email. #hcsm 15 Jun 2009 from TweetChat
8. 
   GraftFinder I would much rather talk to a Dr by email personally, unless I was very sick. #hcsm 15 Jun 2009 from TweetChat
9. 
   danielg280 HIPAA actually does not mandate encrypted email. Doc can use regular email to correspond with patient and not violate law #hcsm 15 Jun 2009 from TweetChat
10. 
    danielg280 Need to think thru whether it's a good idea: will email be attended if pt emails time sensitive, will info get into med record, etc #hcsm 15 Jun 2009 from TweetChat

-- this quote was brought to you by quoteurl

---

Wrap Up

1. 
   HITshrink @StevenBarley So right ... this is a convo that must be reread later to digest, reflect. [will add to http://tr.im/ouuF #hcsm 15 Jun 2009 from web
2. 
   HealthSocMed Big thanks to David Harlow and Daniel Goldman for their time tonight at #hcsm. Virtual applause/cheering! (TS) 15 Jun 2009 from Tweetie
3. 
   HealthSocMed And many thx to all who participated in this experimental format. Obviously, lots of lessons learned. Thanks for your patience. #hcsm (TS) 15 Jun 2009 from Tweetie
4. 
   danielg280 Thanks everyone for the lively chat. Lots of fun, tho what little hair I have is standing on end and I'm sweating. . . #hcsm 15 Jun 2009 from TweetChat
5. 
   HITshrink @ekivemark Coveritlive used on my blog if you want some recap of tinight. http://bit.ly/Y101M [VERY COOL!] #hcsm 15 Jun 2009 from web
6. 
   danamlewis if you have comments, suggestions, and/or ideas for a future #hcsm, please feel free to DM @danamlewis @healthsocmed or @tstitt 15 Jun 2009 from TweetDeck
7. 
   healthblawg @patrickmann HIPAA and Son of HIPAA -- some of the questions raised by ARRA changes to law http://tinyurl.com/nvpd5j #hcsm 15 Jun 2009 from TweetChat in reply to patrickmann
8. 
   healthblawg Thank you all - and I look forward to continuing the conversation here, there and everywhere #hcsm 15 Jun 2009 from TweetChat
9. 
   otoole4info Look for transcript in the next 24 hrs I'll Tweet when it's complete! #hcsm 15 Jun 2009 from TweetChat
10. 
    danamlewis wonderful volunteer @otoole4info is compiling a transcript, & i believe @klxmedia is providing some overviews (in addition to others) #hcsm 15 Jun 2009 from TweetDeck

-- this quote was brought to you by quoteurl