Search This Blog

Friday, November 16, 2012

Dear patient advocates, e-patients and caregivers,
We’re reaching out with an invitation to design a national patient agenda…created by the best, brightest, most committed and passionate doers and thinkers among us. That means you!
Who are we? Patients/advocates/activists/caregivers like you. We sense it is the time to change the future of healthcare quality and WE WANT TO BE A BIGGER PART OF IT. What ideas to you have to fix health care? What do say that no one’s listening to? What  are you doing that works, that you could share with others? Please read below and add your 2 cents – or your 73. 

The more of us take part, the more we can accomplish and more impact we can have. Thanks!
In an effort to stem the tide of unacceptable medical harm, the federal government’s Partnership for Patients initiative seeks to reduce healthcare-acquired conditions by 40 % and 30-day re-admission rates by 20 % by 2013. In pursuing this admirable goal, and as part of the group’s contractual mandate, the PfP has been reaching out to obtain the input of patient and family representatives. Additional healthcare improvement initiatives are in process from a variety of institutional, government, consumer and private stakeholders, some of which are funded by $1 billion in Medicare Innovation grants. 

In an effort to ensure consistent interoperability and accessible information about our care, the folks in consumer engagement at the office of National Coordinator of Health Information Technology are working to involve the patient voice in patient data access.
The patient advocate community, meantime, is a passionate but fractured group of “one-offs”, consisting largely of individuals and small organizations scattered throughout the nation. Some work on legislation, others on a variety of issues such as hospital-acquired infections, informed consent, and implantable medical devices. We are all committed to improving the quality of care and the underlying culture that drives it, but have so far lacked the tools and a unified voice. Fueled in many cases by the pain of a personal loss to medical harm, many of us toil in obscurity, under-funded and without benefit of professional organizations or employers that sponsor our networking, learning, and travel opportunities.
We in the advocate community applaud the recent first steps toward sponsoring our participation in the national conversation about quality improvement. Examples are the payment of some advocates for travel expenses to attend critical meetings of the PfP, and in the case of the October PCORI conference, the providing of travel expenses and a stipend. However the inclusion of the patient voice remains in a tentative stage. Without more widespread and robust inclusion of the patient/advocate voice, from the waiting room to the boardroom, the true “partnership” between patients and providers will remain of small benefit to either.  

Frankly, despite the best intentions of groups working “to include us”, we are impatient. We recognize that these provider groups are operating with the most sincere of intentions, and may be working under contractual and/or cultural constraints. However we patients are not. The same autonomy and lack of affiliation that has proved frustrating economically  allows us to be nimble, quick, and potentially more effective because of it. And though we have so far lacked organization and unified focus, we recognize how achieving these traits will elevate our capacity and rightful status as an equal partner in forging the future of health care.
The Partnership “With” Patients Summit in Kansas City in September 2012 offered a promising glimpse of how patient advocates can effectively catalyze the pace of this change. The PWP brought together a range of participants, including patients, providers, thought leaders and industry representatives, to network and share best practices.  Conceived, promoted and funded though the tools of social media, the Summit also underscored the promise of social media to capture, convey and distill forward-thinking ideas from a broad range of people committed to the same goals. We who attended saw how exciting it would be through technology and social media to “crowd-source” a focused, common, national patient advocate agenda —taking contributions from the “many” that artfully create a “whole”—an agenda that can be embraced by the widest possible group. 

The seeds of this concept – and some early thoughts around structure and specific goals—were in fact “crowd-sourced” during an open brainstorming session at the PWP Summit, facilitated by Summit organizer Regina Holliday and Pat Mastors. It is the intention of post to present these ideas to “kickstart” discussion, suggest how we might organize them into survey questions, gather the widest possible input nationally from the patient advocate community, and craft a working agenda around which all of us can rally.
Your activities will not be limited by the agenda that’s ultimately produced. All of us will continue to pursue our respective endeavors and opportunities to have impact. 

Those unfamiliar with social media will not be left out of contributing. Steps are already being undertaken to insure patient voices from all demographics and geographies are included.
Please note this is a volunteer effort! We need your help…and hope you can be patient with our mistakes.
PWP Notes: (I’ve taken some liberty with order to organize it better)
1)    We need a name that’s inclusive of Patient/Advocates/Families and their representatives, one that’s used consistently by all in speeches, blog posts, conferences and conversations. Ideas? Do we need our own acronym? Or do we find acronyms problematic?

2)    We need bullet points and consistency of message.  Perhaps 3-5 priorities for year 1, others for year 2, etc. We build on progress. Success is more actionable with well-defined priorities.

3)    Potential suggestions of these 5 priorities:
a.    Cleanliness. The right to see hands cleaned by every person who touches him/her. A request to clean hands will be supported.
b.    Access to patient/clinical data.  We should always have access to physican’s notes, test results, etc. (SPM “Open Notes” study results support physician buy-in). This will also lead to shared decision-making.
c.     Dignity. A patient’s physical privacy will be respected. Care providers will introduce themselves by name. If the patient is conscious, a procedure will be explained and permission to proceed granted before being performed.
d.    Transparency. Cost, care and quality metrics (frequency of procedure performed, infection rate, et.) should be publicly disclosed. We should be supported in asking questions.

4)    How do you get “harmed patients” in the room? A concern of the group is that often the patient “representative” on a panel or a conference is someone who’s worked with harmed patients, or written about them, but hasn’t personally experienced being a patient with no medical connections or colleagues. There needs to be transparency (and formal disclosure? re: who is representing the patient voice in every setting.) Ideas?

5)    Funding, time parity and stipends. How do patient advocates get compensated for their time and expertise? Is it reasonable to let the free market create value? Should there be a more concerted (formal and funded) effort to identify and vet participants? Who’s responsible for creating a new job category? Who should pay and how?

6)    How do we develop/deploy patient “market power”?
a.    A “virtual collage” with faces of every advocate (or lost loved one) the group represents could be powerful (think virtual “AIDs quilt”). Can this be made into a poster or other piece of collateral that member advocates could print off and display at public meetings, a visual affirmation that “I represent thousands?”
b.    Should we host an online petition to represent our numbers? 
c.    Once agenda is agreed upon, do we want a social cause “icon” we can wear like a wrist band or lapel pin?)

7)    Should we pursue a national project, like a “Stay Well” card for patients that includes bleach wipes (effective in killing C.diff spores)? Or encourage florists to provide flowers and bleach wipes? Should we pursue a private sector partnership to accomplish this? (though this would likely happen down the road, I’ve reached out to the Clorox Company for a conversation). Are there other potential projects?
A thought I’d like to add…AHRQ is pursuing a patient reporting website to be built by the Rand Corporation, where a we could report an instance of medical harm…a wonderful potential driver of quality improvement.

            I think of advocates like Helen Haskell, and the panic of feeling in real time that you’re losing someone you love, and that no one will listen. I suggest a “panic button” on a poster on the wall in each patient’s room. It would have a phone app and a toll-free number connected to this reporting database. These reports would be anonymous but you’d have to agree to submit a full report later. Maybe each hospital could choose to assign a person who’d pick up on such calls in real time. Or maybe to start, the data just accumulates to flag dangerous hospitals/units/providers and identify patterns. But it would absolutely create more patient-driven and better accountability/transparency of patient harm.
Next Steps: We’ll be creating a survey through (Regina got them to help —yay!) to begin capturing your thoughts and get to the next level of organization. In the meantime some possible questions are below. Please feel free to respond with general thoughts in the comments field.
Possible, sample questions:
1)    Do you want to be part of a national patient advocacy group?
2)    What should this group be called? (choices a,b,c?)
3)    Please rank national actions priorities (rate 1 through 5, 1 being do not support and 5 being you support this item strongly)
hand washing campaign, bleach wipe campaign, no long sleeved uniforms or lab coats, just say no to long ties in the care setting, etc

data access
Demand access to your data by USB, CD or download, etc?

Photo ID for patients/caregivers and medical providers, Medical records with visual avatars, etc?
Yelp for providers, resources like faircare, HCHAPS awareness and etc?

4)    How important is it to ensure patient participation is included in every meeting on policy or process? (scale 1-10)
5)    Should representatives be vetted by some process? By whom? (choices) By a metric? Klout Score/Google Results/Certification Process combined?
6)    Should they be paid? By whom? (choices)
7)    How much time can you devote to this cause in tandem with your own work? (choices)
8)    What specific skill or work can you (and are you willing to) offer to this group? (Tweeting, blogging, hospital board experience, training, speaking, etc).
9)    How much do funding limitations impact your capacity to offer the above?
10)  If funding weren’t an issue, what percent of your time would you be wiling/able to devote to a national patient advocacy agenda you believed in?

We love forward to hearing from you! Please post your ideas in the comment section below!

-Pat Mastors and Regina Holliday



  1. Thank you, Regina and Pat for instigating a National Patients Agenda! I believe that every person who is selected to be a patient representative should have email contact information posted. That allows the patient community to correspond directly with their "representative". The patient representative should be selected by patients, not agency/provider. The obscurity, isolation and financial constraints of harmed patients and their advocates is easily exploited by the current system. Every future medical professional, regulatory, legislative meeting budget should include stipend/scholarship for a percentage of patient representatives subsidized by attendee fees. A publicly posted evaluation of each meeting on this issue of patient inclusion by a cadre of patient advocates would reward good actors and put others 'on notice'.

    1. @kgapo
      Jolleen, You just touched a hot issue for us: "The patient representative should be selected by patients, not agency/provider". The only one patient representative was appointed by gov. not selected by patients or patient orgs.

      This again highlights how similar are the problems of patients across the globe

  2. @kgapo

    Hi Regina and Pat, Thank you for spelling out some of my thoughts!I was right to say that Partnership WITH Patients goes global.
    It doesn't matter where we live, what is the national health care system, patients face the same problems everywhere. I find your recommendations and suggestions for an action plan realistic and stemming from own experience.

    On this Friday evening I was working on the conclusions of our National Patients Conference that took place last Friday, Nov. 2, and was thinking about where we move next, what our goals should be, when I saw your post on Facebook linking to your blog. Thank you both for your post. Greetings from Athens, Kathi

  3. Regina and Pat, what a great list to start discussion. I have lots of thoughts on this and believe I will send you an email. I've frankly been a bit off the radar for awhile because I'm just having to deal with the grief of losing my grandmother. Time heals, right? I keep hoping for that sooner than later. I'll write some things and send them to you.

  4. Kathy, so sorry for your loss. Give yourself the time you need.
    Thank you to Joleen and Kathi for your encouragement and suggestions. Please encourage your colleagues and friends to weigh in too!

  5. Regina and Pat.
    I met Regina in April at the National Press Club at a TMIT event and had no idea that there were so many patient advocates in existence. I quickly learned that our numbers are too large to count.
    Reading this post gives me such great hope. The guidelines seem right on target. Getting organized is critical-it will only increase our power and our message. I am so excited to be a part of this group and will help in any way I can. Thank you both for your gifts of time, talent and expertises that will no doubt move us all FORWARD!!

    Jo Hamilton

  6. Regina and Pat,
    This is so important. It is just such an important movement. I'm completely behind it. Count me in. I'm in a patient advocacy program at UCLA and the reading is so exclusive of patients! I thought it was changing. Maybe it is but doing the reading for one of my classes feels like its set back the patient empowerment movement. I'll think on suggestions. Count me in. Martine

  7. Thanks for this. Great ideas! I would like to see emphasis placed on Transparency, specifically banning gag clauses from settlements and allowing and encouraging all to tell their stories without fear of any retaliation. This means patients and providers, like nurses who are threatened with job loss etc. Thanks.
    Veronica James

  8. This is wonderful and exiting! I would add to the section on Dignity, that a patient's knowledge of their own body and situation needs to be respected as much as the practitioner's knowledge of medicine. I love the idea of the "panic button." Too many people do not know that they have more power and control than they think in medical situations. Having a resource to help outside of the "system" would be fabulous!

    I would love to join the movement. Thanks for all of your amazing work.
    Susan Nelsen (simple brain tumor warrior)

    1. I agree and in CERTAIN situations your knowledge of your particular illness EXCEEDS that of the person treating you, yet getting them to hear or understand this is near impossible. And is often met with hostility when you have the nerve to question their medical knowledge! Result : usually bad care experience, a panic button would be great. On a funny note an eject button would be nice for some I have met ;) Zans94

    2. I agree and in CERTAIN situations your knowledge of your particular illness EXCEEDS that of the person treating you, yet getting them to hear or understand this is near impossible. And is often met with hostility when you have the nerve to question their medical knowledge! Result : usually bad care experience, a panic button would be great. On a funny note an eject button would be nice for some I have met ;) Zans94

  9. Regina and Pat, it'll take some time for me to consider your query in its entirety. Meanwhile, on a detail level, and regarding the panic button poster and phone app: I wrote about the issue of meaningful, competent in-hospital assistance some years back. From my book, published 2008:

    "Patient‐Family Resources Reform
    Streamline On‐call Ethical Assistance to Patient‐Families
    Every hospital room and common area ought to have either a call button or Dial H-E-L-P capability for patient-families in distress or decision paralysis to call for ethical assistance. The button or number would ring to either a full-time hospital ethicist-RN or full-time hospital chaplain or mission director."

    Reporting is important but I think more important is real-time assistance. "Code Gray" for patient-family in an indeterminate state needing guidance before the hospital time cogs would carry a rounding doc (or disappeared monitoring nurse) back into patient contact.

    Perhaps our process would benefit from a survey to see which of the proposed ideas to put joint energies toward might rise to the top of our overall concern.

  10. I have loads of experience with poor care. I think some of my anger would need to subside before I could be effective as I am still embroiled in a battle with Texas doctors. Keeping records from patients not ok! Medical Associations not addressing bad behavior of physicians not ok. And not LISTENING I can't begin to tell you how many times that single issue has been a source of harm. I know more about MY body and my disease than many of these doctors because I LIVE in this body! Zans94

  11. Hello Anonymous. I hear you. Many advocates are embroiled in feelings of grief and betrayal. I hope you find the listening ear, patience, resources-- whatever you need-- to work through your pain and resolve issues so that you have peace. I can tell you there are many good people within the profession and more wonderful, committed patient advocates around the country than you can imagine. We hope to find each other and work together.

    1. Thanks thanks Pat, one of my main issues has been addressed by a doctor in another state. I no longer walk around with a heart rate that runs an average of 140 and has topped 224. The doctors in Dallas let me suffer for 7 years till there was virtually nothing left of me. I was begging for help. It has made trusting any new doctors very difficult putting them at a disadvantage before they ever walk in the room. I know it is like any profession there are the good and the bad. I wish I could have found an advocate maybe I would still have my home, business and life I spent 25 years building. This should not be allowed to happen

    2. Also is it legal for them to search your room when you are not present? Amusing really as there was nothing for them to find..... they were so convinced they were going to find something. I agree with next poster playing field of hospitalized patients ALWAYS the hospital has the power. You have no rights at all. Zans94 ;)

    3. The diagnosis I have received are Diabetes insulin with meals peripheral neuropathy, autonomic dysfunction with features of POTS, SCL-70 positive for Systemic Sclerosis, joint hyper mobility possible Ehlers Danlos genetic testing recommended to test for vascular form as my 45 year old sister died suddenly of a brain aneurysm. Since moving I have only managed to find a cardiologist who implanted a pacemaker and did sinus node modification to stop the relentless tachycardia, other than that I haven't been able to find any docs taking new Medicare patients so nothing other than the tachycardia is being addressed. I live in Wichita Kansas now after 26 years in Texas....... I sure miss Texas, just not their doctors

  12. I have been an advocate for patients rights, especially when they are hospitalized. The playing field between the hospital staff and the patient is woefully tilted in the favor of the hospital. I've been told that 'rights' are not the way to go, so I want to change what I have called rights to 'transparency and accountability.' I feel that we can form our targeted changes within this framework: transparency-medical records, off label drugs, physician competency, costs known, informed before bodily invasion, unbiased pathology; accountability: evidence-based care, adverse events acknowledged, duty to warn of health risks, and advocate present while hospitalized. Let's do this like a Christmas tree...decide what the main branches are, and then hang what we want on those major branches...and then decide how we are going to get that.

    1. You have some great thoughts, John, and I know your passion for this. Like your "Christmas tree" analogy, too. Looking forward to building the tree!

  13. This is a TERRIFIC opening manifesto to kick off building a real coalition, with real power, from our individual and group efforts. I agree with Kathi's statement that patient representation should be determined by the patient, not provided by the facility or the payer (which is the current iteration of advocacy in most clinical settings).

    The question list looks pretty good to me at first glance. If anything bubbles up from my cortex, I'll share it. I'm REALLY looking forward to filling out the survey.

    1. And of course, Casey, we'll incorporate one of the biggest questions of all: "HOW MUCH IS THAT?" :-)

  14. If you are doing a survey, I would love to would be great to get a national agenda with all of the 'ground troops' thoughts together as there are many important pieces. Please e-mail me at when the survey is ready.. thanks for your work on this!

  15. correction: **

  16. First, many thanks for organizing this effort.

    When considering a national agenda, a key factor towards reducing harm is emphasizing the need enhanced patient education. Having fully informed patients and family members is critical to not only preventing medical harm while inpatient, but also optimizing health outcomes through better self-care following discharge.

    Patient education is one of those areas in which it is easy for everyone to agree it is needed, to understand the benefit, but then it is the easiest place to cut/inconsistently do given the limited staff time and financial resources faced by hospitals. There are very few organizations doing this consistently well, across all departments, over time. Yet, it is at the heart of being able to achieve all the 10 PfP goals. My opinion is: there has to be a genuine emphasis on both patient and healthcare provider education.

    For patients, it means being educated about both their condition and their treatment options. Such education should not be done in a paternalistic manner, but rather with a literacy, language, learning style and education level reflective of the individual patient's need. One size does not fit all.

    For healthcare professionals, it means ensuring they have easy access to the latest clinical care guidelines and safety protocols. I think healthcare professionals are motivated and want to do the right thing, but often they are simply unaware or see only ‘their day-to-day box’ and don’t know how to navigate an organization’s bureaucracy to influence change on an institutional level...which is really what is ultimately needed. Hospital administration has to make these safety issues a priority, and put resources behind it, if they are going to stick.

    That’s my 2 ½ cents—education, education, education. Thanks for the opportunity to contribute.

  17. Thanks Bart, Lori and Beth. I would add that education needs to begin with patient safety 101 in middle school health curriculum if not sooner (these kids are smart enough to understand, for instance, that the antibiotic their doctor wants to prescribe might not be necessary. See the AAFF "five tests/procedures you may not need" as part of thr "Choosing Wisely" campaign.) Then they will grow up to be more educated consumers. Start 'em young!

    1. Yep, I learned so much in elementary school.... education is incredibly important.

  18. What about the goal from PWP of choosing a name for the entity of "patient advocates, e-patients and caregivers"? Your thoughts on a shorter umbrella term? An acronym? Please add your ideas.

    PACES (Patients, Advocates, Caregivers & e-Patients)?
    PARS (Patients, Advocates & their Representatives)?
    FICS (Families, Individuals and Consumers -- sounds like "Fix"?)
    PROMTAS (Person in Receipt Of Medical Treatment and their Advocates?)

    1. PCC = Patient Care Community or Patient Centered Community
      PAC = Patient Advocate Community
      P&P = Patients & Partners

      Tough one!