Patients included

Patients IncludedI recently received an invitation to speak at a conference and quickly ran it through my standard criteria. It met 4 of the 5 — pretty impressive — so I agreed to a phone call with the organizers. They let me know right away that they are open to collaboration and suggestions, so I brought up the idea of inviting a patient or caregiver to be on the panel with me. This wasn’t a new concept to them, but they wanted more information about what that would entail.

I identified 3 challenges:

  1. convincing the organization that including a consumer is worthwhile
  2. finding the right person
  3. making it worthwhile for the consumer to participate

My suggestions for each of those were as follows:

1. Read about successful examples of “patients included” conferences and learn from them, such as:

2. Look for bloggers since that can be a shortcut to finding someone who has given some thought to the issues you would want them to discuss on the panel.

3. Pay for their travel expenses and (ideally) their time. Invite them to attend the rest of the conference. Treat them like a colleague, at the minimum, and like a VIP, ideally, since they may feel some apprehension about speaking at a professional health event.

Later I realized that I could include links to SpeakerLink, the Patient Experience Speakers Bureau or the Patient Centered Care Speakers list. I could also link to background on Lucien Engelen’s Patients Included initative. And if they are ambitious, they could emulate the Stanford Medicine X ePatient Scholarship program.

More broadly, they might benefit from reading Eric Ries and Sarah Milstein’s article, Solving the Pipeline Problem, about creating a conference speaker selection process based on the following: transparency, blind selection, proactive outreach, and enlisting help.

What else am I missing? What challenges do you see? What recommendations and suggestions would you add?

I want to make this as straightforward as possible so that other people can use it as a template when they get an invitation to speak at a conference that doesn’t yet have any consumers on the agenda. Please share your thoughts in the comments.

53 thoughts on “Patients included

  1. Outstanding planks for a ‘Patients Included’ launching pad! Bingo and bullseye on the nested sub-issues that people now need to think through. Thanks much for organizing those thoughts and links in one pithy piece’ Susannah. Off to share your own link in my channels too ;->

    • LOL on mind-meld. I put it in the same basket as “conference ESP” (e.g. where someone you especially wanted to meet winds up sitting down next to you). After 20+ years as a cybernaut, I almost take it for granted that online especially, one light bulb will spark another at the same time without direct contact.

  2. I stumbled across this conference site last night and have tweeted to them about including patients — http://2014sv.pmwcintl.com/speakers.php. How can there be a discussion about personalized medicine without of the patients who are receiving care?

    Conferences need not go all in all at once when it comes to patient inclusion — but they must start somewhere. There is too much to be gained from this form of patient-provider interaction to prevent it from happening by failing to realize that patients have something real to offer to the conversation. At the very least, conference organizers should allow patients to attend for the same rate as medical students or even less (free is great).

  3. Susannah, great that you are encouraging conferences to include patients!

    In case it’s helpful, the blog post I wrote after MedX was about what academics in medicine should learn from MedX: namely that patient presence and participation make a conference much better.
    http://www.geritech.org/2013/11/what-academics-can-learn-from-medicine-x.html

    Hopefully patient participation will soon be the norm rather than a breakthrough to be applauded.

    • Thanks, Leslie! I hope so, too. Your post and the 3 I link to show the impact patients can have on discussions.

      I’m going to re-publish two very useful, practical comments from my 2008 post about the California HealthCare Foundation’s inclusion of consumers. Caron Lee led that effort and responded to questions about how she did it:

      “Regarding what defines a “patient advisor,” CHCF consciously used the term out of respect for the role that these inidivuals would fill at the conference. (One speaker felt that the label of “patient” changed the perception of how she was viewed by the medical establishment; she saw herself perceived as less autonomous and less competent.) CHCF asked the individuals who would share their experience from the perspective of a patient if “patient advisor” was acceptable, and they agreed. Several of these speakers are peer educators in their communities as well and/or serve on internal committees for health care delivery organizations.”

      And:

      “To identify patient voices, we first thought about for which sessions this would make the most sense. For example, most of the patient advisors were featured during the “Patient Voices” panel and the sessions on “Practice Level Changes and Tactics,” since they were better able to comment on these topics (e.g., care transitions, sharing medical records with patients, self management support) than on the themes for the other sets of panels — “Organizational Approaches to Quality” and “Bringing Better Care to a Population of Patients.” (Part of the reason is that few patient advisors are currently involved in improving care at the organizational and population health level.)

      Then we contacted 1) patient advisors directly who had been recommended by the conference planning committee or other colleagues and 2) already invited speakers (typically health care providers) for references, either to their own patients or patient advisors with whom they had worked. In one case, a patient advisor recommended one of her friends (Nancy Ortiz), who had been trained to be a peer educator for individuals with diabetes, to be on the Patient Voices panel.

      I called and spoke with each potential patient advisor and sent reminders and details about the conference by e-mail. For the Patient Voices panel, we also scheduled a brief teleconference with all the panelists to help give them an idea of what to expect.

      Finally, CHCF provided a small honorarium to each of the patient advisors. Several have non-health care professions and had to take personal time to speak at the conference.”

  4. Dear Susannah,
    I have more than a comment to write on your and Regina’s posts, starting from my own experience (how I first carved my way into the oncology conference in Athens in 1999, till the recent Patients in Power Conference in Athens http://www.patientsinpower.gr/default.asp?la=2, passing by my awe seeing Ann Fonfa/TheAnnieAppleseedProject getting up in a full of oncologists, surgeons and researchers monster auditorium and making sharp questions to Professors in Medicine and researchers in Dec. 2006 at the SABCS).
    It deserves writing a new post on what patient participation in medical conferences is and how organizers can best assure that patients get the most of their participation. For the time being, I will only list here links to some of the posts I have written on the matter (and I have translated in English) and to some posts of e-Patient Dave talking about his #PiPGr experience:

    The “non-patient” experience conference http://wp.me/pOEgZ-TW
    A Patients Included Conference http://wp.me/pOEgZ-Cn
    Patient participation in medical conferences wp.me/pOEgZ-ni
    The #opnHealth hosts TEDxNijmegen event does not go by chance to Thessaloniki http://wp.me/pOEgZ-Vh
    Patients in Power conference: eruption in the session on Cross Border Care http://bit.ly/1aX6od4
    Patients In Power conference: European Charter of Patient Rights http://bit.ly/1edtwIp
    Patients in Power conference: background and live blog http://bit.ly/1c0Lr5x

    • Wow! That’s a long list of posts. If someone had time to read only one, which would you recommend? Or, if you could sum up the top 3 lessons or recommendations, what would those be? I’m hoping that we can make this as simple and straightforward as possible for conference organizers, speakers, and attendees.

      For my part, I’ve been thinking this week about privilege and how to be an ally thanks to a post which crossed my screen. In the spirit of what I just wrote, I’ll link to a quote that captures the meaning. If you have time, the post is worth reading in full:

      “Ally” is not an identity, it is a set of behaviors that help acknowledge and promote underprivileged members of your community.
      – in the case of health conferences, to be an ally of patient-centered care is (I think) to be an ally of including consumers

      Or, as the saying goes, Don’t just talk about it. Be about it.

      After someone “gets it” though, how do they put it into practice? That’s also what I’d hoped to discuss here.

      Going back to my original thought — these particular conference organizers “get it” but they don’t yet have the tools or network or (what else?) in place to implement it. In the words of the post I link to, they are allies, they see the path, but they need to be shown the steps to take — what are those steps?

  5. Susannah,

    FWIW, I do this more than infrequently now (and I love it).

    Here’s my one post: What “Patients included” looks like : 2012 Permanente Executive Leadership Summit | Ted Eytan, MD

    http://www.tedeytan.com/2012/06/13/10897

    A few points:

    1. We called this work “precious cargo” because we want to this experience to reflect not just a great conference experience but the best care experience. If we model it here, it will be replicated elsewhere 🙂

    2. We assign every patient/member a host. This is a person who will know where the patient/member is at all times and perform the host role (see next point)

    2. I am clear that it is my role to ensure, the (a) safety (b) comfort (c) enjoyability for any patient/member, in that order. This means being close at all times, observing reactions, translating acronyms or confusing points, asking others to clarify for our patient/member, and if necessary, assisting patients/members in not answering questions if we’ve found areas before hand that the patient would not like to discuss (I always ask). If the patient/member leaves feeling confused/upset/hurt/de-valued then we haven’t done our job. We can’t allow this here, just as we can’t in health care. This is not smothering the patient, it’s ensuring their space/platform to be heard. Being in a room of dozens or hundreds of professionals can be daunting .

    3. Maintaining the privacy of the patient’s health information based on their preferences. It is possible for a patient to feel that they would not like their comments tweeted or their name used during or after the event. I ask this either verbally or using a structured consent form. For example, in a session with members who are transgender, they told us to use a different name to attribute their comments on social media – they do this regularly when doing public speaking.

    Sometimes a patient decides they’d rather not participate, maybe they decide this right before they go on stage. They are allowed to do this, it’s their story.

    It can be daunting / it is real work to find a patient, create the most supportive, safe environment for them to have a voice before, during and after……

    …and it’s also the best learning experience for health professionals to appreciate how much work we ask patients to do to access us.

    I willingly sign up to do this because the results are so spectacular. Our patients are universally exceptional people and they have high expectations, it’s our job to meet them, not the other way around.

    Thanks!

    Ted

    • Ted, that’s a spectacular articulation of what it takes to truly support the inclusion of patients in conferences. Thank you.

      I want to add a note to those who dismiss the subject, perhaps unwittingly, by saying “We’ll all be patients someday.” I can tell you first-hand, no, that doesn’t work. Until you’ve actually had your life on the line – until you’ve had a diagnosis that stops you in your tracks, knowing your life will never be the same – until then, you don’t KNOW what it is to be in need, to really need help. And support. And care.

      I say this: want to know if you have Patients Included? Ask this: “Are there any actual sick people in the room?”

      I’ve become wary of myself in many ways, since I’m no longer sick. Even I know it makes a big difference when there are actual sick people involved.

  6. Susannah, what a great idea! There have been plenty of conferences with “social patients”, those patients who are involved in social media – Kerri Morrone Sparling comes to mind, as well as e-patient Dave, and “sponsored”patients. But there has been a dearth of “patient patients.” It’s certainly a constituency worth listening to. Good geological mining!

  7. Right now I’m at a conference in Brussels, “Are we ready for patient empowerment?” I spoke in the morning, as did other observer / analyst types. All good stuff.

    After lunch: a punch in the gut. Real patient/family people – genuine suffering portrayed for real.

    — Sonja Develter initiated Villa Indigo, a respite home. I’ve heard people say how hard it is to be a caregiver – Alex Drane says it affects health as much as diseases do. But it ripped my heart out to hear of a mom who was so exhausted she withheld a med so her child would seize and an ambulance would come; it was her only chance for respite.

    — Noëlle Baudet was the mother of Harris, a hemophiliac boy who then got a brain tumor, ultimately dying at 16. The E.R. trips where time after time they were delayed because doctor after doctor didn’t think these parents know what they were talking about. Her heartfelt story (through a simultaneous interpreter) made so clear how hard such a life is.

    — Dominique Damas is speaking right now – mother of three boys who all, it turns out, have Fragile X Syndrome. Lord, the frustration and disrepect they endured.

    No, damn you; no, we are NOT “all patients.” It makes a DAMN BIG DIFFERENCE when there are ACTUAL SICK PEOPLE in the room. Until your life changes like this, you don’t KNOW.

    • Dave, I saw your tweets and the emotion came through in just the text on the screen, as it does here.

      Patients and caregivers speaking at patient engagement events is (to you and I) obvious. Health 2.0, Medicine X, e-Patient Connections, the smoking cessation research symposium I blogged about, TEDx, TEDMED…etc.

      But what about scientific conferences? Is there a place for patients and caregivers there? Do they play a different role, maybe contributing real-world testimony on how a treatment is really administered at home? What if they get emotional — or provoke emotion while even staying cool themselves — and make the other attendees uncomfortable?

      I’m not saying I agree with this, but it is true that some conference organizers specifically do not want emotion to be part of the agenda. As Erin Moore has written, she has been told that “patients are a distraction” at scientific conferences.

      If anyone else has experience with this, please share. I think we need to understand all sides.

      • > some conference organizers specifically
        > do not want emotion to be part of the agenda.

        Understood. I agree that emotion is separate from science per se, which must be limited to the facts, in (I think) exactly the same way that a surgeon must be focused on the work at hand, not the family members whose future hangs in the balance. It’s a tough mix.

        So I wonder if patients are the distraction, or if emotions evoked by the patients are the distraction. IMO, emotions shine the flashlight on why it matters – the human cost or benefit. The women I saw today shared clear examples of the sad emotions of difficult situations. I, on the other hand, famously experienced the best: blessed life moments that surely would not have happened without the best of medicine.

        More in the next comment.

      • To continue: now we get to cases where patients aren’t in the least being emotional – where patients simply disagree with the scientists, on scientific grounds. This begs the question: what if patients are included, not for their sensations of being sick, but because they see the scientific problem differently?

        In that situation, are patients a distraction because of their cloying needs, or are they a problem because they raise annoying questions about the researchers’ chosen focus? What if what researchers value is not what scientifically astute patients value?

        Two e-patient cases come to mind. The first is the Parkinson’s Creative Collective, whose extraordinary new book The Peripatetic Pursuit of Parkinson’s is a view of the disease from the patient’s perspective, in a fascinatingly executed full color coffee table book: you can open it anywhere and be drawn in, though you can also read it from the front.

        It’s not intended to be a textbook on the disease itself – it’s about living with the disease. And chapter 7 is about advocacy “for real change in science, medicine and regulation.” I’ve met some of these people, and there’s not a teardrop in the group. And there is good hardnosed science – expressing the patients’ view of such core issues of study design as sham brain surgery and statistical analysis of the placebo effect.

        The other fascinating example is Kelly Young, the famous “RA Warrior,” whose foundation is working to quite literally change the definition of the disease (and even its name) to be more of how patients experience it and more scientifically accurate.

        Kelly’s a staunch advocate, but on her blog you don’t see sob stories. You see some tough stories, but they’re driven by cold facts, not emotion. Her latest post is a great example, having attended yet another conference where the professionals simply dismissed the experiences of informed patients.

        I honestly wonder what the “patients are a distraction” person would say, reading these scientific patients’ views. And where astute patients’ priorities differ from those of scientists in the field, what is the justification for excluding patients?

        If good science always involves robust debate of the issues, what is the justification for excluding the most-affected party, the patient?

        • I just want to express my enthusiasm for this point, Dave. I don’t think it’s too controversial to point out that researchers have all sorts of priorities that are not necessarily aligned with those of patients. That’s not to say that researchers are bad people, so nobody should get defensive about this, but academic careers and grant awards are part of the picture here. Researchers are under enormous pressures in these areas which forces them to put energy toward things that don’t result in actual improvement for patients.

          I run a young patient organization for a rare disease and all of the examples that I see in this space of impressive gains are driven by patient orgs getting neck deep into the science — but I see so much resistance to this when I interact with researchers. Researchers will articulate to me that patient organizations are for peer support. Well, yes, they can be, but leaving engaged patients out of the science is an enormous disservice to progress.

          I have been invited to two small scientific meetings this year where a deliberate effort was made to include patient advocacy. Both times, we were left out of meeting planning and were not on the meeting agenda. Both meetings were excruciating for me, but I am grateful to have been invited. I am hoping that this evolves and gets better — or maybe I just have to produce my own damn meeting. There aren’t good models for this yet, I think change is in the air though. I am grateful to all of the advocates plugging away at it.

          • Great conversation triggered by Sussannah’s post! I have quoted Susannah’s post and the comments to the European researchers, clinicians and patient representatives yesterday in Ljubliana/Slovenia at the EPAAC (www.epaac.eu) Open Forum. Surprise, all knew Pew but few knew that Susannah has this thought provoking blog!
            My tweet linking to Susannah’s post was much commented during the breaks
            ‏@kgapo 26 Nov
            in #epaac today representatives of pt orgs+other stakeholders are present but wht abt “patient patients”? http://bit.ly/18qKum8 #opnhealth
            Indeed, we were there talking about screening which is fine but this is not the main concern of patients in Europe now. It’s access to healthcare, as millions of Europeans are excluded from healthcare as a result of the financial crisis, and no “real patients” were there to talk about it…

  8. Not going to retype the lengthy comment I left on Regina’s (Vulcan Mind Meld) post but here’s the highlight: And then there are people like me who do not fit in to the epatient category per se because we have not made our condition/disease/illness part of our primary public identity but who have a lot to contribute about how talk with patients and caregivers.

    After 25+ years of living with a chronic, sometimes debilitating illness, 15+ years of writing for healthcare and pharma, plus my swoon-worthy status as a Mayo Clinic Center for Social Media Platinum (!) member, you’d think I’d have figured this out. I have not.

    • Thanks, Meredith — it’s a great comment and shows that even people who are on the path, who are helping to shine a light on the path, are not always clear on the next right step to take.

  9. Carolyn Thomas, aka The Ethical Nag, has a new (to me) post up: Has industry co-opted patient engagement?

    Part of it speaks directly to what we are discussing: the inclusion (sometimes cynical) of consumers as window-dressing. She has some damning examples, but cited PatientsLikeMe in a way that didn’t resonate with me and I think is important to this discussion, so I’m pasting my comment here:

    I observe the situation from the standpoint of a researcher who is often asked to be the “patient voice” at conferences. I am happy to provide data and insights based on survey research and fieldwork, but I also try to educate conference organizers about how to *really* include the consumer point of view. I wrote a post about how I do that and it’s generating an interesting conversation. I’d love to have you and your readers join in, if you have time:

    http://susannahfox.com/2013/11/21/patients-included/

    One objection I’ve heard to including “real people” in professional meetings — whether pharma or medical or other industry — is that it is sometimes not appropriate to include emotion or N=1 storytelling and experiences. I’m not saying I agree, I’m saying that is what I’ve heard.

    In those cases I think of — yes — PatientsLikeMe and their emphasis on tracking real people’s experiences with medications and treatments. The company is transparent about their mission and tactics and they use the data they collect to write scientific papers and to win a seat at the table with pharma, clinicians, scientists, etc. I’ve heard various forms of the following quote, attributed to Sir Austin Bradford Hill, pioneer of the randomized clinical trial, and would like to hear what you think of it: “Health statistics represent people with the tears wiped off.”

    Other patient- or family-led condition groups who I have heard have wielded power at scientific meetings: cystic fibrosis, Parkinson’s, breast cancer…

    So maybe we can begin to talk about a taxonomy of patient engagement. And a taxonomy of organizations who attempt it, with various levels of success or cynicism.

  10. Hi again Susannah – love the lively comments here so far! Thanks so much for including a link to my “co-opting patient engagement” post – from last October, actually – how did you miss it? 😉 … and especially for leaving your astute comments there, as well as repeating them here.

    As I replied to you (there!), my concern about some for-profit companies (PatientsLikeMe, for example) is exactly as the New York Times piece also noted, despite PLM’s well-known transparency about selling patient data, i.e: that patients “typically have no way of knowing whether their health profiles contribute directly to the development of more effective treatments — or are simply mined to create more effective drug marketing”.

    I too read ePatient Dave’s Twitter reaction this morning to “the punch in the gut” he and his fellow conference-goers in Brussels are experiencing because they are listening to “real” patient/family stories. There is simply no substitute for “real”. Yet some professionals will continue to reject patient inclusion on their medical conference agenda, much like the doc who left an online comment recently saying that he gets to hear the “patient perspective” all day long in his practice, so why should he have to sit and listen to more patient stories at his conferences?

    When I attended the Canadian Cardiovascular Congress in Vancouver, I did so not as a heart patient/speaker, but with media accreditation. A press pass gave me unfettered access to the docs and researchers I wanted to reach and write about for my Heart Sisters blog readers in a way that being invited to talk for 15 minutes onstage never would have. This may be yet another way to extend the patient’s voice indirectly, particularly in medical conferences (vs ‘patient included’ conferences like Stanford’s Medicine X).

    And as undeniably valuable as your Pew research data are to your conference audiences, it is, in my opinion, inappropriate that you are asked/expected to represent the “patient voice” at these conferences (and I have a feeling you point this fact out to conference organizers). Just as you may have worked with and listened to caregivers during the course of your job, that reality doesn’t of course make yours the voice of caregivers, any more than my own career in palliative care working with and listening to all those sick people in all those hospice beds made me the “patient voice” of those people or their families. In fact, years of that valuable third-hand experience didn’t make one damned bit of difference in knowing what it’s actually like to be really ill before I became really ill myself.

    This “We Are All Patients” bullshit, excuse my French, is just that, as Dave is now so passionately expressing. One only hopes that those tokenistic conference organizers might one day listen to him. Until then, it’s often merely a bandwagon upon which trend-conscious organizers want to jump!

    I can only speak for myself as a person living with ongoing cardiac issues, but I’m neither remotely interested in nor physically capable of being viewed as just some conference organizer’s ‘token patient’ tick box to be checked off the planning list.

    regards,
    C.

    • Oh my, your post is from Oct. *2012* – not even 2013. Goes to show how fast I’m trying to move today, eager to be spreading the word about a report release tomorrow (with a special section on people with heart conditions, no less), hosting this great discussion, and contributing to others.

      Thank you for the reply and for the French 🙂

  11. Hi Susannah–Long time admirer, first time commenter. I love how you and others (e-Patient Dave, Regina Holliday, Leslie Kernisan) continue to push on putting the patient’s voice into care. As a Healthwiser, it’s close to my heart, but as someone with aging parents and in the position of periodic family care-giver I want to draw attention to the fact that the “patient voice” is often broader than just the patient. Keep up the great work!

    • Yes, a limitation of the word “patient” (or “e-patient”) is that it doesn’t seem to account for family caregivers, who are central to health and health care. I thought about titling the post “People included” but it didn’t have the same punch (and didn’t have the connection to Lucien’s idea and logo). Thanks for the reminder to think of caregivers, too.

      • There’s an art – an important one – to summarizing a principle into something concise and memorable. The underlying principle of “patients included” is that medicine needs to stop thinking ABOUT patients and have the *the patient point of view* actively involved in the discussions at their meetings.

        We could say “patients and family members and other caregivers included, but it’d get nowhere … sorta reminds me of a slogan the USPS had in a campaign in the 80s, with its catchy slogan “Postal knowledge benefits the mailer.”

        At the same time, I really like that people are thinking about “What do we mean by that??”

        • Agree and yet, as someone who has been in both roles (patient and caregiver) I can attest that these are different situations relative to expectations. But wait! There’s more! I’ve also been a paid caregiver (personal aide) within a state-funded program and that’s yet another dimension that we need to address.

          • FWIW, I have been saying “patient and family centered care” since about 2008, when Beverly Johnson of IPFCC taught it to me :).

            I use the badge that Lucien created as an umbrella term, not as exclusive. In 2012, we actually invited 4 member families, not 4 members to our Executive Leadership Summit.

            Important to remember that to mainstream health care, the idea of patient involvement at all is novel, so for the majority of the system that is not in our little bubble of understanding, this gets us somewhere.

            Let’s keep innovating!

          • Oh, and I should probably also add, I use “family” as an umbrella term too 🙂 – since many of us were not legally allowed to be family members (and in fact the term “family” has and is still used today as a weapon against people from minority groups) that distinction is fluid and in the eyes of the patient, not in our eyes.

          • But, Meredith, would you agree that in the context of the Patients Included badge and its original post http://dave.pt/patientsincluded, it’s an equivalent mistake for event organizers to omit any of them?

            I keep thinking of CMS’s malnamed “Partnership for Patients,” suggesting “We over here (with abilities) are thinking together about you over there.” Would that they actively involved thoughts from the patients+caregivers+aides.

            IOW, what Ted said, too.

  12. Yes, what Ted said/wrote. I like “patient and family-centered care” and appreciate his note about using “family” as an umbrella term because, these days, what the heck does that even mean? And, in reality, it’s not unusual for families to either flee caregiving or to be so dysfunctional that their “help” does more harm than good. Again, I speak/write from multiple sad (read:infuriating) experiences during which I, as non-family member, ended up taking over care that was either abandoned or screwed up by family.

    In sum, it’s a mess. Thank God we, at least, can talk about these things and share the drain/pain of it all.

      • Dear Carla and Susannah,
        The discussion on who can represent patients is a hot topic also on the other side of the pond and I thank you both for having drawn my attention on these two excellent articles. In Europe, European patients & consumers representatives of organisations (exclusively) sit at the PCWP=Patients & Consumers Working Group (http://bit.ly/1i7LoH5) of the EMA(European Medicines Agency), the counterpart of FDA. This is a recent development but there is already pressure for a wider representation of patients and consumers. So the discussion on who can or is entitled to represent patients seems to become very lively in the months ahead.

  13. As a primary care physician, I applaud efforts to include patient perspectives. Since I practice in a publicly-funded county health system, my patients are low-income, and many have limited English proficiency and/ or limited health literacy. I encourage all of you who care about patient engagement to think of their perspectives, which may not be well-represented among blogs or the e-patient community. Deep and pervasive health disparities exist, and we need diverse patient perspectives to change that.

    • Absolutely! If you (or anyone reading this thread) have ideas for how to help conference organizers connect with lower SES patients and caregivers, please share. I’m hoping this post and the comments can be a practical resource.

      • Dear Susannah & Urmimala, Although lower SES patients & carers are the largest in numbers their representation is minimal to nil.In intl medical and advocacy conferences I have attended on both sides of the pond, the anonymous patient or carer was absent, but representatives or European or Intl Patient organizations were present in great numbers. Conference organizers are interested in well known, articulate patient advocates but far less to the anonymous patient or carer. Although the contribution of patient orgs representatives is important, the perspective of lay patients and carers cannot be absent. Its absence gives a totally different aspect of the patient experience….

        • It’s also the case that in addition to not having the travel funds, many caregivers are too busy giving care to travel. For ~6 years I was a paid personal aide ($5.50/hr., New Jersey state program) for a woman with quadriplegia. Between her quad stuff and my fibro and our age (we were both in our 50s) it was quite the scene!

          I digress. My point: her daily care was so extensive that there’s no way I could have gone anywhere to talk about it. I did write about it on my personal blog under the heading “My Life as a Personal Aide.” http://bit.ly/xdo8Bi I always hope people who find those posts to get a clue about what the experience was/is like.

          • dear Meredith, I pretty well know what the life of a carer is as I had to care for my late parents…Indeed, carers who have to care about the patient, their own life, making ends meet do not have time, energy and money for conferences.. However, they do need support and knowledge, and I appreciate your sharing with us your older posts on the matter.
            In Greece, we have an excellent support and training program for carers of
            ALZ patients, but I hardly know of any activities where carers participate for the reasons you so well described. There are of course, the parents of children with rare or other serious diseases but I don’t know of structured such initiatives.

          • Boy, everyone, if you want to “get it” about caregivers, you MUST read Meredith’s 2010 post at the end of those six years, as she prepared to move away. It’s great writing, even though it’s only a few hundred words.

            Meredith, how is Ruth doing these days?

          • Oh, Dave, thanks for linking to one of my favorite posts about my on site time with Ruth. She’s still living independently and slugging it out with the state of New Jersey for proper funding and care. I stopped in recently on my way through Princeton, stocked her freezer with me-cooked meals, swiftly deep cleaned her kitchen and bathroom, and scooped kitty litter while we chatted and laughed. And, for old time’s sake, I bitched about how disgusting people can be in the domain of caregiving. Hoping to pre-decease her so she gets to inherit something!

  14. Since this blog serves as my outboard memory, I’m going to add a comment linking to Katie McCurdy’s post:

    Recruiting patients for healthcare design research: why and how to do it

    She writes about why designers should include patients and then gives concrete tips about how to recruit such as:

    1. Post flyers at healthcare clinics and institutions
    2. Find the ‘influencers’
    3. Show up at support groups
    4. Connect with online patient communities, including twitter
    5. Reach out to ‘friends and family’

    And finally: “It is absolutely standard practice to pay any user research participants for their time. Patients are no different.”

    • Thanks for bumping this up for new attention!

      It would be beneficial, I think, to know what the going rate is for user-research participants. I think it’d be useful, too, to think about some dividing line (probably more of a gray area) between being “just a user” and crossing over to be an actual consultant / thought advisor on a project, contributing not just feedback on the user experience but insights into the nature of the problem.

  15. I re-posted this on Twitter today and am hearing from more people about “patients included” conferences they have attended recently such as Cleveland Clinic’s Patient Experience: Empathy & Innovation Summit and MedCity ENGAGE. Please post a comment if you have observations, tips, complaints, questions — let’s keep building this resource.

    I also wanted to point out a side benefit of leaders like Larry Chu of Medicine X and Matthew Holt & Indu Subaiya of Health 2.0: their video collections can serve as calling cards for patient speakers.

    See:

    http://www.health2con.com/tv/

    https://www.youtube.com/user/StanfordMedicineX

    It’s very reassuring to a conference organizer to see that someone can hold an audience captive like Joselin Linder and Sarah Kucharski were able to do.

    • Hello Susannah – glad you’re still adding to and tweaking this great post!

      Just heard about another health conference coming up next spring – the Lown Institute’s “Road to Right Care” conference in beautiful San Diego March 7-11, 2015. The event’s lofty goal is to “change the existing culture of medical overuse and underuse, so that patients receive the care they want and need.” http://www.cvent.com/events/the-road-to-right-care-engage-organize-transform/event-summary-c9242becf72745409148358eb8f9e7b2.aspx?lang=en&sms=2

      Not only is this a ‘patients included’ event, the Lown Institute is offering conference (and travel) scholarships to medical and nursing students, community leaders, patients and patient advocates.

      regards,
      C.

    • Susannah,

      Thanks for being an advocate and adding nuances and learning as I go along…

      We hosted the reception for MedCity Engage, and I *just* posted the photos on flickr for people to peruse: https://www.flickr.com/photos/taedc/sets/72157648329038161/

      Notice a few things:

      1. Patients talking to doctors and doctors talking to patients.
      2. Walking Gallery of Health Care, it’s every where, an accepted part of being at an event – you have to be a person, too.
      3. Respect. Notice the food. It is healthy. On purpose. Kaiser Permanente has a healthy catering policy as of May 1, 2014, we have learned that beyond respecting patients and people by inviting them to be a part of things, we respect them by providing them adequate and healthy nutrition and comfortable surroundings. I see so many conferences today that disrespect all the attendees by not taking any time to review catering/food choices before a meeting to control for dietary restrictions and health. I can’t tell you the number of people who have spontaneously stopped us in the middle of and event and said, “Thank you. Thank you for not holding me hostage with unhealthy/allergenic food. I brought my own because this worried me, and your thoughtfulness makes this more enjoyable for me.”
      4. Physical activity – this series doesn’t show it, but we don’t allow sitting meetings either. When people give me a meeting agenda, we always review it in advance and say, “how may we include physical activity in this agenda?”

      People/patients sometimes travel a long way to be heard, and today they are often asked to risk their health in the process, and for no good reason. The next generation of “PatientsIncluded” is “PatientsIncluded in Good Health.”

      Thanks to you and this community for letting us try new things. We are having so much fun being supported by you that we can’t stand it.

      🙂

      Ted

      • Thank you, Ted. I agree with Dave — your leadership is truly inspiring. “How might we include physical activity?” is now paired with “how might we include physical comforts?” in the pantheon of thoughtful conference organization.

  16. Dear Readers,

    Patient partners have made our research on arthritis more relevant and appropriate. If you would like to know more please see :

    http://www.omeract.org/patient_research_partners.html

    and read Chapter 4 of the OMERACT Handbook which can be downloaded from:

    http://www.omeract.org/omeract_publications.html

    Chapter 4 has references to some in-depth articles written by Maarten de Wit, a patient who has become an important part of the OMERACT organisation.

  17. Since this popped up again a year later, due to John’s new comment, I’ll add this, which has loomed as more and more potent in my speeches in the past year:

    In Sept 12 the IOM published Best Care at Lower Cost,, with these words:

    Patient-Clinician Partnerships
    A learning health care system is anchored on patient needs and perspectives and promotes the inclusion of patients, families, and other caregivers as vital members of the continuously learning care team. Emphasis added

    Everyone (including each of us on this post) should think seriously about those words.

    Anchored: not an afterthought; anchored on…

    Patient perspectives: the patient’s point of view! The patient’s way of looking at things! I’m leaving out “patient needs” because everyone believes they know what patients need.

    Promotes the inclusion of patients, families and caregivers – any questions on what that means? PROMOTES, not just “allows” or “humors.” Promotes. …

    As vital members of the team.
    _______

    Okay, so: system needs to be anchored on the patient’s way of looking at things, and promote the inclusion of patients. So, where’s the argument for events that have no patient perspectives, and don’t promote the inclusion of patients & caregivers?
    _______

    I assert:
    People who attend conferences to better understand the future of medicine might want to consider what the IOM says about that future and ask, “Does this conference provide that?”
    People who produce conferences might want to consider what they need to do, to follow the IOM’s guidance.

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