Docs helping patients to surf the internet

[LinksEtc]

Docs/orgs often try to help patients safely surf the net and/or find appropriate support groups.

Some links:


"Help patients find information on the Internet: Tips to surf safely"
http://www.kevinmd.com/blog/2013/06/patients-find-information-internet-tips-surf-safely.html

Over the years, I have tried many approaches to educating patients as to how to safely surf the Internet for health information.

Overall, the .edu, .gov and .org websites are excellent sources of reliable evidence-based health information.

"When the worst medical advice comes from the patient"
http://www.latimes.com/health/la-he-doctor-patient-influence-20140607-story.html

Dr. Cary Presant outlines how patients can navigate safe passage through thousands of tempting but not always reliable sites by sticking to ones that are sponsored by the federal government, national nonprofit healthcare organizations or universities.

"How to Navigate the Internet for Health Information"
http://700childrens.nationwidechildrens.org/navigate-internet-health-information/

Sites developed by a major medical association, patient advocacy group, or clinicians are generally more reputable and up to date.

"How To Become a FAACT-Recognized Support Group"
http://www.foodallergyawareness.org/education/support_group_development-5/start_a_support_group-14/

At least one medical professional serving on a medical advisory board (MAB), which one MUST be a board-certified allergist.

"Sharing Internet Health Information With Your Doctor"
http://patients.about.com/od/therightdoctorforyou/a/shareinternet.htm

DO believe, and plan to share, only information found on credible health websites.

I have mixed feelings about this.  Obviously, there is a lot of misinformation on the internet and many patients could use guidance.  I often link to those respected type of sources mentioned above.

On the other hand, for educated patients/caregivers, I feel like this approach/guidance feels a little paternalistic, like it underestimates my ability as a caregiver to find reliable info and support.

I have learned so much over the years at FAS, which is purely a patient/caregiver support group without a medical advisor.  I have seen our group get a major FA org to correct/improve its info.  I have seen our group advocating things like 504s before other major groups truly got on board with them.  I have seen members of our group know the info they were getting from some docs/allergists was sometimes suspect, and those members often switched docs.  I'm not saying our group is perfect.

My feeling is that maybe we can be more frank.  For instance, with schools, the work nicely/cooperatively together approach is wonderful when all parties come together with good intentions, but in reality, sometimes things get nasty and parents have to be prepared.  We don't have product sponsors so if a company is having lots of FA recalls, we aren't afraid to openly call them out on it.  We don't have a med adv board, so when we say we like a doc/hospital or don't, we are speaking from our hearts, not a sense of loyalty.  We aren't trying to raise $, so that doesn't cloud what we do here.  If I see a link with good info, I use it, I don't want to compete with the org or discourage others from visiting a helpful site.

Also, I'm free to be critical of those respected sources.  For instance, I am a huge cheerleader for FARE's food allergy action plan (ECP), but I'm probably a huge pain in their rear concerning sesame.  Another example, if I just go to the FDA site to learn about sesame labeling, I would not be able to safely figure out how to read a label for sesame. 

Like I've said, I know our group has had its faults ... but, really, at least from my perspective, it has been a good fit for me.

I don't know.  It's a complicated issue.  What do you think?


ETA - warning, I may tweet this thread  .

[twinturbo]

Easily half our medical issue is actually legal because the majority of LTFA are younger making education access a huge issue. This isn't a Gen X or above crisis. The result are allergists (and by extension or in conjunction with psychologists) who don't stay in their lane no matter how much worse they make the road for us. If a board certified allergist is required so should a advocacy liaison from the state's NDRN office to offset the legal void allergists try to fill.

[CMdeux]

Agreed.


I also agree (as you know) with the assertion that our FREEDOM from the fetters of sponsorship or medical advisorship on an official basis means that we can be extremely frank.

It also means that there is sometimes quite spirited debate about the merits of alternative/cutting edge research, including whether or not some things are DIY territory.

I'm beyond proud of FAS for being the force behind the shift toward Section 504 for LTFA, and for being home to several people who have said "No.  I'm NOT going to go away.  I'm going to win, and if I burn bridges so be it, because this is WRONG."  I am in awe of the fortitude that it takes to pursue due process or court action with a school (or other organization) when it is so much easier to just walk away.

I'm also beyond proud that our community has been one of the first to support and sponsor individual accommodations even within the community, and while that has not been without growing pains (to say the least)-- it has left us with a position that is flexible and understanding.  Some members do NOT need to have kids isolated from casual contact with their allergens, and some of us DO pursue desensitization (even though it's still quite controversial), and that is okay.

It's largely okay because while we can DEBATE that stuff here, we also don't adhere to a SINGLE party line about management, the way a single allergist, no matter how current or responsive, might well do.

I've learned so much from y'all.  You make me THINK deeply, and you make me face things about this journey that I don't always want to look at-- but I always seem to wind up in a better place for having done that.  Always. 

[LinksEtc]

I think the internet has rattled the patient-doc relationship, the power balance, the knowledge balance.  Docs can't stop patients from going on the internet, but some would like to have some control or influence.  There is a lot of cr*p on the internet ... doc involvement in the online community can be very helpful.  I can see the logic and usefulness of docs recommending patients to the "respected" sites ... and they probably couldn't recommend a group like ours because of liability concerns.

I think it's harder for others to judge the quality of a .com group, but once such a group establishes a reputation for not dealing in cr*p, I don't think such a patient group should be excluded from meaningfully participating in the larger community, I don't think that the value of patients/caregivers should be underestimated.

It should be about the quality of the info, the value of the ideas (and of course the support function of a group like ours)... not about pure control .... not about making "official patient organizations" the only accepted voice of the patient viewpoint.  The unfiltered voices of patients/caregivers like us have value. 


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The issues of surfing the internet & the doc-patient relationship are connected.

Some docs don't want to work with patients that do their own research.  Some prefer more passive and unquestioning patients.

"Doctors Complaints About Patients' Behavior"
http://patients.about.com/od/doctorsandproviders/a/doctorcomplaints.htm

Some doctors just don't want to work with empowered patients. They can't be bothered, or they are intimidated. Mary Shomon, the About.com Guide to Thyroid, reported that a doctor she used to see wrote "petite papier" (meaning "little paper" in French) on some patient records. The notation referred to the fact that Mary did much of her own research, and would compile questions ahead of visiting her doctor.

I think that a lot of docs like educated patients, but there are other issues like time, communication style, respect, understanding that the docs are the experts, different perspectives, etc.  I've definitely made mistakes in how I approach docs with internet info.

[ajasfolks2]

Agreed.


I also agree (as you know) with the assertion that our FREEDOM from the fetters of sponsorship or medical advisorship on an official basis means that we can be extremely frank.

It also means that there is sometimes quite spirited debate about the merits of alternative/cutting edge research, including whether or not some things are DIY territory.

I'm beyond proud of FAS for being the force behind the shift toward Section 504 for LTFA, and for being home to several people who have said "No.  I'm NOT going to go away.  I'm going to win, and if I burn bridges so be it, because this is WRONG."  I am in awe of the fortitude that it takes to pursue due process or court action with a school (or other organization) when it is so much easier to just walk away.

I'm also beyond proud that our community has been one of the first to support and sponsor individual accommodations even within the community, and while that has not been without growing pains (to say the least)-- it has left us with a position that is flexible and understanding.  Some members do NOT need to have kids isolated from casual contact with their allergens, and some of us DO pursue desensitization (even though it's still quite controversial), and that is okay.

It's largely okay because while we can DEBATE that stuff here, we also don't adhere to a SINGLE party line about management, the way a single allergist, no matter how current or responsive, might well do.

I've learned so much from y'all.  You make me THINK deeply, and you make me face things about this journey that I don't always want to look at-- but I always seem to wind up in a better place for having done that.  Always. 

Couldn't have said it better.

[twinturbo]

There's not a lot of maintenance or treatment involved in anaphylaxis prevention by allergists per patient. It's all field work by the patient or caregiver when you get down to it. My doctor does nothing to actively prevent anaphylaxis. We go for tests, EAI scripts and EAP. No less or more than Sicherer did for us.

For environmental allergens or anything established treatments exist for like venom desensitization, sure, they're great. I'm sure they'd love to treat us for LTFA but there's not anything that can be done at the moment. For that we have to reach out for clinical trials and the like. I guess if the question is how medically valid FAS is... I dunno, I think as CM points out we *know* how individual this particular autoimmune disease runs which immunology as a branch of medicine is just now starting to truly embrace into its culture. It's fair to say we operate on peer review, my personal view is I would extend that to counting on one another to peer review, catch mistakes, engage in continuous improvement and refinement.

It's a support group--not a get butthurt, entrench and never get over petty issues group. Doesn't the tagline what it's really like to live with food allergies say it all? It blows. The lower your threshold, the greater the number of ubiquitous, common allergens, the earlier anaphylaxis hits, the more it blows. I do agree the ecosystem provides a medium friendly to individuals inclined towards, "Nah, I don't think I'm going to grab my ankles to preserve status quo."

[LinksEtc]

Doesn't the tagline what it's really like to live with food allergies say it all? It blows. The lower your threshold, the greater the number of ubiquitous, common allergens, the earlier anaphylaxis hits, the more it blows.

[LinksEtc]

This is kind of a pie in the sky wish ....

I wish there was a place on the internet where docs and regular patients/caregivers could have deep discussions about general things (not specific patient/medical advice) ....

A place that it would be clear the docs would be free from liability concerns, free from concerns of violating ethical boundaries ....

A place where patients could freely speak their minds without being labeled a "bad" patient/caregiver, a think-she-knows-it-all type, a google mom ... free from fears of offending the doc or damaging the relationship ....

A place where there is actually time to talk about ways things could be improved, to talk about general ideas and possibilities ...

A place where docs are not just educating patients, but where patients are sharing their knowledge with docs ...

Where real communication and interaction could occur.


Truly embrace the potential of the internet.

[twinturbo]

Conferences accomplish a lot of that already, IMO. Docs share info from them through social media. Still, I don't know how much there is to report, and even there support groups comprised of patients are the nexus connecting the medical with legal to balance out life's necessities. Most docs get to punch out on food allergies at 5:00 pm. I can't imagine they want to spend more time on work-unpaid and with patients. If anything I would want board certified allergists to start regulating EMS response and training. THAT is where they can make an IMMENSE difference NOW that has a direct net positive impact on patient survival rate, treatment. Something that we as patients can't really do as we learned from the FARE webinar on epinephrine in EMS. It's a cluster fudge patchwork run by EMT basics under the direction of a regional MD that signs off on what meds they can carry and administer on who.

[LinksEtc]

Conferences accomplish a lot of that already, IMO. Docs share info from them through social media. Still, I don't know how much there is to report, and even there support groups comprised of patients are the nexus connecting the medical with legal to balance out life's necessities. Most docs get to punch out on food allergies at 5:00 pm. I can't imagine they want to spend more time on work-unpaid and with patients.

but most of us regular patients aren't a part of those conferences.  I agree that a lot of docs wouldn't want to spend more time online with us, but I bet some would love to chat with us once in a while ... just like we chat with each other about FA even when we don't need to, we sometimes enjoy just talking about FA topics ... and sometimes it leads us to interesting places.  Plus it wouldn't be working with "their" patients, it would be chatting with the general category of patients/caregivers ... like twitter chats but without character restrictions, without the questions controlled.  It'd be like twitter where anybody could talk (patient, nurse, doc, hospital admin), but it'd be more like a forum environment where communication could deepen.

[LinksEtc]

If anything I would want board certified allergists to start regulating EMS response and training. THAT is where they can make an IMMENSE difference NOW that has a direct net positive impact on patient survival rate, treatment. Something that we as patients can't really do as we learned from the FARE webinar on epinephrine in EMS. It's a cluster fudge patchwork run by EMT basics under the direction of a regional MD that signs off on what meds they can carry and administer on who.

Of course, no argument from me there.  Also, ER training.


See - that's just the kind of thing that you could talk with them about.   


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Easily half our medical issue is actually legal because the majority of LTFA are younger making education access a huge issue. This isn't a Gen X or above crisis. The result are allergists (and by extension or in conjunction with psychologists) who don't stay in their lane no matter how much worse they make the road for us. If a board certified allergist is required so should a advocacy liaison from the state's NDRN office to offset the legal void allergists try to fill.

"Playing Lawyer Online – Be Wary of Non-Lawyers Bearing Legal Advice"
http://allergylawproject.com/2015/09/21/playing-lawyer-online-be-wary-of-non-lawyers-bearing-legal-advice/

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"Current Topics in Food Allergy Law"
http://community.kidswithfoodallergies.org/blog/current-topics-in-food-allergy-law-video-and-resources

Kids With Food Allergies (KFA), a division of the Asthma and Allergy Foundation of America, hosted a webinar on December 1, 2015 called Current Topics in Food Allergy Law. Our webinar featured the Allergy Law Project.

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"Trust and Food Allergies"
https://ohmahdeehness.wordpress.com/2016/05/06/trust-and-food-allergies/

As I contemplate the situation a few things converge – food allergy awareness week, whether I'm quick to discount lay advice online, and community generated parenting advice.

a friend has made some very cogent points about a concept floated in an ALP post where we discussed non-lawyers dispensing legal advice.  She cautioned me that in law, medicine, and the like, we can't discount the power of community information shared by informed individuals who have lived a given scenario.

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BTW, I think this "trust" topic is really interesting.


I'll link this ...

"How to trust intelligently"
By Onora O'Neill
http://blog.ted.com/how-to-trust-intelligently/

Trust requires an intelligent judgement of trustworthiness. So those who want others' trust have to do two things. First, they have to be trustworthy, which requires competence, honesty and reliability. Second, they have to provide intelligible evidence that they are trustworthy, enabling others to judge intelligently where they should place or refuse their trust.

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Vulnerability and Trustworthiness
Polestars of Professionalism in Healthcare
DAVID BARNARD
https://www.academy-professionalism.org/PDF/David_Barnard_Vulnerability_and_Trustworthiness.pdf

Welie insists that the hallmark of professionalism is to be deserving of the trust placed in the professional by the vulnerable, dependent patient

Trust, then, on this first approximation, is accepted vulnerability to another's possible but not expected ill will (or lack of good will) toward one

Therefore, in addition to the commitment to cultivating attitudes and behaviors that embody trustworthiness, a patient-based understanding of professionalism would also include the commitment to actually gaining a patient's or family's trust by learning, through individualized dialogue, the conditions that would win their justified trust, given their particular history and social situation.

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Re: Bias

I think many patients no longer feel that there is enough psychological safety to talk about internet issues with their docs ... too many are getting labeled difficult, negative notes are being put in medical records, sometimes the docs complain about those pts online, medical care can be impacted.  The doc-pt relationship should be a psychologically safe place.

There is a certain trust involved when a pt tells a doc something in confidence.  Once that trust is lost, it is really difficult to get back.

Patients are still going to go online, but many probably will choose not to talk about it with their docs.  Online stuff may in fact be part of what influences their medical decision making, but many pts will just keep that to themselves rather than talking about it with their doc and risk that doc getting offended, annoyed, and/or angry.  I used to be open about my thought process concerning medical decisions with my docs ... now I often don't let them fully in.

Re: Bias

"Poet and Philosopher David Whyte on Anger, Forgiveness, and What Maturity Really Means"
https://www.brainpickings.org/2015/05/15/david-whyte-consolations-anger-forgiveness-maturity/

The wounded self may be the part of us incapable of forgetting, and perhaps, not actually meant to forget, as if, like the foundational dynamics of the physiological immune system our psychological defenses must remember and organize against any future attacks — after all, the identity of the one who must forgive is actually founded on the very fact of having been wounded.

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"Philosopher Martha Nussbaum on Anger, Forgiveness, the Emotional Machinery of Trust, and the Only Fruitful Response to Betrayal in Intimate Relationships"
https://www.brainpickings.org/2016/05/03/martha-nussbaum-anger-and-forgiveness/

Trust, by contrast, involves opening oneself to the possibility of betrayal, hence to a very deep form of harm. It means relaxing the self-protective strategies with which we usually go through life, attaching great importance to actions by the other over which one has little control.

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In patient communities like this, it's really interesting to think about how trust happens ... when I first started out online, I never thought that I would form such strong bonds or trust so much ... people named CMdeux or Ninja or Boo, etc. ... and on the other hand, sometimes those with credentials like MD have let me down or have given me what I consider (maybe I'm wrong) to be bad advice.

Now my reminder - find yourself a good allergist and get your medical advice from the doc ...if you don't trust a doc, find another doc that you do trust ... there is a lot of dangerous info on the Internet.



Let me link again ...

Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy

What I believe is that something has changed.  Many patients are not passive anymore.  We connect with each other, we share our stories with one another, we build communities like this one at FAS.

I think that a lot of online allergists have good intentions ... guiding patients to official respected support groups ... trying to keep them away from bad internet info where anybody can say anything ... it's just that I don't see small groups like ours going away ... people are going to connect with those they feel a connection with ... I got something from this group that I didn't feel anywhere else. 

Even though food allergy issues don't have a big impact on our life anymore, my mind keeps playing with certain topics ...

I adore that Six Biases paper by Trisha Greenhalgh ... remember all that google-bias hypothesis stuff, the "epistemic injustice", & this:

Herein lies a paradox: clinician-researchers are building an experimental science of how they can intervene in patients' illnesses [84], while patients themselves are building collaborative communities aimed at supporting and informing one another [80–83]. Hence, EBM's accumulating body of (explicit, research-based) knowledge and the (informal, tacit, and socially shared) knowledge actually being used by people managing their condition are developing separately rather than in dialogue with one another.

This. So much. 

If I were an academic, this is the paper that I would have written ... I have experienced so much of what she wrote about.  To me, this is where the exciting stuff is at ... that gap, the potential for better integrating the scientific literature and the unique knowledge that groups like ours hold.   

Same theme ... integrating FA legal expertise w/places like FAS ...

So interesting, these topics/ideas are to me.

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"You get to know the people and whether they're talking sense or not": Negotiating trust on health-related forums
Ellen Brady, Julia Segar, Caroline Sanders
http://www.sciencedirect.com/science/article/pii/S0277953616303136

This suggests that notions of credibility and legitimacy online are not fixed and can evolve depending on the constitution of a group. As forum members establish legitimacy and authority, they become part of a community. As such, they influence and are influenced by group norms (Smithson et al., 2011). In turn, the community constructs the definition of acceptable discourse and reinforces the authority of individual writers (Galegher et al., 1998). In order to explore these notions in relation to LTCs, it is necessary to give in-depth consideration to the nature of forum usage by specific communities and to examine how trust is determined and negotiated.

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This post doesn't feel complete without talking about Robyn O'Brien since she was mentioned in Homa's post.  This is not an attack on her as a person, but critically looking at some of what she says ... & btw, none of us is perfect ... if anybody has criticism of FA stuff that I have posted about, I am very open to hearing that criticism ... it is likely that some stuff I've posted about is not correct or could be improved.

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Tweeted by @AllergyKidsDoc

"We are not saying that correlation is causation" That's exactly what you're saying. Without evidence, I might add.

about

Tweeted by @foodawakenings

Food Allergies in America: A life threatening allergic reaction sends someone to the ER once every 3 minutes. robynobrien.com/food-allergies...

"A Growing Epidemic: Food Allergies in America"
https://robynobrien.com/food-allergies-in-america/

The potential of genetically engineered foods to cause allergic reactions is a big reason for opposition to these crops.

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Tweeted by @jennysplitter

"Science Is My Scaffolding: Why I Won't Share That Robyn O'Brien Post"
http://groundedparents.com/2016/05/04/dont-share-robyn-obrien-posts/?utm_content=buffer4cb67&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer

reference to O'Brien's keynote address to a food allergy blogger conference in which she called on food allergy families to be the scaffolding and support we so desperately need.

Unfounded fears about GMOs and "toxins" won't get us any closer to understanding food allergies. The last thing we need is misinformation and fear. Our support for each other should be grounded in science.

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Here's our FAS GMO thread

GMO

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Re: Bias

That happens because the TRUTH is most important. 

Science is all about second, third, fourth, and fifth opinions.  Evidence-based medicine needs to be, too, if it seeks better truth with greater efficiency.  That's where I think that most medical practice still errs.  It hopes for fewer human beings to be involved in the interests of "efficiency." 

Hubris, that.  Science is the most efficient truth-seeking mechanism that human beings have ever devised.  And it REQUIRES multiple participants, because each of them comes at a problem with different biases, previous experience, etc.  You can't skip that step and have it work.

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Just some random thoughts ...

Is it right/ethical for orgs w/ med adv boards like FARE to sponsor events like the Food Allergy Blogger conference if they have speakers like O'Brien who advocate FA views that docs do not see as backed by scientific evidence?

The Internet is open ... info is not just going to flow from top-down (docs to patients) anymore.  How do we maximize the good in this (allowing patients to share stories, to be involved in research, to critically challenge the expert narrative in a legitimate way in some cases, giving patient priorities greater weight at the patient orgs, letting patients benefit the community with their unique knowledge & skills) while at the same time minimizing the negatives (pseudoscience, fear, dangerous advice, etc.) ....

There is a balance to be had & I don't think we as a community have entirely figured these issues out yet.

[twinturbo]

Even if we're informed patients don't you think we're PITAs? Remember John the Internet EMT? The one who was probably a noob basic?

[ajasfolks2]

Yes to the ER and EMT training . . . but I gotta wonder if the docs themselves are better trained in epi use now?  Remember the study showing how few docs really knew how to use?

Maybe they could repeat that study -- a joint with Epi and AuviQ.  Make the docs use one/either/both and time them.

[LinksEtc]

No doubt we can be PITAs, but it wouldn't be about overstepping into their territory.  We are patients, we are not trying to be docs ... but open communication between us about general stuff I think would have real benefits.

[ajasfolks2]

AND make them admin to an Aspie boy refusing to get epi'd.