Mi septembre, la nouvelle tombe. "le Mycophénolate Mofétil (Cellcept) est exclu du dispositif "tiers payant contre générique"".
Résultat du travail de "Renaloo", association de patients qui a su mobiliser son réseau et négocier avec l'ANSM et la CNAMTS...
C'est une première....mais ce genre de situation va probablement devenir de plus en plus courante.
A l'occasion de la WebTV que j'ai eu l'honneur d'animer sur BEPATIENT.fr : "Carte blanche" donnée aux "E Patientes" ( http://sco.lt/8VRpi5 ), j'ai pris le temps de compiler un certain nombre d'informations sur ce qu'on appelle les "E Patients" et ce mouvement connu désormais dans la santé comme le "Patient Empowerment".
On sait que la santé est un sujet très présent sur le web.
Avec plus de 30% de la population mondiale connectée (plus de 71% dans les pays développés), le web 2.0 compte maintenant plus de 100 000 000 de sites et plus d'un milliard d'utilisateurs .
La santé 2.0 en chiffres c'est plus parlant. Cela représente :
- 1/3 des recherches faites sur Google
- 20% des discussion dans les réseaux sociaux
Ce qui fait de la santé le second sujet le plus recherché/discuté sur le net.
E PATIENT : UN PHENOMENE AMERICAIN?
On peut penser que ce mouvement des E Patients est un phénomène anglo-saxon pour ne pas dire américain.
Le plus connu d'entre eux, E Patient DAVE (Dave de Bronkart), sexagénaire américain, est devenu le "fer de lance" de ce mouvement.
Diagnostiqué avec un cancer du rein en 2006, les médecins le laissent sans espoir de traitement. Alors Dave s'adresse au web, échange avec d'autres patients et apprend qu'il y a un traitement envisageable mais proposé uniquement par certains médecins.
Rentré en rémission, il décide de s'appuyer sur son expérience pour promouvoir une approche nouvelle de la santé. (une interview intéressante de E Patient Dave http://www.myfoxmaine.com/story/19595242/e-patient-dave-health-activist)
Le Patient EMPOWERMENT est né avec les différente définitions que l'on peut donner aux E Patients (bien résumé et étayé sur wikipedia http://bit.ly/GShDVf ).
Parmi d'autres celle qui fait l'unanimité est la définition élaborée par Tom Ferguson qui identifie les e-patients comme des individus équipés, capables, responsables et impliqués (equipped, enabled, empowered, engaged) dans leur état de santé et dans les décisions qui lui afférent.
L'étude américaine de PEW INTERNET (Social life of health information ( http://bit.ly/SxW4PK ) résume bien l'ampleur de ce phénomène aux Etats Unis.
- 80% des internautes ont cherché des informations santé sur le web
- 1/3 s'en sert pour évaluer et choisir leur médecin
- 60% reconnaissent que cela a affecté leur décision sur comment traiter leur pathologie
- 50% demandent alors un second avis médical après ces recherches
- 30% s'en servent pour décider d'aller consulter ou pas
- 30% l'utilisent pour comparer les options de prescription de traitement
Aux Etats Unis ou les professionnels de santé sont équipés à 80% de smartphones et à 60% d'IPAD, 40% d'entre eux reconnaissent aller consulter de l'information on-line PENDANT la consultation et 50% recommandent à leurs patients des sites à consulter (Manhattan Research)
Le mouvement est encore plus évident à la lecture de l'étude conduite par l'université californienne DAVIS (UC DAVIS Mai 2012 http://bit.ly/SxW4PS ) "The prepared patient" qui met en avant les attentes des E Patients :
- se tenir informé
- jouer un rôle actif dans ses soins
- franchir une étape difficile sur une question de santé
Cela pour autant qu'il soit question de défiance vis à vis des professionnels de santé
Par ailleurs, les patients reconnaissent qu'internet n'est pas la seule source d'information ; les amis, les émissions de télé, les ouvrages/revues/magazines.. sont aussi cités. D'ou l'importance de garder une présence sur les médias "off-line".
Dans cette étude, enfin, il est précisé que :
- 70% des patients discutent avec leurs médecins de l'information collectée.
- 40% l'impriment afin d'en parler avec leur médecin
- 50% déclarent suite à cette recherche avoir au moins une question à poser à leur médecin.
ET EN EUROPE ?
En Europe, les études et la prise de conscience se développent.
Dans son étude "Citizen Health Europe", Manhattan Research dresse en 2010 un état des lieux précis de la situation.
Premier constat, il y aurait 76 millions de E Patients en Europe !!
Parmi les motivations qui induisent à s'adresser au web les 3000 patients interrogés dans les 5 plus gros pays européens, on retrouve :
- discuter/rechercher les informations obtenues lors de la consultation
- utiliser internet pour rechercher des symptômes/diagnostic (le fameux phénomène "Dr Google")
- challenger le diagnostic
- demander un changement de traitement
L'étude conduite en 2010 par IMR international "Europe Social Media in healthcare" quant à elle précise les motivations des internautes pour discuter de la santé sur les réseaux sociaux.
- 32% veulent trouver une expérience sur le traitement qu'ils prennent
- 31% pour trouver de l'expérience sur la maladie qu'ils ont
- 16% pour partager de l'expérience/maladie
- 13% pour partager de l'expérience/traitement
EN FRANCE ?
C'est ainsi qu'en France l'étude IPSOS "Public affair 2010" nous révèle que que la santé est la 7ème raison de consulter le web (en France).
Et lorsque l'on regarde les sites consultés/moyens utilisés (Etude GFK 2010 http://bit.ly/PxRc0c ) :
- 81% passent par les moteurs de recherche
- 68% par des sites spécialisés type "Doctissimo" ou "AZ Santé"
- 40% vont sur les forums de discussion
- 38% sur les encyclopédies libres (Wikipédia, ..)
Par contre :
- seuls 12% vont sur les sites de labo
- 11% sur des blogs médecins
- 10% sur des blogs de patients
- 10% sur les sites d'associations de patients
- 8% sur les réseaux sociaux
Quant on sait qu'un site comme Doctissimo génère environ 8 à 10 millions de visiteurs uniques par mois, le Ministère de la santé a décidé face à ce phénomène de conduire une étude avec des sociologues en 2010.
La conclusion est sans appel sur le sujet :
Les auteurs précisent qu'il s'agit là de la "CONSTRUCTION D'UN SAVOIR PROFANE PRATIQUE, COMPLEMENTAIRE DU SAVOIR EXPERT DES MEDECINS".
Le phénomène est tel que le CNOM (Conseil National de l'Ordre des médecins) a réagit en conduisant cette enquête avec IPSOS ( http://bit.ly/PjIRtd ) qui nous donne les chiffres pour la France :
- 71% des internautes français recherchent des informations santé sur le web
- 7 internautes sur 10 qui font ces recherches ne font pas la différence entre sites certifiés ou non
- 62% des français consulteraient le site/blog de leur médecins si celui-ci en avait un
- 34% des internautes qui cherchent sur le net disent en parler avec leur médecin (le deux tiers des patients ne discutent pas avec leur médecins des informations repérées en ligne)
Cela a d'ailleurs conduit le CNOM a inciter sur son site les médecins à se pencher sur ce phénomène pour :
- Développer le conseil du médecin dans la recherche d’information santé.
- Faire d’Internet un outil au service de la relation médecins-patients
- Créer un label ordinal pour les sites publiés par des médecins.
ET ALORS ?
And so what??
Comment prendre en compte cette évolution parmi les acteurs du système de santé?
Et oui.. pas facile quand notre culture et notre cadre réglementaire ne nous permettent pas d'avoir un échange directe avec les patients.
Pas facile de passer d'une cible de 200 000 médecins (grosso modo) à près de 45 millions d'individus (juste pour la France)
Pas facile de passer d'un mix promo ou la visite médicale est omniprésente (près de 60% du budget) et le digital quasi absent (moins de 1%)
C'est le "business model" en entier qu'il faut repenser et les organisations qui vont avec....
L'orientation client ne doit plus être une intention... mais devenir une réalité du quotidien...avec la difficulté, certes majeure, de définir ce CLIENT.
Prescripteurs? Dispensateurs? Payeur? Patient?...Lequel choisir? Y en a t il qu'un? ou plusieurs? quel poids donner à chacun?
J'entends souvent, et à juste titre, dire par les acteurs (laboratoires, grossistes, pharmaciens,..) que le Patient est "AU COEUR DE NOS DÉMARCHES"...
Pour les marketeurs (futurs "chef de clients"?? :-)), cela doit se traduire par une cartographie du parcours client...peut être effectivement tournée autour de ce parcours.
Prenons le pari qu'à chaque étape du parcours patient (prévention, symptôme diagnostique annonce,analyses, prescription, dispensation, observance, suivi...que sais je?? selon les pathologies) nous repensons nos démarches marketing en mettent au coeur le patient et la notion de service client et de valeur ajoutée...
Et pourquoi ne pas considérer désormais nos clients historiques ou les nouveaux acteurs comme des partenaires ayant eux aussi pour client le Patient?
Peut être faudrait il dans un premier temps accompagner ce changement dans la relation médecin/patient?
Pour conclure je reprendrais un post récent d'Alex Butler, PDG de "The social Moon", gourou du digital pharma et ancien de J&J, qui s'interrogeait sur la pertinence de continuer à utiliser le terme de E-Patient.
En effet, à partir du moment ou tous les patients ou presque, vont sur le net peut être faut il juste les appeler PATIENTS...au même titre qu'on ne précise plus le terme 'numérique" quant on parle d'appareil photo...
Ça y est Pharma... tu en sais un peu plus sur les E Patients.
J'espère que cela t'aura intéressé.
Pour finir, je citerais Len Starnes, autre gourou du digital pharma et ex Bayer...qui écrivait dans une présentation destinée à la pharma:
"Fish where the fishes are"
(Peches là ou sont les poissons)
A bon entendeur
Si vous aviez tous les pouvoirs, quelle serait votre toute première réforme ? C'est la question qu'Egora a posé à plusieurs personnalités du monde de la santé. Ancien président et actuel secrétaire général délégué du Collectif interassociatif sur la santé (CISS), Christian Saout s'est prêté à l'exercice. Celui qui a remis lundi un rapport à Marisol Touraine sur l'expérimentation d'actions d'accompagnement des patients, propose de mettre en place des Etats généraux de la santé.
New Report on Social Media and the Patient Experience via TCU and Expio Consulting
Currently over 55% of patients engage with some form of social media. This report proves that number will continue to rise. 39% of respondents say they share medical information using social media. Contrary to the fears of many executives, patients tend to share positive experiences on social media. This report found though it’s true that patients also do share bad experiences, it’s far less common.
Patients want to share their stories. And prospective patients want to read stories. Extended families and networks want to read and see these stories as they stay attuned to a loved one’s health issues. Here are a few key questions to consider:
We found patients expect to reach out to providers through social media. 70% expect a response within 24 hours. This has major implications for patient care.
The role of new mobile applications and technology continues to grow exponentially. With this growth comes a greater need and opportunity for patient education and care. How – or how well – are HCPs responding?
We teamed up with TCU’s Neeley School of Business to investigate these questions. Our goal is to provide health care leaders a useful perspective with actionable strategies.
The healthcare industry in the United States is going through a major transformation and is becoming much more consumer friendly. This process of “consumerization” will drive healthcare executives to pay close attention to what patients feel and think about healthcare organizations and services – something the industry has ignored for decades. This trend should continue and be accelerated as we all start paying more out of pocket for healthcare services.
Going forward, the success of healthcare organizations will depend on internalizing patient sentiment insights into everyday decision-making, just as it is for nearly every other industry. By its recent introduction of the “Health Star Rating” system  for hospitals, the Centers for Medicare and Medicaid Services (CMS) sent a strong and clear signal about the huge transformation of the patient experience and associated ratings, and its impact on the healthcare industry – an impact the industry can no longer ignore.
Patient Experience: An Overview
Patients today provide valuable information about their personal experiences with hospitals, clinics, doctors and nursing staff. Patients share their experiences in a variety of mediums, e.g., social media, patient discussion forums and surveys. In addition, key insights are gathered when patients engage with care delivery organizations via call centers and interactive in-room TV apps. When we bring all of these different data sets together along with key hospital objective metrics and CMS data, the insights derived can have a huge impact on the decisions that today’s healthcare executives have to make. These “narrative data assets” provide new perspectives and complete story lines never before available to the healthcare industry.
This article explains new methods on how providers can implement programs using big data and predictive analytics to improve patient experiences while improving providers’ survey scores. Based on work done with a number of leading healthcare providers over the last three years, we will present examples on how insights can be generated and used to predict specific improvements around reduction of re-admission rates, improving Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) scores and reducing patient churn. When patient experiences are heard, understood and acted upon in a holistic way, healthcare organizations can dramatically improve their top and bottom lines while addressing quality of care.
Healthcare Data Landscape
The data landscape – a key to understanding patient behaviors – has dramatically changed over the last few years. As shown in Figure 1, narrative data – ready for processing – is now available from patients before, during and after an encounter.
Figure 1: Narrative data is available from patients before, during and after an encounter.
The medium through which patients are communicating during various touch points has to be understood holistically in order to generate insights to act upon. A holistic program gathers patient data from hospital systems as well as third-party surveys and social websites. Using the new data landscape that is available, a set of patient experience indicators can be generated as shown in Figure 2. Figure 3 shows an example of some of the broader data sources, in terms of both variety and volume, that would enable comprehensive insight into patients when looked at holistically.
Figure 2: A set of patient experience indicators can be generated from today’s data landscape.
Figure 3: Examples of broader data sources that could enable comprehensive insight into patients.
Insights from Data
Once the new data landscape explained above is accessed and understood, we have a wealth of information available to analyze. For example, the narratives from social media sites and surveys can be analyzed using Bayesian interference  to find out emotional attachment of patients to a hospital’s brand and services. A typical patient encounter may leave the patient in an overall satisfied state, but they might have felt “anger” at the billing errors. Advanced data science algorithms can analyze this range of emotions.
Similarly, the key topics that patients are discussing about the hospital and its services can be honed in using data science methods. A standard rating algorithm can be built and applied to rate the overall satisfaction of patients across the mediums used to communicate.
It is important for the providers to understand the key topics of interest among their patient segments. Are the patients thinking about ease of appointments, facilities at the hospital, parking lots or about billing errors and nurses’ communication? Which of these topics have negative connotation and which ones have positive inclination?
Advanced analytics, driven by data science, can now answer these questions with reasonable certainty. Identifying the trending of “hot” topics over time, and associating a rating to these topics, will enable executives to make key decisions within their care-delivery organizations. Hot “green” (positive sentiment) topics could be a key tool for marketing folks, while a hot “red” (negative sentiment) topic could trigger a possible intervention program. Understanding these topics in terms of the same Health Star Rating system being promoted by the CMS makes it easier to analyze and leverage such insights.
Hospitals are constantly looking at continuous improvement to enhance quality of care. Patient sentiment input is crucial to understanding the overall key performance indicators (KPI) that a hospital is tracking. Mapping from key topics of interest for patient segments to the KPIs is needed to understand the value of patient sentiment in proper context.
For example, we can look at patient churn as a KPI and analyze the impact of sentiment on potential patient churn. While this is a fairly standard practice across other industries, the healthcare industry has largely ignored it. Data platforms with correct, proactively linked intervention programs have the potential to reduce patient churn while improving quality of care, outcomes and revenue.
The current survey-based approaches used by hospitals provide a certain level of insights but have very long cycle time for actions. They typically take about eight to 12 weeks to send back the insights, and even then they fail to paint the complete picture. The approach explained here is more comprehensive and faster, thus enabling hospitals to implement intervention programs when they are needed. Furthermore, this approach can also be used to monitor and track programs initiated to impact certain KPIs.
Insights to Intervention Programs
We have seen some methods that hospitals can use to track the leading indicators such as patient sentiment from narrative data assets and analyzing their impact on few of the key performance indicators. As noted, the approach presented here is more comprehensive and faster, thus enabling hospitals to generate insights from patient experiences across touch-points.
The real value of the insights from these narrative data assets is when hospitals use them to define intervention programs, thus potentially generating a desired state of outcomes. Using data science methods, a model can be built that can analyze the impact of changing the set of forcing variables on the outcome of a selected target value. For example, a key set of variables that are forcing a patient to switch hospitals can be identified from the test data, and the model can predict the outcome of patient switch based on changing values.
Depending on the hospital, these influencing variables can be “admission process,” “billing errors,” “staff responsiveness,” etc. The model can describe the most probable variables that are causing the churn based on the data. Hospital management can change the values of these variables to see the impact of the potential churn, and a desired state can be reached with a few predictive iterations.
Once a desired state is achieved, the values of influencing variables and the sum of budget requirements to arrive at those values will then become the starting point to define an intervention program that the hospital can plan and execute. Further, the advanced machine-learning capabilities available today also enable intervention programs to be self-learning. For example, it is feasible for a business unit to define an aspirational state with respect to their patient population and let the system predict a best set of operating parameters to achieve those objectives within time and budget constraints .
As healthcare organizations brace themselves for the major consumerization wave, they can feel confident and comforted knowing that technology solutions have evolved and are available to guide and assist them in this incredible transformation of the data landscape.
Ever asked the Internet what your symptoms mean and gotten a response that seemed wacky or totally off base? It's not your imagination.In an audit that is believed to be the first of its kind, Harvard Medical School researchers have tested 23 online “symptom checkers” — run by brand names such as the Mayo Clinic, the American Academy of Pediatrics and WebMD, as well as lesser-knowns such as Symptomate — and found that, though the programs varied widely in accuracy of diagnoses and triage advice, as a whole they were astonishingly inaccurate. Symptom checkers provided the correct diagnosis first in only 34 percent of cases, and within the first three diagnoses 51 percent of the time.
I recently hosted a Google Hangout on Air entitled Patient Reviews of Physicians: The Wisdom of the Crowd? (presented by The Harlow Group LLC in association with The Society for Participatory Medicine).
I spoke with Niam Yaraghi (Center for Technology Innovation, The Brookings Institution) and Casey Quinlan (Mighty Casey Media) following their interesting back-and-forth online on the question of whether and how patient reviews of physicians can add value. Please take a look at the posts that preceded the hangout. Here are the initial post and reaction:Niam’s post and Casey’s post – as well as Niam’s follow up post and Casey’s follow up post.
Please feel free to watch the Hangout on Air. Further below, I’ve shared a version of my introduction to the hangout, as well as some of the takeaways suggested by Niam and Casey (and taken away by me). We need your help refining these takeaways in the comments.
The challenge to the community is manifold. We need to do a better job of identifying:
- Types of cases in which the patient is an expert in the clinical sense (where we can rely on patient assessments of quality of clinical care)
- Useful measures (for both process and outcome)
- Better approaches to clarifying patient preferences (because we can’t score a process or an outcome if we don’t know what to score it against)
- On a related note, checklists for patients to use in making the most of encounters with the health care system
More on these points below.
The whole thing was kicked off by a post of Niam’s that included this passage:
Since patients do not have the medical expertise to judge the quality of physicians’ decisions in the short run and are neither capable of evaluating the outcomes of such decisions in the long run, their feedback would be limited to their immediate interaction with medical providers and their staff members. Instead of the quality of the medical services, patients would evaluate the bedside manners of physicians, decor of their offices and demeanor of their staff. This is why a physician’s online rating is not a valid measure of his or her medical expertise.
This, shall we say, inflamed Casey’s ire, as an engaged patient and patient activist. She noted that in many cases a patient with a chronic condition is in fact more expert in her condition — and certainly in the ins and outs of what works or doesn’t work for them in managing her condition — than a clinician new to the case. There is an oft-cited statistic that it takes 17 years for new medical science to filter from journal article to accepted everyday practice. Nobody wants to wait 17 years for her health care to catch up with the state of the art. An engaged patient is more likely to do the research, do the legwork, and surface ideas directly relevant to her case. Some clinicians, of course, are open to the notion that they can “Let Patients Help.”
Niam followed up with another post, noting that while some patients may be experts on their own conditions, others may not be — thus posing, essentially, the question of “how do I evaluate the reviewer?” This is a problem that should be familiar to any one of us who shops online for anything. The key issue Niam raised in his follow-up was this, though: An instrument is valid when it measures what it was intended to measure. He noted some studies that concluded that patient satisfaction is not necessarily tied to improved clinical outcomes.
(As an aside, there was a post on The Health Care Blog picking up on Niam’s perspective on patient reviews on Yelp, and showing that Yelp reviews are highly positively correlated with CAHPS results. With all due respect to the author, since both the reviews and the CAHPS surveys are largely based on patient experience — and not clinical quality process or outcome measures — the correlation does not seem to undercut Niam’s point. It does not address the broader question of whether a patient can be an expert on his or her own condition. The post does, however, point up the fact that physician-level predictive quality measures are as rare as hen’s teeth. This is in fact a problem that would be great to try and dig into.)
There are a whole lot of things that get measured and reported that are not necessarily tied to improved clinical outcomes — consider the reaction of top-tier medical centers every time some ranking is published showing that they are lower in quality than another provider, which is usually some variation on the following theme: “We serve sicker patients, so the results are skewed.”
Casey, in her follow-up post, confirmed that she is not suggesting that patient reviews should be the sole metric guiding choice of clinician … so I think she and Niam have at least some area of agreement.
What we need are metrics to guide rational choice of provider. Going with one’s gut is perhaps an imperfect approach, though for many of us it often seems to be the best we can manage. We certainly have a lot of measures and a lot of data on these measures rattling around out there — but they don’t necessarily enable us to better answer the question: What doctor should I go to?
So, back to our questions, as outlined above. I’m seeding the post with a few stabs at answers, but I am throwing the questions open to comment — please pile on.
1. What are some types of cases in which the patient is an expert in the clinical sense (where we can rely on patient assessments of quality of clinical care)?
A couple of examples come to mind:
- The patient with a chronic condition who is more knowledgeable about her condition and the latest research regarding therapies and other approaches to managing the condition than is her new doctor.
- The patient whose condition had been misdiagnosed (and therefore effectively left untreated) by three doctors. Doctor #4 correctly diagnoses and treats the condition.
Each of the patients in these cases is qualified to review her doctor(s) not just in terms of bedside manner, but in terms of clinical quality of care. I would appreciate the wisdom of the crowd in identifying additional “cases” such as these. With a bank of such cases at hand we may be better able to build a framework for clinical quality ratings by patients.
2. What are some useful process measures to use?
There may be some value in standardizing the measures we use in reviewing physicians, even from the process perspective, or even the domains to consider. Niam suggested the following domains to consider:
- Quality of communication between patient and care provider
- Quality of teamwork between the members of medical team as observed by patient
- Following basic rules of infection control
- Reviewing prior medical records of patients
- Following up with patient and making sure that he/she has completely understood medical orders and can comply with them
- Listening to patients and addressing their concerns during the visits
What other measures like these should we be considering? These are perhaps a step up from the “I like my doctor because she is polite and on time” sort of reviews, but: Is there a correlation between good rankings on these metrics and good outcomes? I am on a life-long search for a handful of good measures that would prove to be predictive of everything else that matters; I am not convinced that these take us too far down the path in that direction.
3. What are useful outcome measures to use, and who is able to rate a clinician according to these measures?
The classic example of the disconnect between a clinician’s view of quality and the patient’s is the old saw about the orthopedic surgeon who pronounced a leg healed, ignoring the fact that the patient had died. (Sorry, orthopedic surgeons; it’s just a hypothetical example ….)
- Patient satisfaction with the outcome
In the end, the only metric that matters is patient satisfaction. Why? Because care must be delivered to address patient needs, patient preferences. The optimal treatment for two patients with similar clinical presentations may be entirely different, based on family issues and personal preferences (for example, treating a terminal illness differently for a patient who wants to walk his daughter down the aisle in six months vs. one who wants only to have a good death).
4. What combined process and outcome measures should we be using to rate quality?
The desired outcome ought to be determined by taking patient desires and preferences into account. In many situations, success in achieving clinical goals will be largely determined by whether the patient has had sufficient voice in determining those goals. We need better approaches to clarifying patient preferences before embarking on courses of treatment. We can’t score the process or the outcome unless we know the patient’s views on the process and outcome. (Consider the work of the Dartmouth Preference Lab). A basic step on the way to clarifying these preferences is ensuring that patients are making the most of encounters with the health care system, which may be enabled in some situations by the use of checklists (here are two examples offered by Casey — one and two).
We have a tool that can be used to assess the level of a patient’s activation and engagement: thePatient Activation Measure. But of course that activated patient needs to engage with a receptive clinician. There ought to be a parallel tool that we could use to measure the clinician’s receptivity to and engagement with an activated patient — a tool that should include a measure that can identify the clinician who is able to activate a patient.
We may have veered slightly away from the narrow question of whether patients can rate providers in a useful way, and into the broader question of what might be the most useful set of quality measures for providers.
Bottom line: Any global assessment of provider quality must take into account care goals identified through an examination of patient preferences. Please help flesh out our thinking on this subject by adding your voice to the conversation.
A Brookings Institute economics expert and a patient advocate argued with each other last week during a live Google chat. They disagreed about the voices of patients, and how much these voices should count. Their debate is just one of hundreds going on as to how and where and when to register patient feedback in health care. The two of them had spent almost a week in barbed exchanges on Twitter, but were relatively kind to each other at the live chat.
Casey Quinlan is a prominent voice in social media who goes by the handle @MightyCasey on Twitter. She is a journalist, frequent testifier at conferences and hearings, and passionate advocate for open data that patients can access. She is also a survivor of breast cancer. Quinlan is a collaborator with researchers studying how to better incorporate patients into the design of health care systems.
The discussion between Quinlan and Yaraghi was moderated by David Harlow, and sponsored by both Harlow and the Society for Participatory Medicine. You can read Harlow’s blog about it here.
The two of them might never have met, except that Yaraghi wrote on a US News and World Report blog about his view of a credibility problem for patients commenting on doctors. “Patients are neither qualified nor capable of evaluating the quality of the medical services that they receive [italics mine],” he said. After the social media firestorm, he posted a subsequent blog softening and clarifying.
His first blog prompted Quinlan to write angrily that Yaraghi was discounting the most important people in the health care collaboration. She and dozens of others criticized Yaraghi, but one of the chief complaints that emerged from the discussion was that there aren’t many ways for patients to try to choose a health care provider. Even if Yelp reviews are flawed, they may be all that’s available to some consumers.
The gist of their Twitter tango is reflected in this exchange:
And then again here:
Casey also summarized the Twitter conversation on Storify.
What both Yaraghi and Quinlan eventually agreed is that patients need metrics about providers to help them evaluate and make choices.
Their debate just highlights the many parallel discussions going on about patients. You can get confused by the many different buzz words and phrases that describe these conversations. Two key hashtags to follow on Twitter are: #patientsincluded and #patientengagement. People like Quinlan belong to a group sometimes called “e-patients,” who are exquisitely savvy and well-read and share online resources with thousands of other patients via social media. Some of these patients testify at medical conferences and participate in collaborative projects trying to improve health care. Just one example, the DartmouthPreference Lab, explores how listening to patients more carefully may improve outcomes. There is also a non-profit research institute, the Patient-Centered Outcomes Research Institute, PCORI, dedicated to finding the most effective treatments and partnering with patients to design studies that will test them.
In his writing, Yaraghi makes the point that he does not mean to question the credibility of patients, but technically wants to point out that measuring patient satisfaction (with hospitals) has not correlated meaningfully with health outcomes. “According to this JAMA Surgery article,” he wrote, “patient satisfaction is correlated with neither quality of care nor hospital safety. These studies provide additional support for my argument that online reviews are measuring something other than clinical outcomes.”
What’s clear is that patients are standing up and shouting (and testifying and lobbying and advocating) to get a bigger voice in health care reforms. What is muddy is just how that’s going to work.
LE PLUS. En France, 30 à 50% des patients ne suivraient pas bien leur traitement. Problème : cette mauvaise observance coûte cher à notre système de santé. Alors que l'Inspection générale des affaires sociales doit rendre un rapport à ce sujet, les usagers du Collectif interassociatif sur la santé (CISS) s'inquiète d'une future télésurveillance des patients. Décryptage de son secrétaire général Daniel Carré.
In the growing shared economy, one centerpiece is people-powered health – co-creating, shared decision-making, and a greater appreciation for the impact of social on health. As we approach the mid-point of 2015, there are several signposts pointing to people-powered health/care.
FasterCures launched the Science of Patient Input Project, with the objective of getting the patient’s voice into clinical discovery and decision-making. This video describes the intent of the program and its potential for people-powered health and user/patient-centered drug design, beyond the pure clinical efficacy of therapies.
Les patients atteints de maladie chronique demandent à ce que l'humain et leur expérience soient davantage pris en compte dans leur prise en charge afin de "dépasser le terme d'observance pour lui préférer celui d'adhésion" et de développer la décision médicale partagée au coeur de la relation soignant/soigné, dans des recommandations issues d'une conférence citoyenne, présentées vendredi lors d'une conférence de presse.
When a young couple from Florida couldn't get their insurance company to pay for in-vitro fertilization, they turned to the Internet for help.
Using a crowd-funding website called Indiegogo, they set up a campaign to raise $5,000. Online contributions of more than $8,000 ultimately rolled in from friends, family and strangers. And now they have a baby.
That's the power of a crowd, says Slava Rubin, CEO of Indiegogo, based in San Francisco.
Crowd-funding has grown along with the Internet as people increasingly band together to support charities, raise money for movies and other projects — and now seek money to pay medical bills.
We recognize it's difficult for people to ask for help. ... But those able to talk about what their journey has been through their illness tend to be most effective.- Leonard Lee, head of communications for YouCaring
Indiegogo, which launched in 2008 to help filmmakers raise money online, has seen such a marked uptick in personal fundraising to pay for medical costs that it recently started Indiegogo Life — just for healthcare. There are a host of other medical crowd-funding sites such as GoFundMe and YouCaring — both of which also report huge increases in medical fundraising in the last two years.
Unlike more traditional methods, online campaigns allow fundraisers to reach people far beyond their immediate social network. "Here's a way to give to an individual — it might be someone you know or someone you've never met. You know what their need is and that your donation will go to meeting their exact need," says Leonard Lee, head of communications for YouCaring based in San Francisco.
"A lot of people who thought they had adequate insurance coverage find themselves in situations where insurance is not enough," he says.
Fundraisers launched through crowd-funding websites run the gamut of health conditions. Among some big successes:
• $800,000 for experimental treatment was raised in a campaign for a 24-year-old man diagnosed with leukemia.
• Nearly $267,000 was raised for a 26-year-old diagnosed with ALS to cover the cost of medical treatment and other expenses.
• More than $34,000 was collected to relieve the financial burden for the family of a 2-year-old diagnosed with stage 4 brain cancer.
Vanessa Hulme was leery of crowd-funding for herself. It was her sister who started a YouCaring campaign on her behalf.
"I was actually apprehensive about crowd-funding initially. I'm sort of the person who doesn't like to ask for help," says the 36-year-old self-employed singer from Reseda. She quickly came around.
As word of her online campaign spread through social media, friends, family and people Hulme had never met began donating.
Though many see crowd-funding sites as a godsend, others see their need as evidence of problems with the U.S. healthcare system.
"Most of the people who have medical bill problems" do so — even though they have insurance, says Karen Pollitz, senior fellow with the Kaiser Family Foundation.
Experts offer tips for launching a successful campaign.
Strong appeals include details people want to know. A clear, concise campaign description that makes it easy to understand who you are and why you're asking for money is key, says Kelsea Little, media director for GoFundMe, in San Diego.
"We recognize it's difficult for people to ask for help and talk about a very personal situation," Lee says. "But those able to talk about what their journey has been through their illness tend to be most effective," Lee says.
Profiles with pictures — even better, videos — tend to have greater success.
"People want to see the person behind the story and get a sense of who the person is, what their journey has been and who they are donating to," Lee says.
Create trust. Connecting your profile to a Facebook account helps verify you are who you say you are, and where the money is going.
"It's important to create trust, and the best way to do that is to connect with Facebook via your profile, so that people can then see how they're connected to you through friends. Or, so that they can see you're a real person," Rubin says.
Those interested in donating can avoid fraud by paying close attention to the details of a person's story and by donating on sites that scan their campaigns for potential fraud.
Watch for fees. Many crowd-funding sites charge a percentage of each donation you receive.
GoFundMe and GiveForward for example, take 5% of each donation and an additional 3% for a payment processing fee.
Indiegogo Life and YouCaring do not take a percentage of the funds you raise, though donors pay a credit card transaction fee.
Hulme says crowd-funding has helped her make a dent in the financial burden caused by her illness. But she got far more from her fundraising campaign than just money, she says.
"If I had not been willing to take a leap of faith, then I would have never known how many people in the community were willing to help," she says.
"When I could do nothing else but hold my head up, and my fiancé would say, 'It looks like you got another $20 donation,' I will tell you, it sounds silly, but that's the kind of thing that keeps you going."
[Université d'été d'e-santé de Castres] Malgré un taux d'équipement relativement élevé du côté des patients mais aussi des médecins, les applications médicales rencontrent aujourd'hui plus de succès auprès des malades que des professionnels de la santé.
Alors que les applications médicales sont en pleine explosion et seront un domaine clé de l'e-santé en 2015, quel est le réel usage qu'en font les patients atteints de maladies chroniques ? C'est l'interrogation soulevée par l'étude « Santé mobile et connectée : usages, attitudes et attentes des malades chroniques », réalisée par l'association Lab E-santé en février et mars 2015.
L'enquête, réalisée auprès de 2 226 malades chroniques, recensait des malades atteints de toutes sortes de pathologies, qu'il s'agisse de diabète (24 %), d'hypertension (8 %) ou encore de dérèglement thyroïdien (8 %). Des malades chroniques équipés en matériel puisque 71 % possèdent un smartphone et/ou une tablette, (27 % smartphone, 12 % tablette, 31,8 % les deux), un taux fortement élevé mais qui pourtant ne favorise pas le téléchargement d'applications puisque seulement 1 malade sur 5 a déjà effectué ce type d'opération. Un engouement somme toute assez faible qui s'explique par le fait que les malades ne sont pas familiers avec le concept d'application à 31 %, une inconnue qui traduit un déficit de pédagogie. 25 % des malades n'en voient purement et simplement pas l'utilité. Alors comment convaincre les patients de l'intérêt des applications mobiles ? Parmi ceux qui n'ont jamais téléchargé une application, 52 % seraient prêts à changer d'avis si leur médecin le leur conseillait ou si une personne touchée par la même maladie leur recommandait (24 %). Malgré ces chiffres, 27 % ne s'estiment pas prêts à télécharger de tels outils.