Patient Self Management
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Patient Self Management
patient self management, compliance, adherence, patient coach, patient monitoring, patient empowerment, shared decision making, patient education, patient counseling, participatory care
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Patients will decide how they spend NHS money | News | The Times

Patients will decide how they spend NHS money | News | The Times | Patient Self Management | Scoop.it

Hundreds of thousands of people will receive personal allowances of NHS cash to organise their own care in proposals that have already sparked controversy.

Ministers say the changes will “put power back into the hands of patients” but critics insist there is little evidence that such “consumerism” would improve the NHS.

Far more people with mental health problems, dementia and physical and learning disabilities will have the right to select and pay for treatments they want. The money will be paid directly to them and can be spent on whatever that they think best helps to manage their condition, as long as a doctor agrees.

Veterans leaving the army and wheelchair users have also been promised the “personal health budgets” after complaints that care provided to these groups by the NHS is not good enough. Some such budgets run to tens of thousands of pounds.

The reforms will allow recipients to employ relatives or neighbours as carers, buy specific pieces of equipment, enrol in exercise classes or hire a personal assistant. The policy has been controversial in the past because such budgets have been spent on holidays, horse-riding lessons and aromatherapy.

At present 23,000 people have personal budgets in the NHS through a little-known initiative called NHS Continuing Healthcare, designed for those who need both social care and nursing. Now ministers want an “exponential” expansion of the right to have personal health budgets, taking the number up to 350,000.

 

See here, also to share your vote on the poll!  https://www.thetimes.co.uk/article/patients-will-decide-how-they-spend-nhs-money-78n752tdl

 

rob halkes's insight:

Gr8 to see the NHS is following an initiative already present in the Netherlands, popular known as the "patients backpack", actually: a "person's individual budget" (Dutch: persoonsgebonden budget).

Actually the idea is good, implementation and administration is key, and sometimes a lot "ado".
Dee the Times article here

Some Dutch reads about it:

Numbers of PGB in NL

What is PGB

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• BEING PATIENT-CENTRIC

• BEING PATIENT-CENTRIC | Patient Self Management | Scoop.it

A brand-new, evidence-based, self-evaluation toolkit to help pharma companies track their levels of patient-centricity ... analysing 2016-2017 feedback from: 2,000 patient groups worldwide, 50+ different medical specialties, 100+ countries, International, national, regional and local.

 

  • Patient groups describe 9 major attributes that contribute to the process of corporate patient-centricity.
  • Every one of the attributes is, in turn, shaped by numerous fundamental factors.
  • For each of the fundamental factors, patient-group comments received by PatientView were reframed in the Being Patient-Centric toolkit as questions that the patient groups themselves might well pose to companies. Patient groups pose 139 questions to pharma companies that are seeking to be more patient-centric.

 

 

 

 

 

rob halkes's insight:

How to be "patient-centric' ? 
A crucial question in today's business in health care: either in healthcare provision or in health industry. Upon its history of researching patients' opinions and suggestions, PatientView has gathered relevant insights to define patients' desires and wishes. These form the basis for the do's and dont's for health industry to become patient centric. Patients will reward them for the effort!

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Research Finds Physician Awareness of Patient Support Programs Lacking 

Research Finds Physician Awareness of Patient Support Programs Lacking  | Patient Self Management | Scoop.it
As healthcare globally is shifting to driving economic and clinical outcomes, the life sciences industry is increasingly invested in creating patient support programs that assist with access, quality, and cost of treatments. However, our research has shown that fewer than 1 in 5 patients are aware of the services available to them. Patients who are aware indicated they typically learn about available services via their doctor, and they find value in the services provided more than 75% of the time.

Via Olivier Delannoy
rob halkes's insight:

Collaboration in health care to the better good of patients, needs to come by efforts from all stakeholders! Co-creating healthcare paths would optimize a great deal of this collaboration!

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The non-compliant patient, reconsidered

The non-compliant patient, reconsidered | Patient Self Management | Scoop.it
Why would people act against their own self-interest? The non-compliant patient remains an interesting topic within healthcare.

Medical noncompliance

The very high prevalence of medical noncompliance, however, suggests that it must be explained by more than sheer obstinacy. The Centers for Disease Control and Prevention (CDC) estimates that in 2016 fewer than half of all Americans received the recommended vaccination for influenza and the numbers of Americans who have had screening for colon, breast, and cervical cancer is failing to meet targets set by the national Healthy People 2020 initiative. Beyond the U.S., the 2017 Future Health Index, a survey of 33,000 healthcare professionals across five continents, reports that a high percentage of patients don’t even recall their physicians counseling them to lose weight and stop smoking. (...)

Understanding non-compliant behavior

Why would someone act so blatantly against her own self-interest? The author provides a list of possible answers–a “differential diagnosis” of noncompliance–including “premature discharge,” “low health literacy,” and “financial difficulties.” (...)

... Take, for example, my patient Maurice, who refused to wear oxygen despite his chronic hypoxemia. When I first met Maurice, his refusal puzzled and exasperated me. How could someone with an oxygen saturation in the low eighties, someone with blue lips and clubbed fingers, someone who often seemed visibly short of breath, refuse oxygen? At every visit I talked while Maurice shook his head. “No, no, no.” He incanted. “No oxygen.”

Shared decision-making

Then one day I asked Maurice to tell me more about his life, about what oxygen meant to him. It turned out that he’d been chronically ill as a child but very proud and independent and determined not to become invalid. Wearing oxygen, to him, represented surrender in a very old battle. Plus, Maurice was a dapper man and ugly plastic tubing and metal tanks did not fit his self-image. Ultimately he agreed to use oxygen only in the privacy of his home. It wasn’t ideal, medically, but it was what he could abide. I reflected later that without calling it such, Maurice and I had participated in the relatively new model of shared decision-making, in which patient preferences are taken into account as much as doctors’ edicts.

 

rob halkes's insight:

Talking about medication in pharma, like in the debate about pricing, it often appears that the subject of the discussion is not placed in the context of  "medication", meaning the whole of the process of medication selection, prescription, delivery, adherence, support etc.
Indeed, the first thing to overcome this limitation is to understand  non-compliant behavior. But that is not the only perspective to it. Other perspectives for understanding are: the right medication for the right conditions and the right patient (as in "precision medicine"), the organization of the care process both from the institute (hospital or family practice), the actual delivery by pharmacist, nurse or other professional, and of course indeed, the support for the patient in his her self management! Comprehension of this all tells us two things:

  • shared decision making between care providers and patients is crucial to effectiveness and efficiency in therapy, and
  • the more intensive the collaboration (as in co-creation) between all involved (stakeholders like payers, family beyond health care professionals and patients) may open the window to better support and patient satisfaction.

As a bonus to this collaboration, the process itself will be better understood, upon which effectiveness and efficiency (also as in "costs") may readily be improved!

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How pharma and patient advocacy groups can become in sync

How pharma and patient advocacy groups can become in sync | Patient Self Management | Scoop.it

At next month’s Patient Summit Europe (19-20 October, London) find out how you can be more than a trusted partner – get yourself on the same side as your patients, and deliver sophisticated advocacy that fights their cause.

Patient advocacy groups and pharma companies have the same ultimate goal – better health outcomes – but managing these relationships needs care on both sides.

To give you an insight into the level of discussion you can expect at the summit, we spoke with:
- Nisith Kumar, Director, Global Patient Affairs, Pfizer
- Ann Kwong, Founder and CEO, TREK Therapeutics
- Lynn Bartnicki, Patient advocate, Living Beyond Breast Cancer

Read the article ‘Dancing to the same tune?’ here: https://goo.gl/hgVVms
Kind regards,
Cintia Hernandez Marco

rob halkes's insight:

“Some drug companies are really focused on patients, and some don’t have a clue.” Lynn Bartnicki, patient advocate

- a quote from the report of Eyeforpharma.

Good to see some words from pharma and patient advocates published.

Even better to follow and read one of the many publications about the pharma and patient groups' relations: a trying but difficult engagement

You can look at the patient perspective in "pharma corporate reputations", or at overviews of the patient movement. 

A study about pharma and the connected patient. And above all: check your own credibility as a pharma company in the eyes of patients: your bespoke data on your company, for its different affiliations and therapy areas, based on 6 years of global data on corporate reputation in the perspective of patients and patient groups.

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rob halkes's curator insight, September 13, 2017 8:27 AM

“Some drug companies are really focused on patients, and some don’t have a clue.” Lynn Bartnicki, patient advocate

- a quote from the report of Eyeforpharma.

Good to see some words from pharma and patient advocates published.

Even better to follow and read one of the many publications about the pharma and patient groups' relations: a trying but difficult engagement

You can look at the patient perspective in "pharma corporate reputations",

or overviews of the patient movement. A study about pharma and the connected patient. And above all: check your own credibility as a pharma company in the eyes of patients: your bespoke data on your company, for its different affiliations and therapy areas, based on 6 years of global data on corporate reputation in the perspective of patients and patient groups.

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myhealthapps blog – Bringing together patients' perspectives on eHealth and mHealth

myhealthapps blog – Bringing together patients' perspectives on eHealth and mHealth | Patient Self Management | Scoop.it

Launching PatientView’s myhealthapps blog

Working together with patient groups, plus a broad range of digital health stakeholders, this blog plans to …

  • Highlight best practice in health-app development, in mHealth, and in eHealth—from the patient perspective.
  • Focus the attention of app developers on the unmet health needs of the public, patients, and carers.
  • Bridge the gap between the public, patients and carers, and app developers—with the intention of improving the relevance and quality of health apps, mHealth, and eHealth, as well as improving their value for the health of the people using them (and even, hopefully, their impact upon healthcare systems).

If you are a patient group, or any healthcare stakeholder with information that could be posted on this blog,

Please feel free to suggest your post to the blog via the following online link:

CLICK HERE TO SUGGEST A POST

TO TAKE A LOOK AT THE BLOG, CLICK HERE

PatientView UK
Tel: 0044-(0)1547-520-965E-mail: info@patient-view.com
www.patient-view.com
rob halkes's insight:

Insigths into what patients really want are scares. PatientView has now launched the PAtientView's MyHealthApps Blog.

See here: PatientView MyHealthapps Blog

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Patients as partners by the King's Fund, Becky Seale

Patients as partners by the King's Fund, Becky Seale | Patient Self Management | Scoop.it
Our guide explores practical ways to develop collaborative relationships among health and care professionals, patients, carers and community partners. More collaborative relationships among health and care professionals, patients, service users, carers and communities are essential for the future of the NHS, but what helps to build effective relationships? This guide stems from an evolving body of the Fund's work focused on exploring and supporting shared leadership. This work is reinforced by a growing consensus that health services, agencies, patients and communities need to work together more – and differently.
rob halkes's insight:

"Patients as Partner" from the King's Fund is an insightful guide to working with patients.

PatientView has also developed a way yo bespoke development plans for organizations that intend to work more closely with patients and patient groups, like pharma or medical devices organizations, hospital or primary care groups. The unique approach of educating all and the method of co-creation with patients and other stakeholders makes all the difference to successful realization of partnerships

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National UPDATES from all over Europe - EUPATI

National UPDATES from all over Europe - EUPATI | Patient Self Management | Scoop.it
Patients are more and more in the drivers seat and we have news from all over Europe on how patients are working with other stakeholders to redraw the lines of what and how is patient engagement.

- On 4 October, IPPOSI celebrated its 10th Anniversary in Dublin, Ireland. EUPATI Ireland Fellow Rachel Lynch gave the keynote address and EUPATI Project Coordinator and European Patients’ Forum Secretary General Nicola Bedlington joined a panel to discuss the future of healthcare in Ireland and in Europe in 2026. 

- On 06 October, EUPATI Spain hosted a workshop with Fundacion Quaes in which approximately 50 patient representatives learnt more about the vision of EUPATI Spain, about the importance of patient involvement in biomedical research, and about how patients can use the EUPATI Toolbox to increase their knowledge of medicines development.
On 24 October EUPATI Spain met with the Spanish Patients Forum to formalise their future partnership and the proposal to integrate EUPATI Spain into the governance structure of the Forum as an autonomous Sub-Committee. On 26 October, EUPATI Spain agreed a joint programme of activities for 2017 with the Spanish regulator (AEMPS) which will see the funding of a series of approximately six trainings on topics relating to medicines research and development in 2017 and a commitment to continue the program for at least three years. On 3 November, Daniel Gil presented EUPATI to the Spanish MS Society, and on 8 November, Rob Camp explored EUPATI’s ideas on patient engagement in clinical research at the Fundación MÁS QUE IDEAS event, to mark the occasion of Clinical Research Week

- On 7 October, EUPATI Portugal presented at various sessions during the iMed ULisboa Open Day, and also at the APIFARMA Annual Conference on 09 November.

- Twice in October, EUPATI Slovakia hosted patient education events using tools from the EUPATI Toolbox for members of national rheumatism and multiple sclerosis organisations.

- On 26 October, EUPATI Luxembourg presented EUPATI and the Toolbox to patients and researchers attending the 2016 Medical Research Day organised by the Luxembourg Institute for Health and other national partners.

- Also in October, EUPATI UK provide 500 participants at the NHS Research Scotland Annual Conference with an opportunity to view a live demonstration of the EUPATI Toolbox

- In other news, EUPATI Austria, Germany and Poland all held National Platform meetings during this period. EUPATI Denmark helped Swedish partners explore the possibility of establishing a National Platform in Sweden in 2017. EUPATI Romania, and supporters of EUPATI in the Netherlands, continued to translate tools from the EUPATI Toolbox into their local languages in preparation for the launch of a complete Toolbox in January 2017.

rob halkes's insight:

Patients' advocates becoming more and more active in health support and patient empowerment. See what EUPATI does for example. It's an indication that partnership development with patients might be a sustainable leverage for business development of the health industry!

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Consumer priorities in Health Care Survey | Deloitte US

Consumer priorities in Health Care Survey | Deloitte US | Patient Self Management | Scoop.it
Discover what matters to health care consumers and what it means for health care providers.

Gaining an understanding of what drives the choice-making for health care consumers is complex. The journey is complicated and multi-tiered, and differs greatly from the consumer experience in other industries. But as the health care industry continues to shift from volume to value, and as consumers take a more active role in managing their health care, the need to understand what matters most to them grows.

In Deloitte’s 2016 Consumer Priorities in Health Care Survey, we explored a number of interactions consumers face throughout their health care experiences. Their expectations in these health care interactions are being shaped by the customized and convenient experiences they have grown accustomed to in other industries, like retail and banking.

As a result, they are demanding greater personalization; transparency in network coverage, medical prices, and bills; convenience; and more engaging digital experiences and capabilities. From doctor’s appointments to lab visits and even hospitalizations, consumers seek high quality service tailored to their specific needs from health care providers and administrative staff.

As technology advances in other areas, consumers expect the same of health care. If they can book a flight from their mobile device, why not a doctor’s appointment? Increased convenience could be facilitated at the point of patients’ self-research, scheduling, intake, and the discussion and scheduling of follow-on treatment needs. While this process remains largely manual today, despite significant investment in health IT, expanding the digital connection to providers could enhance convenience and personalization for the health care consumer.

The engaged health care consumer is proactive about their care management and cost considerations, and takes the time to understand larger aspects of the health care ecosystem that pertain to them. Therefore, consumers are increasingly expecting more out of the services they receive from their providers.

In response, players across the health care ecosystem are developing strategies to better meet the demands of the engaged consumer. Providers are working more collaboratively with health plans, technology companies, pharmacies, retailers, and device makers to streamline processes. While digital tools are not yet the highest priority or concern of health care consumers, as evidenced in recent Deloitte studies, their usage will be vital to the future of consumerism.

As part of a comprehensive study of the engaged health care consumer, Deloitte has developed and applied a number of tools to determine not just what consumers want or prefer, but how they prioritize their health care choices. Every day, consumers make tough decisions on how to manage their health care. Spending money and time—often in limited supply—on health care services puts consumers in the position of making difficult choices.

Survey findings revealed a series of top-tier priorities expressed by consumers with regards to their providers:

Consumers want to be known and understood in order to get a personalized health care experience; providers are in the best position to deliver it.

According to Deloitte’s Survey of US Health Care Consumers, 75 percent of consumers seek a partnership with their providers to determine the most effective treatment decisions. And one in three consumers wants their provider to push them to be more active in researching and questioning their prescribed treatments.

We found that the number one preferred interaction is having a doctor or other health care provider spend sufficient time with the patient and not rushing through exams.

Relationships with providers can be complex, often emotionally charged, and become increasingly crucial over time as older patients often find themselves with increased face-to-face care and support needs. The most attuned providers can steer consumers effectively by focusing on the element of human touch.

Download the survey to read in detail the health care interactions that stood out in each of the four thematic clusters.

 

rob halkes's insight:

Good to see that patients do know what they want: a good doctor and his/her empathy for their problems and enough time for attention to make the right choices to cope with the conditions.

See these survey results from Deloitte US: http://bit.ly/consumerpriorities

 

 

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Ensuring a Secure Environment for Participatory Medicine | Society for Participatory Medicine

Ensuring a Secure Environment for Participatory Medicine | Society for Participatory Medicine | Patient Self Management | Scoop.it

Keith Maddox

Unlike many members of Society for Participatory Medicine (S4PM) who have championed collaborative technology to improve patient outcomes and treatment for years, I am a relatively new proponent. Indeed, my experience in healthcare security, privacy and compliance only became a focus of my career when I joined the Computer Task Group, LLC (CTG) as a senior security consultant in 2012.

In that position, I was quickly immersed when I took over as interim Chief Information Security Officer at a large county hospital. I soon became aware that the adoption of security and privacy controls that were routine and standard in the financial industry were lacking in healthcare, especially at smaller hospitals and clinics. Across the board, budgets for healthcare IT were earmarked for new technology for patients and administrators, not security. Resources allocated for compliance with HIPAA safeguards were minimal, at best.

Around the same time, my colleague at CTG and the Editor-in-Chief of the S4PM newsletter, John Hoben, introduced me to Eric Topol’s book, “The Creative Destruction of Medicine.” It was an eye opener for me. I attended HIMSS in 2014 and 2015 and as I have learned more it is clear to me that patients and their advocates will be the ones to drive many of these new innovative technologies forward.

At the same time, new threats to healthcare security have not only eroded confidence that patient privacy can be protected; ransomware and potential hacks of medical devices endanger patients’ lives, not just their privacy. It’s no longer just about securing the EHRs.

It is critical that those of us who advocate for the goals of the Society for Participatory Medicine and the technologies necessary to bring about profound improvement in patient care help lead the way in promoting leading standards of security and privacy. Most importantly, as patients we need to insist that fundamental security practices are in place and that privacy of patient data is designed into solutions. [...]

 

 

rob halkes's insight:

Indeed, Patient self management demands for a supporting context, in two ways:
- Digitally, rather the more easier to realize, although Keith Maddox signifies the relevance of digital security.

- But also the personal context of physical persons both professional and from empathetic friends, peers and family. It is the integration and the functional design of the process, the interactions, interventions accessibility and availability of these contacts that needs the lot of attention to realize!

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Better information would improve cancer management, according to PatientView survey

Better information would improve cancer management, according to PatientView survey | Patient Self Management | Scoop.it

Survey results demonstrate the need for scientific information about cancer to be understandable to patients

  • Findings are based on a May 2016 survey of 124 cancer-oriented patient and carer organizations in 39 countries, conducted by PatientView, and sponsored by AstraZeneca.
  • 99% of respondent patient/carer organisations report that people living with cancer want to know how their cancer treatments work.
  • Over 90% of patient/carer organizations report that patients must understand scientific concepts about cancer if they are to better manage their cancer.  

 

LONDON, Friday, 7th October 2016

New survey findings indicate a significant need for scientific information that is accessible to, and understood by, people living with (and affected by) cancer. The majority of patient/carer organizations responding to the survey recognize that cancer science is complex and fast changing. As cancer science improves, and new discoveries occur, people who are living with cancer wish to learn more about the science of their cancer diagnosis and treatments. Nearly all (99%) of the patient/carer organizations surveyed “Agree” or “Somewhat agree” that patients want to know how their treatments work, and 91% of the respondent patient/carer organisations say that patients need to understand relevant scientific concepts about cancer to better manage their cancer.

 

The patient/carer organizations responding to the survey, however, also say that cancer science is hard to navigate for newly-diagnosed and experienced patients alike, and that currently- available patient information about cancer is difficult to understand, and confusing to people who are living with cancer [60% of respondent patient/carer organizations believe that cancer science is not well explained to patients and the public.

 

  “An exciting new wave of cancer treatments is emerging out of the rapidly-advancing scientific concepts about cancer,” says Alex Wyke, founder and CEO of PatientView. “Yet, in the face of the advance, cancer patient information remains stubbornly hard for ordinary people to digest. The results from this 2016 survey show that over 90% of respondent patient/carer organisations believe that people living with cancer (and their families and carers) will be better equipped to manage the disease if they have a fundamental understanding of basic cancer science. Arming the cancer patient community with intelligible knowledge about cancer will allow people with cancer to understand more about the disease and its numerous diagnostic procedures and treatments. Such knowledge will empower people with cancer to communicate more effectively with doctors, nurses, and all the other health professionals who help them to fight cancer. In short, information about cancer science—carefully tailored to the needs of patients—will ultimately permit people with cancer to make truly informed decisions about their health.”  

 

Key findings from the survey include:

99% of respondent patient/carer organizations “Agree” or “Somewhat agree” that people living with cancer want to know how their cancer treatments work.

Over 90% of respondent patient/carer organizations “Agree” or “Somewhat agree” that patients must understand scientific concepts about cancer if they are to better manage their cancer.

57% of respondents indicate that increasing the awareness of cancer treatment options among patients and the public is a top priority of their organization.

61% of respondents say that the public is unfamiliar with basic scientific concepts about cancer.

83% of patient/carer organizations have been asked by patients/carers about immuno- oncology. However, only 48.2 % of those same organizations are themselves familiar with the topic of immuno-therapies in oncology.

67% of patient/carer organizations have been asked by patients/carers about gene mutations associated with cancer and biomarkers. Again, though, only 52 % of the organizations themselves claim familiarity with the concepts of genetic testing and precision medicine.  

 

Full survey results can be accessed via this link

https://we.tl/hDPPd00SqR  

 

ABOUT THE SURVEY SPONSOR This 2016 survey of 124 patient and carer organizations was sponsored by AstraZeneca, a global, science-led, bio-pharmaceutical company that focuses on the discovery, development and commercialization of prescription medicines—primarily for the treatment of diseases in three therapy areas (respiratory/autoimmunity; cardiovascular/metabolic diseases; and oncology).  

 

ABOUT THE ORGANIZATION THAT CONDUCTED THE SURVEY
PatientView was founded in 2000 out of a belief that the views of patients should be considered in every important healthcare decision (whether a new healthcare product or service, or a government change to a healthcare system). A UK-based research, publishing and consultancy group, PatientView has the capacity to reach out to 120,000 patient groups worldwide, covering over 1,000 medical specialties.

 

PatientView Ltd, One Fleet Place, London EC4M 7WS, UK +44 (0)1547 520 965
info@patient-view.com
www.patient-view.com

 

Media contact

Alex Wyke, CEO, PatientView +44 (0)1547 520 965 alexwyke@patient-view.com]

rob halkes's insight:

The more cooperation between patient groups and health industry, the more the really relevant and significant information can be researched to better health outcomes!

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rob halkes's curator insight, October 7, 2016 9:06 AM

Grt example of how big pharma supports healthcare provision, by generating significant patient needs!

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Who truly represents the patient perspective? – Cancerworld

Who truly represents the patient perspective? – Cancerworld | Patient Self Management | Scoop.it

Who truly represents the patient perspective?

By Simon Crompton

In CancerWorld September / October 2016 2016, 18-21.

 

As researchers, regulatory bodies and health systems give patients more of a voice in consultation and decision making, advocacy groups are questioning what it really means to represent the patient view.

Nothing about us without us. So goes the mantra of patient organisations around the world, asserting their right to have a say in health decision-making.

Five words that make patient involvement sound so simple. But a growing body of patient and cancer organisations are asserting that it’s anything but simple: the whole idea of ‘patient representation’ is flawed and needs a re-think, they say.

Conventional models of patient representation bring risks. For some committees, companies and organisations, having a patient on the panel simply means they can tick the patient involvement box and move on. At least that’s the view of Deb Maskens, founder of Kidney Cancer Canada and Vice Chair of the International Kidney Cancer Coalition (IKCC).

“It’s far too easy for health technology assessment organisations or pharmaceutical companies to say that they have a patient on their committee and therefore they have had patient input,” she says. [..]

And then there’s the question of how ‘representative’ patient ‘representatives’ can actually be. Several European patient organisations have become concerned about the number of committees where one or two firmly established patients are there to represent all cancer patients – even in discussions that relate to a type or stage of cancer entirely different from their own. That situation, says Maskens, is “absolutely ludicrous”. 

Bettina Ryll, founder of the Melanoma Patient Network Europe, Chair of ESMO’s patient advocacy working group and a patient representative on many committees, agrees. As long as patients on committees are expected to represent the views of hundreds of people whose experiences may be entirely different from their own, they are in a very vulnerable and ineffective position.

“It’s very very difficult to be representative. I’m fed up with being challenged about this wherever I go. People say: ‘Yes, but how representative are you anyway?’ and this is a very easy way to take out the patient perspective if it’s not convenient. It’s an especially pressing issue because not everyone in health systems is happy with patient voices becoming more integrated into health decision-making. Undermining difficult patient views happens very frequently, and in the end, just the ‘yes-sayers’ are left over. That’s not sufficient.”

Those who represent patient interests in complex technical discussions are also vulnerable to criticism. Discussions on the relative risks and benefits of specific drugs, for example, may require some expert knowledge from the patient representative. But people with that degree of understanding are then accused of no longer being representative of most patients. “It’s a double bind,” says Ryll. “You can’t win.”
Evidence-based advocacy

But there may be a way forward. A growing number of patient advocacy groups are adopting the idea of ‘evidence-based advocacy’ to replace conventional ideas of ‘representation’. It involves letting go of any expectation that one patient should be able to represent everyone. Instead, patients on groups or committees gather, filter and convey information about the patient perspective on a particular issue from a variety of sources. They become a conduit for evidence from the relevant patient community, not a narrator of personal experience or opinion.

“I don’t in any way want to take away from the value of people conveying their personal narratives,” says Maskens. “But patient representatives now need to be equipped with a new skill set.

“Those on established committees should have to have an ear to the ground of what is happening in that disease space. There are thousands of people online in some form, and so before a review decision comes up, patient representatives can take a deeper dive into that patient community – listening to them, asking open-ended questions.

Read on... ! HERE

 

 

 

rob halkes's insight:

From "ePatient" up to "evidence-based patient advocacy: Progress is seen in how patient are (getting) represented. Ever since 2009/10 some patients made themselves known as "epatients" on social media to indicate their willingness and drive to speak as representative of patients with a specific condition.

Patient Advocacy groups took up this idea and forwarded patients among their midst. "Patients Inside" became a certificate for conferences in which participation of patients was organised and guaranteed. The idea is now introduced to use the term "evidence based" patient advocacy in which "representatives" "hear" their peers about some issue of interest and then forward the "data" to meaningful information for whoever wants to know.. It is a positive add on to the skills and channels patients have to forward their opinions, experiences and preferences!

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rob halkes's curator insight, October 5, 2016 9:47 AM

From "ePatient" up to "evidence-based patient advocacy: Progress is seen in how patient are (getting) represented. Ever since 2009/10 some patients made themselves known as "epatients" on social media to indicate their willingness and drive to speak as representative of patients with a specific condition.

Patient Advocacy groups took up this idea and forwarded patients among their midst. "Patients Inside" became a certificate for conferences in which participation of patients was organised and guaranteed. The idea is now introduced to use the term "evidence based" patient advocacy in which "representatives" "hear" their peers about some issue of interest and then forward the "data" to meaningful information for whoever wants to know.. It is a positive add on to the skills and channels patients have to forward their opinions, experiences and preferences!

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Consultation - EUPATI Guidance for patient involvement - EUPATI

Consultation - EUPATI Guidance for patient involvement - EUPATI | Patient Self Management | Scoop.it
EUPATI has launched a public consultation in order to review its EUPATI guidances for patient involvement in the medicines research and development process.

EUPATI has launched a public consultation in order to review its EUPATI guidances for patient involvement in the medicines research and development process. The guidances are provided as four distinct frameworks:

  • patient involvement in industry-led R&D
  • patient involvement in health technology assessment (HTA) bodies
  • patient involvement in regulatory processes
  • patient involvement in ethics committees

 

The frameworks have been developed in response to the increasing need to draw on the experience and specific knowledge of patients, and their day-to-day use of medicines, in order to improve medicines development and evaluation. The frameworks suggest approaches to allow structured interaction with patients, and thereby facilitate the exchange of information and constructive dialogue at national and European level where the views from users of medicines can and should be considered.

The four frameworks have already received feedback from a number of partners of the EUPATI consortium (including patient organisations), but further evaluation and feedback from patient organisations and other key stakeholders are essential in order to validate the guidance. The internal review resulted in some suggestions that require more discussion (applies namely to patient involvement with industry, but also with regulators). We specifically welcome further input on these by reviewers.

If you have significant expertise and knowledge in patient interaction with industry, HTA, ethics committees or regulatory bodies, please consider contributing to this review; please add your suggestions (in tracked changes) and comments directly on the documents after downloading them here:

  1. Framework for patient involvement in regulatory processes (DOCX)
  2. Framework for patient involvement in HTA (DOCX)
  3. Framework for patient involvement in industry-led medicines R&D (DOCX)
  4. Framework for patient involvement in ethics committees (DOCX)
  5. Letter: EUPATI guidances: public consultation until September 15 (PDF)

Once you have reviewed the documents, please forward them to the following address: consultation@eupati.eu. This public consultation will end on 15 September 2016.

Following the consultation all comments will be carefully evaluated, and the guidance will be revised and released.

If you have any questions on the consultation process or on the documents, do not hesitate to contact Giorgio Barbareschi (Giorgio.barbareschi@eatg.org )

rob halkes's insight:

Gr8 to see how EUPATI the European Patients Academy actively invites patients and others to respond to their framework guidelines for patient involvement. It should trigger anyone to reflect on this who is concerned about better health and health care! See here

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Free White Paper: Patient Engagement Trends

Free White Paper: Patient Engagement Trends | Patient Self Management | Scoop.it

Patient Engagement:
Programs Boost Care Plan Adherence, Behavioral Health a Barrier

Transformational patient-centered models emerging post-ACA are designed to succeed with a core of engaged, activated patients, yet enlistment of individuals in chronic care management, telehealth and other health enhancement interventions continues to challenge the healthcare industry.

While more than 60 percent of healthcare organizations report that their patient engagement programs have elevated patient satisfaction, care plan adherence and overall quality metrics, populations with low health literacy or behavioral health conditions are more resistant to efforts to engage them in self-care.

These findings were among the benchmarks identified by an inaugural survey on Patient Engagement by the Healthcare Intelligence Network. The August 2015 survey also determined that 79 percent of respondents are striving to improve patient engagement, employing an arsenal of tactics and e-tools.

Download this free Ebook for more data on:

The top barrier to patient engagement;

The role of patient portals in patient engagement,

Tools used to engage patients and much more.

Click here to download the report today.

This white paper is an excerpt from 2015 Healthcare Benchmarks: Patient Engagement,
For more information, click here:
http://store.hin.com/product.asp?itemid=5075.

 

rob halkes's insight:

Patient engagement, patient centered care and many other terms in which patients get the front seat in healthcare, are an obvious hype. Talking morally about it is no challenge, but realizing patient centered care or participatory care, as well as co-creating care with them, is indeed a challenge to many.
ehealth and telemedicine provides a road map for development

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Survey: Most Canadians want, but do not use, digital health tools

Survey: Most Canadians want, but do not use, digital health tools | Patient Self Management | Scoop.it
They may want it, but, for one reason or another, they aren’t using it. While nearly 90 percent of Canadians said in a recent survey that they want digital health technologies – believing it leads to better healthcare – only a small percentage are actually taking advantage of tools, according to a recent survey of over a thousand Canadians.  
rob halkes's insight:

Having digital technology is one, patients willingness to use it, is two. But integration of ehealth and mobile health applications is the core to success, even if everyone sees the benefit of it. It looks like we are still early in the process of learning how to make this happen, despite the good willingness.

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Wearable technology - What do consumers imagine in the future?

Wearable technology and the internet of things - recent report by Ericcson.

See the download report here: https://www.ericsson.com/thinkingahead/consumerlab/consumer-insights/wearable-technology-and-the-internet-of-things

 

Key findings:
Wearables become the most personal devices

  • Two in five users of wearables say they feel naked when not wearing their device, with a quarter even sleeping with it on
  • Despite this, a quarter of those who have bought wearables in the past three months say their expectations have not been met
Consumers predict the wearables inflection point to be beyond 2020
  • 6 out of 10 smartphone users are confident that wearables will have uses beyond health and wellness
  • Consumers predict that most wearables ideas will only become mainstream beyond 2020. However, current users of wearables believe the development will be much faster
Wearables manufacturers as personal data brokers
  • 70 percent of users of wearables perceive wearables manufacturers to be very serious about protecting their data. In fact, users of wearables are more likely to share their data with wearables manufacturers than with doctors, insurance companies and internet companies
A new role for smartphones in the wearables future
  • 43 percent of those surveyed believe smartphones will be replaced by wearables, while 40 percent of smartwatch users already interact less with smartphones today. As wearables get smarter, the smartphone may become a secondary screen
Internet of Things (IoT) future shaped by wearables
  • 74 percent believe multiple wearables and sensors will help them interact with other devices and physical things around them, whilst 1 in 3 smartphone users believes they will wear at least 5 wearables beyond 2020. Thus, a setback in wearables adoption might delay the overall adoption of the IoT among consumers
rob halkes's insight:

There is still a long way to go to make wearables the new watch, self evident and always with you. But the stage of innovators is now indeed on the break to  early adoption and will grow to majority! Key segments? Gadget lovers ('quantified self') and patients who feel supported by their wearables. In my opinion wearables are a better proposition than 'just' apps.

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What’s up on WhatsApp: How native messaging apps can make the difference - FACE

What’s up on WhatsApp: How native messaging apps can make the difference - FACE | Patient Self Management | Scoop.it

In our fast-moving world, how can market research agencies keep up with the way consumers express themselves? Tereza Lachmanova, who heads up FACE’s online research communities and helps researchers manage and draw insights from community data, discusses how using publicly available digital tools can benefit self-ethnographic research in this new white paper. Tereza says:

“With technology rapidly changing, market researchers have been faced both with great opportunities and challenges when it comes to working with online communities. We are constantly evaluating how to get our communities most engaged with our research, and this paper discusses our findings on testing the use of existing mobile messaging apps rather than using research-specific ones.”

“Having worked on a wide variety of self-ethnography projects, Tereza tested numerous approaches to ensure community members would feed back ‘in-the-moment’ content, meaning they communicate experiences, preferences and emotions as they happen, rather than communicating them as a prompted task at a fixed time of day.”

To read the full white paper, you can download it for free on the FACE website here.

rob halkes's insight:

Great insights into how we might learn from patients' experiences through self-ethnography via "whatsapp"

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“Think, think, think”: message to European Cancer Patients Coalition AGM | e-Patient Dave

“Think, think, think”: message to European Cancer Patients Coalition AGM | e-Patient Dave | Patient Self Management | Scoop.it

View mHealth presentation to ECPC Annual General Meeting on Vimeo. This is a quick first post to get this online before the meeting finishes. I hope to add

I’m in Brussels at the AGM (Annual General Meeting) of the European Cancer Patients Coalition, an association of over 400 cancer patient organizations. They are organized, they’re methodical, they’re action-oriented, working on health policy, drug development processes, patient involvement in clinical trials, and anything else in the patient’s interest. I was invited by Mrs. Kathi Apostilidis, vice president of ECPC and a long-time member of the Society for Participatory Medicine. She is also known as a force of nature.

The slides are available for viewing and download on SlideShare. More later.

 
rob halkes's insight:

Great slide deck from Dave the Bronchart (@e-patientdave)and even greater insights from his reflection added to the presentation from his hotel room!

He juxtaposed:

  1. the very need patients have to learn about their condition(s) and about what could be done about it. Also indicating the effect of this learning process: patients being experts on their own condition and so be the ideal co-producers of new research, both in formulating hypotheses and in design the research;
  2. And, a more fundamental point: how to judge new outcomes of medical studies when new insights turn “facts” into new lights and appear to be not as ever lasting as the research project would indicate.

 

We surely need to rethink both medical practice and medical research.
“Think, think, think!” is indeed an upgrade of “let patients help” into a new and more fundamental level ;-)

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One thing every doctor should say to every patient

What if every physician, in every communication with a patient included a "What you can do for yourself is....." statement? This 6 minute exploration of patient engagement and self-management describes one patient's experience with her physician's suggestion that she experiment with integrative health practices.

rob halkes's insight:

Great story about a well meant advice to each patient from each physician...

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Taking a participatory approach to development and better health. Examples from the Regions for Health Network (2015)

Taking a participatory approach to development and better health. Examples from the Regions for Health Network (2015) | Patient Self Management | Scoop.it
This publication documents the experiences of participatory approaches for development and better health taken by Region Skåne (Sweden) and three other regions, described in case studies: the Autonomous Province of Trento (Italy), the Autonomous Community of Andalusia (Spain) and Wales (United Kingdom).
rob halkes's insight:

Participatory Care Examples by WHO

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5 myths physicians believe about patient experience

5 myths physicians believe about patient experience | Patient Self Management | Scoop.it
See why clinician-patient communication, leadership of the care team, and support and empathy for the patient across the unit are the most important factors for success—and how physicians can embrace the role of
rob halkes's insight:

Good to se these in a row: Let these myths about patient experience  help you evaluate your own beliefs and attitudes ;-)

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Respecting patients is associated with more patient-centered communication behaviors in clinical encounters - Patient Education and Counseling

Respect is associated with positive and patient-centered communication behaviors during encounters.
rob halkes's insight:

Respect is associated with positive and patient-centered communication behaviors during encounters.

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Big BMJ supplement on Patient Centred Care – with many SPM and MedX voices | e-Patients.net

Big BMJ supplement on Patient Centred Care – with many SPM and MedX voices | e-Patients.net | Patient Self Management | Scoop.it

By ePatient Dave:
This is a great week for Society of Participatory Management (SPM), for our colleagues at the Stanford Medicine X conference, and for everyone else who's been working for years to shift medicine's
I’m thrilled to say that the BMJ, formerly the British Medical Journal, has just released a new article I wrote about the “social movement” aspect of our work, including the rationale for listening to the patient perspective.

Intended for medical audiences around the world, it’s part of a big, 21-article multimedia “Spotlight” supplement that will be in Thursday’s print edition; it was all released online yesterday. Over on the e-patient blog I posted the full list of articles, including the names of other members of our Society for Participatory Medicine who are in this issue. Big participation, big visibility!

This supplement, appearing in one of the world’s top medical journals, may well be the biggest moment yet in the history of our movement. It’s got hours of reading and listening, with contributions from eight countries, if I counted correctly.

Those of you in my generation – the era of many social movements – will relate to the parallels with what’s happening today: a whole class of people whose voice has been considered “not worthy” is speaking up, demonstrating capability, and pushing back when we’re told to “stay in our place.” :-)

rob halkes's insight:

The new era of health care is to be build around these principles:

- Multidisciplinary connected,
- Integrated,

- participatory care, and,

- eHealth

Participatory care is about patient empowerment, not only by principle but also by effectiveness. And, beyond that, it is also from a finance argument that active, guided, but self-managing patients will lead to better health outcomes and less costs.

Lots of health care systems, governments and payors must reflect to find approaches of development that are constructively aiming at building the new structures of health care with parallel reasonable and attainable efforts in lowering budgets, instead of enforcing costs cuts that initiate panic and non desirable effects.

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New Website on Medications: Iodine

New Website on Medications: Iodine | Patient Self Management | Scoop.it

- Find what works - information about medications

from medical experts - and people like you.


Side effects, reviews, tradeoffs, and tips about thousands of drugs, built from clinical research and real life experience from people like you.

The database, which launched In September last, uses Google surveys to get consumer information on a wide variety of both over-the-counter and prescription drugs.

Users can search a specific drug from Aleve to Xanax and see how people generally feel about its efficacy, about the side effects from actual users, tradeoffs, comments from users, warnings, costs, and a readable versions of the drug’s package insert.

Iodine uses Google Consumer Surveys, of which they have 100,000 ones completed, and they add to their website every day. Iodine also uses data from clinical research, pharmacist surveys, adverse event reports made to the Food and Drug Administration (FDA) and the National Average Drug Acquisition Cost (NADAC)–which reports the average wholesale price pharmacies pay for over 20,000 drugs.

See also here and here

rob halkes's insight:

"Iodine" looks like a sharp curator of information on Medications.

It is actually a database on information about medications both from the research/medical site and from the users/patients' site: experiences and opinions. In the presentation of the data, there is a  partition between sources of information.

It's just only English and US based. A nice example to what is possible on information about medication to users!


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Medical errors: We can't trust doctors to get it right

Medical errors: We can't trust doctors to get it right | Patient Self Management | Scoop.it

We have lost track of what should be the most important dictum in medicine, his "First, do no harm."


“If doctors do no other good, they at least prepare their patients early for death, undermining little by little and cutting off their enjoyment of life.”

These words from Montaigne are 350 years old, but, sadly, too often they describe the results of modern medicine, particularly when it is mindlessly applied in a needlessly heroic way to the end of life.


I spend a lot of time going around to different places warning professionals and the public that overdiagnosis, overtesting, and overtreatment are bad for our health.

Recently I have been witnessing these dangers firsthand. I have a friend who has lung cancer — the “good,” slow-growing kind. His doctors have been less kind than the cancer. They keep screwing up in ways that seem likely to kill my friend before his cancer does.

The basic problem is that modern medicine consistently violates the ancient advice of Hippocrates: “It is better to know the patient who has the disease than the disease the patient has.”


My friend has a small army of very highly specialized doctors all treating lab results in one tiny medical domain while ignoring all the aggressive stuff the other specialists are doing. None of the doctors has a global picture of my friend’s treatment and the specific risks and benefits that apply to each new test or treatment.

The result is dangerous medical chaos. Doctors love pictures and get paid a lot for ordering and reading them. Over the years my friend has been subjected to countless and mostly unnecessary imaging studies with contrast dyes that have compromised his kidneys. It seems likely that renal insufficiency will kill him before his lung cancer does. He is also no longer eligible for additional lung-cancer treatments because his kidneys flunk protocol requirements. And along the way he has been prescribed several unnecessary medications that also hurt his kidneys. Everyone focused on the lung cancer; no one noticed the harm they were doing to the kidneys.

There have also been several close calls because he was prescribed multiple medicines by multiple doctors without coordination and due consideration of the drugs’ interactions and synergistic harms.

The mistakes were all easily preventable if anyone were minding the store and paying attention to the patient, not the lab tests. In any common-sense world doctors would care about risks and harms and wouldn’t always be rushing to order stupid and dangerous tests and treatments.

.. Read on in the original bog!

rob halkes's insight:

Everyone will have some example of how things can go wrong. or say less then well in care for health ... 

It is my own conviction that patients need to be assertive first, not just health literate. Professionals are professionals while they have  taken up the task to help and support patients with their conditions. First to that is explaining what they suggest and making sure the patient understands.. -

Just like you just can't expect a teacher to be ineffecive with pupils not knowing what they teach. -  In education that's a fact to start with..!

In health care, one cannot start from the fact that patients know what they have as a condition....


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