Care in co-creation with patients will generate the hightest impact on innovating health care, says Janine Budding

Innovation has been around since the early days of civilization, even in healh care, innovation has a long history with Hippocrates, Galenus, Vesalius, Harvey, Laennec, Claude Bernard, Fleming & Marie Curie.

Innovation approaches have changed and taken on many different forms very rapidly over the past 150 years.

Nowadays we discuss concepts like patient centric-design and open innovation in the context of healthcare management. However I guess it makes perfectly sense to carry forward the experiences and findings to other fields of application like i.e. the field of health care in co-creation. Current developments within the health and care system (e.g. the evolvement of shared decision making, the increasing and desired autonomy of patients) display the changing role of patients from passive recipients of medical services to active partners and co-producers of their own health.

The latest approaches have evolved into what we call “innovation co-creation (ICC),” where all the relevant stakeholders are participating across the value chain.  And this approach is not just about a one-sided contribution model — as in “give me your ideas and then we will figure out what to do with them” — but a more collaborative engagement, with greater interaction and intensity of participation among creators, from generation, selection, incubation, and eventually, even to marketing the new product or service.

Hence the empowerment of patients can be seen as a quite familiar phenomenon to the empowerment of patients who are in the end also consumers of health services. The major challenge of consumer involvement into the disease management process is to utilize the knowledge and experience of patients in order to foster the prevention of diseases, the individual health status and the quality of life.

  

Doctors 2.0 & Janine Budding Manifesto

Acccording to Wikipedia, a manifesto is a public declaration of principles and intentions, often political in nature. The  Doctors 2.0 TM & You manifesto is not political.  It is a collaborative work in progress; V1 was presented in May 2012 by Janine Budding who collated the list of declarations, collected in English and French. Have a look at where we are now!

Our goal is to identify the ways in which the inclusion of health 2.0 tools and social media platforms can improve care and translate this into the words of a manifesto. Our point of reference, is  The Cluetrain Manifesto, a set of 95 theses  put forward as a manifesto, or call to action, for all businesses operating within the newly-connected marketplace.
What does Health Care have to do with this? Everything! The Cluetrain Manifesto tells us that the market is the conversation ; the Internet facilitates the bypassing of formal hierarchies creating a more informed marketplace and consumer through those conversations. Substitute “health care” for market place and healthcare organizations for businesses, and we’re ready to move forward!



Doctors 2.0 & You Manifesto in 85 sentences
1. Health is co-creation.
2. Health 2.0 is win-win: care actors are better trained to support a more informed patient.
3. Health 2.0 is a permanent round table between all actors in society for the creation
of a citizenship of health … all members of the same team!
4. Social Media have been widely adopted throughout the world and healthcare; professionals are no different than other people
5. “We are Smarter than Me” in coping with disease.
6.  The Social Web is leading into co-creation of a new participatory medicine
7. Let’s go from the former Isolation of  Illness to the We of the Wellness thanks to hyper connectivity.
8. Physicians should understand the social changes and their changed role in healthcare
systems, (which in many countries are in dire straits) and the emergence of a new breed of
patients.
9. Social media brings an unprecedented ability for people to collaborate continuously
on a global basis. This will enable scientists to quicken the pace of discovery and
research leading to a greater understanding of disease with better treatments faster
than ever before.
10. Social media includes the challenging issue whether the content complies with
regulations. Social media will have to fall in line with the spirit of these regulations.
11. Social media offers us the advantage to reach out across multiple generations of
patients to increase the dissemination of information
12. There is a need for an active and critical role in the digital public space.
13. We need to “Mind the Gap” between social media networks of patients and those of
healthcare professionals. Bridging the gap will bring us a a step further.
14. Patient-centric care  is a hybrid of Internet-based education, mHealth
technologies, telehealth, and provider supervision and visits.
15. The key is that the patient is the source of critical information and engagement.
16. Social medias are primarily used to teach and to learn and hardly at all to treat. Since treating
patients is Healthcare’s core business, these networks have not reached that core yet.
17. Health convos on the Social Web are driven by Generosity and the Joy Factor.
18. The World is flat. Healthcare is now Horizontal.
19. There may be a need for more robust platforms for safe use of SoMe in healthcare.
20. We should not focus on technology too much and we should certainly not use this
argument as a reason to postpone innovation.
21. Diseases, treatments, healthcare actors are now convos on the Social Web
22. Adaptative Darwin Theory is fueling the healing connections at the Social Web;  it´s
not Serendipity, nor forced or guided connections
23. Healthcare Social Networks and online conversations are challenging and transforming
the establishment and status quo of the Healthcare arena controlling the power of
education, professional and patient associations, etc
24. The question is not whether physicians or healthcare opinion leaders have to
use social networks or have to blog, but if they are aware of  the challenges and
social responsibility in these times of epatients, ehealth and never ending online
health information.
25. The huge power of  healthcare conversations will bring down the existing and constricting
regulatory walls
26. A patient is not a diagnosis but a human being in need of compassion.
27. Health 2.0 should improve the quality of exchange and management of patients
when involving all stakeholders; professionals & patients 2.0.
28. Medical professionals of the future have to be team builders between social media,
telemedicine, patients, healthcare providers and healthcare insurance and payers.
29. We need to move from evidence based medicine to science-based medicine and find
a way to bring the latest research directly to the patients, doctors.
30. The Internet is enabling conversations among patients and doctors that were simply
not possible in the era before the mass use of internet.
31. TeleHealth has to be globally acknowledged by medical professionals as a sound
alternative for meeting the patient in his clinic.
32. With the introduction of eHealth, medical professionals have to refrain from income
driven perverse stimuli.
33. The Internet provides us with new ways to bring the latest research directly
to patients and the doctors are co-investigators in the search for the desired
improvement of Health care.
34. These networked conversations are enabling powerful new forms of social
organization and knowledge exchange to emerge.
35. As a result, patients are getting smarter, more informed, more organized.
Participation in their treatment changes healthcare fundamentally.
36. Crowdsourcing patients and doctors have figured out that they get far better
information and support from one another than from books and research. Health
care in co-creation is about adding value to the quality and speed of treatments for
common and rare diseases.
37. “Stop just marketing, Start socializing” Bye Loneliness, Hello Community!
38. Patients who come to the medical appointment with information about their
symptoms  are eager to understand what needs to be done to cure their
disease and are more actively engaged with their doctors.
39. There are no secrets. The networked crowd knows more than a doctor or hospital
does about their own products. And whether their treatment is good or bad, they tell
everyone.
40. “Stop just marketing, Start socializing”
41. The legalistic requirements of EBM, such as its insistence on treatments that have
met the “gold standard” of “well-designed, large-scale, double-blind, randomized,
placebo-controlled, clinical trials”, actually prevent doctors from effectively
diagnosing and treating patients.
42. Social is Healing
43. Imagine a world where every individual had the option to speak to the best doctors in
the world, where getting multiple opinions or an average opinion on a condition was
possible.
44. Collaborative medicine will change the level of care some third world patients
receive
45. The internet had the catalyst role of democratizing medical knowledge that was until a
few years ago only in the realm of health professionals
46. In just a few more years, the distant “voice” of doctors as the sound of the medical
profession will seem as contrived and artificial as the language of the 18th
century French court.
47. The recognition of a problem or situation mostly leads to innovations that have greater
positive impact on a society than high-tech health innovations
48. Healthcare organizations that think it’s enough for a healthcare organization to
just be online misunderstand the  potential of  an optimized mobile
website, for their communication with patients and future patients
49. Health care workers that don’t realize that their markets are now networked person-to-
person, getting smarter as a result and deeply joined in conversation are missing
their best opportunity.
50. Mobile internet access is not a mere fad; widespread adoption of mobile
communications means that an investment in mobile development now can set your
healthcare organization apart.
51. Hospital websites that are optimized for smartphone browsers better attract new
patients
52. Hospital websites that are optimized for smartphone browsers boost their patient
satisfaction scores.
53. Co-creation and transparency are key
54. Medical care should be easily accessible at all reasonable hours
55. A patient must able to get in a doctor’s advice within 48 hours.
56. Social Media and mobile access are the tools to finally share information between
caregivers and care takers and for (big) pharma; the opportunity and obligation to
communicate with patients and doctors instead of pushing their products
on profit focusing stakeholders.
57. Patients can now access a huge amount of high-quality information that
can be used for self-care and to understand when to seek professional care.
58. Access to information will increase a patient’s ability to affect the course of their
disease and decrease their need to use the established healthcare system.
59. A key point for eHealth is the public access and use of the information about health
(diseases, diagnostic, treatments…), but the huge quantity of information to patients
and general public are difficult to interpret, because of the lack of
medical education.
60. Through eHeath information, patients have the ability to access, view, monitor and
communicate with the medical community that can have a profound impact on QOL
scores and have a positive healthcare economic impact
61. Medical information on the internet with a  proportion of  information not applicable to a patient’s specific situation can result in people
believing they are informed when they are not.
62. The internet and eHealth are excellent tools in the hands of healthcare policy makers:
they offer the possibility to quickly adapt to changing scientific and socio-economic
conditions in healthcare
63. Decisions on policies that regulate public health must be submitted to the public, so
that citizens express their opinions freely.
64. The views of citizens on a decision of public health policy must be subjected
to assessment
65. The Internet is the most suitable means to encourage public participation in
evaluating the decisions of public authorities.
66. With the use of eHealth, SoMe, self-management in Health Care, productivity gain
can reach 1 billion  euros
67. eHealth reduces the amount of nurses, doctors, psychiatrists and thus smaller staff
shortages in health care.
68. eHealth limits the growth of health spending: large-scale investment in e-health and
self-management concepts provide significant savings for business and insurances.
69. E-health, telecare and self management are available outside work hours for lower
costs than normal daytime healthcare. Significant productivity gains will be realized.
70. The potential of e-health and self-management is underused.
71. Innovation-Driven Health Care, is health care that develops care in co-creation with
patients
72. One human is  different from the other, the physician should see the person in
front of him in connection to any guideline and not vice versa
73. The internet enables communities to form and people within those communities
to communicate. This enables the support of patients by patients, particularly in
certain disease areas like rare diseases where there may not be anyone with the
disease nearby. And enables the interpretation of the wealth of information based
on personal experience so patients can understand the difference between the
information and misinformation (but it can propagate misinformation). These both
help patients to be more informed and better supported, again without using the
established healthcare systems.

74. Smartphones now have more computer power than most medical devices.
75. Smartphones are enabling remote monitoring and investigation. This will change
healthcare by removing the need to visit healthcare centers and enable the
monitoring of a patient’s condition continuously.
76. Smartphones will change the way diseases and their burden on patients are
understood, leading to new treatments and better care.
77. Public Relations does not relate to the public. Healthcare companies are afraid of
communicating with all their patients: happy and unhappy patients
78. Compassion for care is not a parlor trick to pick up.
79. Command-and-control management styles both derive from and reinforce
bureaucracy, power tripping and an overall culture of paranoia.
80. Paranoia kills conversation. That’s its point. And lack of open conversation kills
healthcare organizations.
81. Patients have real power and they know it.
82. Patients like this Health 2.0 much better. In fact, the are co-creating it.
83. Patients have got some ideas for you too: some new skills you need, some better
service and lots of new tools for telecare. New stuff that saves time and money.
84. We know some doctors. They’re pretty cool online. Do you have any more like them?
You’re hiding in hospitals and healthcare institutions? Can they come out and play?
85. When patients have questions they turn to each other for answers. If doctors didn’t
have such a tight paradigm maybe they’d be among the people we’d turn to

Janine Budding, Medical journalist

Janine Budding is the World News Online Editor for MedicalFacts and has been writing about the health care since 2001, having previously worked as a health care manager and pharma representative, while contributing articles to MedicalFacts.nl. She specialises in the business developments of the pharmaceutical industry -patient advocacy - and has a particular interest in healthcare in co-creation with the patient.

Janine Budding and patient advocay

I, Janine Budding, am an patient advocate.  As medical professional I was looking to us my influence in a different way, to the benefit of patients. Buy writing of deal with many aspects to patient advocacy, the range of backgrounds and interests of patient advocates is broad. Did you know that "Patient advocacy" is considered an up-and-coming career?  Entrepreneur Magazine and US News & World Report have both identified advocacy as a career that is coming into its own.


I guess you could say I have always been a patient advocate. I like to make a difference, help people, pull together influence thrgh twitter and my blog, myriads of activities, and help patients, friends, and colleagues achieve on health issues. Healthcare is so complex these days that nurses at the bedside can't do it all. Although nurses remain advocates, the complexity of healthcare today requires additional advocacy support. This is why patient advocacy as a discipline is so critical today.
 
Through MedicalFacts.nl I provide national healthcare platform for advance care planning and healthcare ethics through writing, speaking engagements, facilitation, and consultation for individuals or organizations to enhance their or others' self-determination. Helping people understand their need for an advance care plan and advocating for them and their families in its development is my personal core focus.

Janine Budding, Medicalfacts

Janine Budding

Janine Budding is Managing Director of MedicalFacts and she is a Dutch medical journalist, consultant and publisher. Janine has been a active promotor and ambassador for health 2.0 ,eHealth patient empowerment and patient participation. Janine began to promote healthcare issues in the Netherlands since 2005.

Patient participation in health care leads to lower spending on health care due to fewer specialty care referrals. Health care in cocreation with the patient will lead to cheaper and better health care through better communication between health care workers and the patient, patient will receive fewer diagnostic tests and referrals, and yield lower expenses for diagnostic testing.

A contributing factor to lower costs is increased patient participation during the visit, which reduces patients’ anxiety and perceived need for further investigations and referrals. In a eviorment of more effective patient-physician communication, physician gets more knowledge about the patient and their hughe knowlegde on their disease.

Janine focuses on women health and ethical issue for patients

Janine is an active member for of the NVEH Dutch Association for eHealth, focusing on business modeling, raising eHealth awareness of HCPs, and Patient Self management and Health 2.0. since 2006.

Specialties Blogging, liveblogging, Social Media for Healthcare, healthcareblogger, online strategies for healthcare business, patient advocacy