Patient Opinion International
Location
The classic mechanisms for users to improve services are ‘exit’ and ‘voice’. Many healthcare systems use exit and competition to drive up services. Voice by contrast has often been limited to complaints and surveys. Whilst useful these are neither fine-grained nor timely enough to drive quality at the micro-level.
Patient Opinion adapts Web 2.0 technologies in a new platform that enables Voice, that is the voices of thousands of patients, to be heard at the scale and speed of the web.
The history of Web 2.0 to date shows that it is easy for citizens to use – just hit the send button. But hard for organisations like hospitals and managers to respond to - what can you do about the photo of the dirty toilet on Ward 19 that’s been on Flickr for 6 months?
If typical Web 2.0 success stories like MySpace are driven by ‘Me’, Patient Opinion seeks to be about ‘Us’ – a platform that many parties can join and where the aim is to long-term service improvement for the benefit of all.
All opinions stay on the site for 12 months and are followed by comments from other stakeholders but not the general public. This leads to conversations that are more structured and permanent than e-discussions and more inclusive and measured than blogs.
Such conversations clearly increase the power of the patient voice whilst allowing staff and managers to put their side.
Results to date show that:
• >50% of postings are appreciative.
• Hospitals do change services as a result of postings.
• Third party payers use the data to monitor contracts with hospitals
• Our subscription model is viable and makes sure we pay attention to working with hospitals rather than to the needs of advertisers.
We believe that platforms like Patient Opinion have great potential in many different health systems and we would love to hear form people who would like to collaborate – please email me at info@patientopinion.org.uk
As this proposal suggest we are particularly interested in developing an open source pool of collaborators who can spread the costs of further software development whilst creating a set of tools that can be adapted to many different health systems.
About You
Location
Project Street Address
Project City
Project Province/State
Project Postal/Zip Code
Project Country
Your idea
Focus of activity
Service/process
Year the initiative began (yyyy)
2005
Positioning of your initiative on the mosaic diagram
Which of these barriers is the primary focus of your work?
Patients not empowered
Which of the principles is the primary focus of your work?
Center consumers in business model
If you believe some other barrier or principle should be included in the mosaic, please describe it and how it would affect the positioning of your initiative in the mosaic:
This field has not been completed
Name Your Project
Patient Opinion International
Describe Your Idea
The classic mechanisms for users to improve services are ‘exit’ and ‘voice’. Many healthcare systems use exit and competition to drive up services. Voice by contrast has often been limited to complaints and surveys. Whilst useful these are neither fine-grained nor timely enough to drive quality at the micro-level.
Patient Opinion adapts Web 2.0 technologies in a new platform that enables Voice, that is the voices of thousands of patients, to be heard at the scale and speed of the web.
The history of Web 2.0 to date shows that it is easy for citizens to use – just hit the send button. But hard for organisations like hospitals and managers to respond to - what can you do about the photo of the dirty toilet on Ward 19 that’s been on Flickr for 6 months?
If typical Web 2.0 success stories like MySpace are driven by ‘Me’, Patient Opinion seeks to be about ‘Us’ – a platform that many parties can join and where the aim is to long-term service improvement for the benefit of all.
All opinions stay on the site for 12 months and are followed by comments from other stakeholders but not the general public. This leads to conversations that are more structured and permanent than e-discussions and more inclusive and measured than blogs.
Such conversations clearly increase the power of the patient voice whilst allowing staff and managers to put their side.
Results to date show that:
• >50% of postings are appreciative.
• Hospitals do change services as a result of postings.
• Third party payers use the data to monitor contracts with hospitals
• Our subscription model is viable and makes sure we pay attention to working with hospitals rather than to the needs of advertisers.
We believe that platforms like Patient Opinion have great potential in many different health systems and we would love to hear form people who would like to collaborate – please email me at info@patientopinion.org.uk
As this proposal suggest we are particularly interested in developing an open source pool of collaborators who can spread the costs of further software development whilst creating a set of tools that can be adapted to many different health systems.
Innovation
Define the innovation
The classic mechanisms for users to improve services are ‘exit’ and ‘voice’. Many healthcare systems use exit and competition to drive up services. Voice by contrast has often been limited to complaints and surveys. Whilst useful these are neither fine-grained nor timely enough to drive quality at the micro-level.
Patient Opinion adapts Web 2.0 technologies in a new platform that enables Voice, that is the voices of thousands of patients, to be heard at the scale and speed of the web.
The history of Web 2.0 to date shows that it is easy for citizens to use – just hit the send button. But hard for organisations like hospitals and managers to respond to - what can you do about the photo of the dirty toilet on Ward 19 that’s been on Flickr for 6 months?
If typical Web 2.0 success stories like MySpace are driven by ‘Me’, Patient Opinion seeks to be about ‘Us’ – a platform that many parties can join and where the aim is to long-term service improvement for the benefit of all.
All opinions stay on the site for 12 months and are followed by comments from other stakeholders but not the general public. This leads to conversations that are more structured and permanent than e-discussions and more inclusive and measured than blogs.
Such conversations clearly increase the power of the patient voice whilst allowing staff and managers to put their side.
Results to date show that:
• >50% of postings are appreciative.
• Hospitals do change services as a result of postings.
• Third party payers use the data to monitor contracts with hospitals
• Our subscription model is viable and makes sure we pay attention to working with hospitals rather than to the needs of advertisers.
We believe that platforms like Patient Opinion have great potential in many different health systems and we would love to hear form people who would like to collaborate – please email me at info@patientopinion.org.uk
As this proposal suggest we are particularly interested in developing an open source pool of collaborators who can spread the costs of further software development whilst creating a set of tools that can be adapted to many different health systems.
Context for Disruption:
Patients see more than staff know – and certainly more than they ever use in improving health services. So we built Patient Opinion to access the collective wisdom of patients using the same Web 2.0 tools as drive MySpace and blogs. Patients can share their stories and rate the care they receive down to ward and department level.
So far so good – but why is this disruptive? When we started we thought Patient Opinion would be about feedback and evaluation. After 18 months and thousands of postings we now understand that it is about conversations, democracy and improving services by making the patient voice more audible. RSS feeds mean that stories can be directed to just the right manager or doctor. And they can tell the world how they’ve improved things (See http://tinyurl.com/2uftmx ) Right now we’re just enabling national patient groups and MPs to add their comments to particular conversations.
Patient Opinion is a successful not-for-profit social enterprise that carries no advertising and raises income via subscriptions from hospitals and 3rd party payers who use the data to improve services. Patients are better informed and supported, services improve and staff feel supported.
We are now getting frequent requests from people in other countries who want to start something like Patient Opinion. So this bid to Ashoka is to help us begin the process of turning our software and code into an open source community that could be adopted anywhere in the world. This is how it would work: groups signing up to our key principles (social enterprise, primary responsibility to patients not other stakeholders) would get access to the Patient Opinion software which they adapt for their own health systems and in return add features to the open source common code pool. Patient Opinion UK would develop a mechanism for signing-off key improvements and would work to generate a community of world-wide patient feedback platforms.
Delivery Model
We will base any international delivery model on our experience here in Britain where some 50 million people in England are served by 400 hospitals each with hundreds of Wards and departments. Populating all these with stories and ratings takes a lot of work. Much of this is done via the web of course and we spend a lot of time on publicity and raising awareness of Patient Opinion nationally.
In addition we work with hospitals and family physicians in the communities that subscribe to Patient Opinion to generate postings locally. This work is paid for within our subscription model – local work is funded by local income and this in turn means that we can guarantee at least 1,000 postings per year per hospital. Such volumes are much more useful to everyone – a thousand postings about one hospital is more use than 1000 postings about 400 hospitals.
By choosing which family physicians to work with we can also ensure that poorer populations and those without internet access can feed in their comments via free phone calls to our staff and freepost questionnaires. This means that more than half of all our postings and feedback come from the poorer side of the towns that we work intensively in.
Currently some 30 hospitals or third party payers subscribe to Patient Opinion. This represents some 4 million people and around 5-8% of the total English market. If subscriptions accrue at the current rate we should reach financial sustainability early in financial 08/09.
Key Operational Partnerships
Patient Opinion has already been contacted by colleagues in 6 different countries. Our international work would be developed through mutual collaboration with these and other interested parties.
In the UK our partners include central Government England and Regional Strategic Health Authorities who have responsibility for populations of 6-15 million people and who oversee all health services in their areas.
Patient groups also welcome both the up-to-the-minute view from the front line that Patient Opinion brings them and the opportunity to join local debates. In turn their members are a key group who feed stories into the site.
We have recently partnered an European Union fund aimed at regenerating the local economy in Sheffield where we are based. Their $200,000 equity investment in Patient Opinion is to support the development of Patient Associates – a cadre of people with long-term conditions who are thoughtfully passionate about their local hospital who will work with local hospitals to improve services using stories from the site.
Impact
Financial Model
Most websites are driven by advertising. This is unsuitable for Patient Opinion because:
• Strong threshold effects (no one advertises at low volumes) mean that income does rises only when the site is successful
• Many advertisers on patient feedback sites include personal litigation lawyers and purveyors of therapeutic nostrums of unproven worth.
Patient Opinion therefore generates income via a subscription model. This has the advantage that
• income scales with costs in each participating health community
• Value can be extracted from large volumes of stories about a few hospitals much more easily than it can from large volumes of stories about many hospitals.
• As an organisation we pay attention to the needs of providers as well as the public.
• Having many distributed subscribers (currently more than 30 organisations) reduces our dependence on a few big funders and so protects our editorial freedom.
Patient Opinion incorporated as a Company Limited by Shares in January 05. Up to March 07 95% of our income came from government start-up contracts.
Having designed, piloted and further developed the software we have been trading since April 07 and this year 90% of our income will come from subscriptions by organisations.
This year we will also extend Patient Opinion to cover mental health services in England; and acute hospital services in Northern Ireland, Scotland and Wales all of which will create additional income streams.
We do not see our international work as generating income except in so far as an open source approach to software development reduces programking costs.
We have three classes of Share holders: A shares are owned by the 4 Directors. In addition we have 20+ B shareholders who we have recruited to hold us to account: we would need their consent for example if we were to convert Patient Opinion to a for-profit model.
Finally there are non-voting C Shares. These act as an investment vehicle – currently 10% of these have been sold to a local European Union economic regeneration fund for a value of £100,000.
What is your annual operating budget?
90%
What are your current sources of revenue? (please list any sources that are foundation grants)
Subscriptions: 90%
Contracts to extend or develop Patietn Opinion software within the UK 10%
Grants - zero
In addition we have personal loans worth £38,000 and investment from South Yorkshire Key Fund (EU) of £100.000
Effectiveness
Site statistics
Several thousand people have shared their story or rated a service on the site.
Currently we receive 350,000 page views per month
Around 50% of stories are appreciative and we forward these to staff whenever we can identify them regardless of whether their organisation subscribes or not.
25% of stories are critical and 25% are mixed.
Around 5% of stories currently generate a response.
Subscriber statistics
Some 30 health service organisations subscribe. These include hospitals, 3rd party state payers and groups of family physicians and regional Strategic Health Authorities.
Wider impact
In addition we share information with a range of patient groups like Diabetes UK and are just starting to work with Members of the UK Parliament (MPs).
We have made presentations to the Prime Minister’s Delivery Unit (a key government department) and led seminars on the implications of Web 2.0 for leading policy makers in the Department of Health.
Our aim is to generate >100,000 stories by 2009. To direct these to 3000+ managers and doctors by the same time so that each story goes to just the right manager. For every 1% of stories that generate an improvement in care Patient Opinion will then be creating 1,000 patient-led improvements.
Which element of the program proved itself most effective?
Since we started Patient Opinion 2 ½ years ago we have learnt the following key lessons about being effective:
• Patients are thoughtful and reflective about their health care – a great source of wisdom and service improvement
• Tapping this wisdom using Web 2.0 tools is practical, exciting and very worthwhile as it opens the possibility of creating improvements on an ‘industrial scale’ i.e. for Patient Opinion potentially to support many thousands of improvements across a given health system.
• A subscription based model works and is very suitable for social enterprises and other organisations without enough capital to sustain themselves till ‘web lift off’.
• Structured, public conversations on line can indeed drive up quality.
• The most difficult task is getting staff at hospitals and other organisations to understand the potential of sites like Patient Opinion – they are too often too busy doing other things.
• There is significant international interest in spreading Patient Opinion-like models to other countries. We would love to hear form any one who is interested in collaborating with us – email us at info@patientopinion.org.uk
Number of clients in the last year?
In 2006/07 we had 9 subscribers
in 2007/08 we have 30 subscribers.
What is the potential demand?
The are around 300 organisations runing hospitals in England plus 150 3rd party payers (Primary Care Trusts).
In addtion there are a further 10-15 hospitals and organisations in Northern Ireland, Scotland and Wales who we are either wroking with curently or are potential customers.
Finally we plan to extend Patient Opinion to mental health services this year ( a further 90 provider organisations across the UK) and to family practictioners and ambulatory care in 2008.
Scaling up Strategy
Our subscription model means that income scales with subscriptions. This frees us from the tyranny of the internet where pressure to secure advertising means that organisations live or die by the number of postings they can generate.
Subscriptions also mean that we can work with whole health communities both to generate a more balanced selection of stories and to help turn more stories into improved services.
The key challenges for growth are balancing the following:
• Driving up postings and site activity
• Managing cash flow
• Developing the internal capacity to deliver services.
All these remain on-going challenges and will be for any sister organisation round the world that wishes to build a similar site. Long-term plans to develop an open source model for software development and thus sharing costs therefore make a great deal of sense
Stage of the initiative:
1
Expansion plan:
Our current business plan defines seven key business objectives for the next three years:
• Drive use at the site to achieve in excess of 100,000 postings by 2009
• Learn from customers about what they want and continue to deliver it with the aim of securing subscriptions covering at least 40% of all Trusts, PCTs or other NHS organisations by 08/09; and deliver a year-on-year renewal rate by Trusts in excess of 80%
• Develop cost-effective ways to deliver patient centred editorial capacity via a strong and vibrant Patient Associate programme.
• Grow the financial and internal capacity within the organisation to support this level of rapid growth
• Learn how to generate more improvements in services from patients’ comments on the site through developing Patient-Led Appreciative Inquiries
• Develop the culture and imagination of the organisation in line with our core values so as to maximise the potential of both staff and the Patient Opinion platform.
• Explore possibilities of building an international family of patient feedback platforms (Patient Opinion International) with the aim of providing inter-country support and learning; and developing an open-source software development programme that serves all communities whilst being adaptable to all health systems
Origin of the Initiative
About 5 years ago I was sitting on eBay looking at the reputation scores of buyers and sellers. Just as these reputations essentially keep players on EBay honest I realised that patient-generated reputations could be just as powerful in terms of driving quality in health services.
This Entry is about (Issues)
Sustainability
What are your two main challenges to finance the growth of your initiative
Challenge One: managing cash flow and lack of working capital. As a not-for-profit it always feels as though you are running from one cash flow crisis to the next. Government policy in the UK recognises this porblem but has yet to really solve it.
Challenge Two: this lack of working capital makes it hard to manage rapid growth, or exapnd into new service areas, especially of course when this callls for up front investment.
On the other hand there is a clear 'social entrepreneur' premium. For us this means that hospitals and patients undoubtedly view us in a more positive light than they would a for-profit company; and the litigation risks that Pateint Opinion carry are reputedly reduced by our not-for-profit status. (Happily we have never had to test this hypothesis yet).
How did you hear about this contest and what is your main incentive to participate?
Conversation with Silvia Giovannoni of Ahsoka UK office following Skoll Conference in Oxford UK March 2007.
The Story
Do you have an annual financial statement?
Full financials available on request
Do you currently have an annual financial statement that tracks profit/loss?
My understanding is that international entrants are eligible for an award of $5,000. If we won we woudl use this to initiate international development with interested colleagues around the world.
Please describe the amount (and/or type) of funding you need to implement your initiative, at year 1 and at year 5.
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Comments
Donna Daniel, EdD - I appreciate anything a hospital or large/corporate medical group do to truly give a voice to the individuals and families it serves or treats. I would like to see this kind of 'feel good' tech given a place in most medical treatment facilities, so that feedback is gathered and - hopefully- given administrative and staff attention, such as the old 'suggestion box' was designed to do.
I'm not sure I can support the funding for this being gathered from an outside source, however, when the means for any new medical facility to obtain it is fiscally available in their profits. Let stake-/shareholders cry out for this, then it will be paid for, then let this funding go to projects that will not be so readily accepted, although it is certainly a great idea, whose time came decades ago but was often ignored in the rush to expand and develop. I wish you great success in this innovative project, and your patients no doubt have benefitted greatly!
Dear Dr. Hodgkin:
The feedback loop that you have created for patients in the UK, we feel, have a very low barrier to implementation in most other countries, especially anglophone countries. You indicate in your entry form that the funds from the award will go towards your expansion outside the UK. We would love to hear more about your expansion plans. (perhaps to the U.S.?)
Thank you in advance for your response.
Changemakers Team
Thanks for the comments.
You're right the initial entry costs for Patient Opinion in other countries could be very low. For us the most significant initial barrer was indeed the costs of software development so if we can get the kind of mutually supportive, open source model that we are proposing in this competition competition working, we feel that there would be some great benefits all round: a growing family of international and mutually supportive, value-driven sites; all contributing to a pool of ever-improving software.
That said we have found - that at least in the UK context - the technical platform is only the beginning: you need a business model that supports the costs of moderation and even more importantly is coherent with the patient-centered values of the business. We also work surprisingly hard at generating postings - from experience here in England the motivation for posting about health (which is typically anxiety or anger-driven) is very different from the desire-driven archetypal use of the web or the ego-driven postings on YouTube or MySpace.
And it is not axiomatic that hospitals will act on feedback to improve services even for highly critical postings.
So if we won the competition how would we use the $10,000? We would identify people in a range of countries who wanted to start a platform similar to Patient Opinion (we know of 5 already but if there is any one out there who wants to join in, just post a comment here).
We would then develop with them the basic ground rules for an open source development model. This would include getting clarity about the values and business model of any member system; how software developments were to be shared; and how progressive version agreement for core software was decided.
The basic deal would be that Patient Opinion would release its core software (written in ASP.net) to approved social enterprise partner organisations in other countries. In return we would expect partners to contribute programming improvements on an open source basis; agree to abide by versioning and development procedures for the software; and to share all the 'softer' aspects of their development and learning (since these are actually what turns Patient Opinion from another snappy web platform into an on-line, scalable way to develop democratising, self improving conversations that really can disrupt exisiting ways of doing health care).
So we really are interested in hearing from anyone, anywhere who is in position to begin such a process in their own country - just add your comment below.
So far as the US goes we would love to see Patient Opinion happening in the US but we have not proposed this as part of our submission as we feel we would definitely need a partner organisation who understood the complex and very special nature of US health care. The risk of being sued in the US has also made us pause - I see that a Texan hospital has just successfully won a court order forcing a US internet provider to release names and details of a blogger who has allegedly defamed it ( http://tinyurl.com/2s2gj7). But if there is a potential US partner out there then please do get in touch - we'd love to help make something happen.
Of course the whole point of our proposed open source model is to promote mutual learning about how to overcome these difficulties. Citizen-donated data about health at this scale is a new class of data and no one knows how best to use it (and that includes governments, hospitals, patient groups and Web 2.0 gurus). It is really important that value-driven civil society occupies this space as its quite possible to imagine unethical sites, funded by a variety of problematic advertising and based in lax legal jurisdictions, providing sites that are postively toxic to health care improvements and to staff.
We know that we at Patient Opinion are still a long way from having all the answers. What we want is a to help create a family of supportive organisations around the world who together can learn how to ensure that the disruptive and scalable power of web-based patient feedback really does improve health care.
Paul Hodgkin, CEO Patient Opinion and Family Physician
Dear Dr. Hodgkin:
Yet another question from us! Your feedback mechanism, unlike many other patient driven medical feedback websites that we've seen, appears to have the incentives established for the medical industry to actually respond. You mention this very briefly in your entry. Could you expand on how the mechanism works and how the hospitals or doctors respond to the bad or good feedback that they receive?
Thank you in advance for your response!
Changemakers Team
Paul Hodgkin, CEO Patient Opinion and Family Physician
You're right - getting/helping/persuading hospitals to respond and to improve services is crucial. We're getting their but have not solved the whole problem yet. Things that we know help to encourage hospitals to improve include:
a. making the site easy to use: RSS feeds take comments to just the right person. We provide help translating bureaucratic responses into the conversational tone needed for the web.
b. stressing how the system can save money/reduce pressure on busy staff: the site can reduce complaints and - perhaps - litigation. (If we can show this then clearly it would be self funding from a hospital perspective)
c. involving other stakeholders increases pressure to respond. So we set up RSS feeds to local government departments, third party payers, local Members of Parliament etc. The fact that they can join the conversation and that their comments stay public, linked to specific services and departments, encourages hospitals to respond.
d. We are just beginning to develop patient-led initiatives: groups of patients with our support call a meeting of managers, clinicians and third party payers to discuss particular problems identified on the site. Since patients are always being told to be healthier we are experimenting with holding these in gyms (come and swim with us first!). The meetings are led ad run by patients and Patient Opinion and aim to a. disrupt the traditional relationships between these players and b. be unrelentingly positive (we, the patients, want you to be better so how we help? what are your strengths). The underlying method is Appreciative Inquiry. At the end of the meeting we post up conclusions on the site, linked to the service in question so that outcomes and agreements are immediately visible. We try and set time scale that reflect human time rather than health service planners time - i.e. doing something in weeks rather than months or years.
Overall the lesson is that there is no single magic bullet - a lesson learnt over and over again in studies that aim to improve health services. However it is also clear that the structured, public, transparent conversations that are held on the web for a year and publicly linked to a named ward or service do have considerable bite.
What’s more doctors and other staff whilst apprehensive at times appreciate that a. web feedback in one form or another is coming and b. doing it this way is helpful and constructive
Your approach to promoting reflection and change within the NHS seems to me to be well worth developing. I actually had a "eureka" moment when I learnt about what you are upto. Have you tried to share the concept and the success of this approach to NHS managers through say the Health Services Journal?
Comments
Donna Daniel, EdD - I appreciate anything a hospital or large/corporate medical group do to truly give a voice to the individuals and families it serves or treats. I would like to see this kind of 'feel good' tech given a place in most medical treatment facilities, so that feedback is gathered and - hopefully- given administrative and staff attention, such as the old 'suggestion box' was designed to do.
I'm not sure I can support the funding for this being gathered from an outside source, however, when the means for any new medical facility to obtain it is fiscally available in their profits. Let stake-/shareholders cry out for this, then it will be paid for, then let this funding go to projects that will not be so readily accepted, although it is certainly a great idea, whose time came decades ago but was often ignored in the rush to expand and develop. I wish you great success in this innovative project, and your patients no doubt have benefitted greatly!
Dear Dr. Hodgkin:
The feedback loop that you have created for patients in the UK, we feel, have a very low barrier to implementation in most other countries, especially anglophone countries. You indicate in your entry form that the funds from the award will go towards your expansion outside the UK. We would love to hear more about your expansion plans. (perhaps to the U.S.?)
Thank you in advance for your response.
Changemakers Team
Thanks for the comments.
You're right the initial entry costs for Patient Opinion in other countries could be very low. For us the most significant initial barrer was indeed the costs of software development so if we can get the kind of mutually supportive, open source model that we are proposing in this competition competition working, we feel that there would be some great benefits all round: a growing family of international and mutually supportive, value-driven sites; all contributing to a pool of ever-improving software.
That said we have found - that at least in the UK context - the technical platform is only the beginning: you need a business model that supports the costs of moderation and even more importantly is coherent with the patient-centered values of the business. We also work surprisingly hard at generating postings - from experience here in England the motivation for posting about health (which is typically anxiety or anger-driven) is very different from the desire-driven archetypal use of the web or the ego-driven postings on YouTube or MySpace.
And it is not axiomatic that hospitals will act on feedback to improve services even for highly critical postings.
So if we won the competition how would we use the $10,000? We would identify people in a range of countries who wanted to start a platform similar to Patient Opinion (we know of 5 already but if there is any one out there who wants to join in, just post a comment here).
We would then develop with them the basic ground rules for an open source development model. This would include getting clarity about the values and business model of any member system; how software developments were to be shared; and how progressive version agreement for core software was decided.
The basic deal would be that Patient Opinion would release its core software (written in ASP.net) to approved social enterprise partner organisations in other countries. In return we would expect partners to contribute programming improvements on an open source basis; agree to abide by versioning and development procedures for the software; and to share all the 'softer' aspects of their development and learning (since these are actually what turns Patient Opinion from another snappy web platform into an on-line, scalable way to develop democratising, self improving conversations that really can disrupt exisiting ways of doing health care).
So we really are interested in hearing from anyone, anywhere who is in position to begin such a process in their own country - just add your comment below.
So far as the US goes we would love to see Patient Opinion happening in the US but we have not proposed this as part of our submission as we feel we would definitely need a partner organisation who understood the complex and very special nature of US health care. The risk of being sued in the US has also made us pause - I see that a Texan hospital has just successfully won a court order forcing a US internet provider to release names and details of a blogger who has allegedly defamed it ( http://tinyurl.com/2s2gj7). But if there is a potential US partner out there then please do get in touch - we'd love to help make something happen.
Of course the whole point of our proposed open source model is to promote mutual learning about how to overcome these difficulties. Citizen-donated data about health at this scale is a new class of data and no one knows how best to use it (and that includes governments, hospitals, patient groups and Web 2.0 gurus). It is really important that value-driven civil society occupies this space as its quite possible to imagine unethical sites, funded by a variety of problematic advertising and based in lax legal jurisdictions, providing sites that are postively toxic to health care improvements and to staff.
We know that we at Patient Opinion are still a long way from having all the answers. What we want is a to help create a family of supportive organisations around the world who together can learn how to ensure that the disruptive and scalable power of web-based patient feedback really does improve health care.
Paul Hodgkin, CEO Patient Opinion and Family Physician
Dear Dr. Hodgkin:
Yet another question from us! Your feedback mechanism, unlike many other patient driven medical feedback websites that we've seen, appears to have the incentives established for the medical industry to actually respond. You mention this very briefly in your entry. Could you expand on how the mechanism works and how the hospitals or doctors respond to the bad or good feedback that they receive?
Thank you in advance for your response!
Changemakers Team
Paul Hodgkin, CEO Patient Opinion and Family Physician
You're right - getting/helping/persuading hospitals to respond and to improve services is crucial. We're getting their but have not solved the whole problem yet. Things that we know help to encourage hospitals to improve include:
a. making the site easy to use: RSS feeds take comments to just the right person. We provide help translating bureaucratic responses into the conversational tone needed for the web.
b. stressing how the system can save money/reduce pressure on busy staff: the site can reduce complaints and - perhaps - litigation. (If we can show this then clearly it would be self funding from a hospital perspective)
c. involving other stakeholders increases pressure to respond. So we set up RSS feeds to local government departments, third party payers, local Members of Parliament etc. The fact that they can join the conversation and that their comments stay public, linked to specific services and departments, encourages hospitals to respond.
d. We are just beginning to develop patient-led initiatives: groups of patients with our support call a meeting of managers, clinicians and third party payers to discuss particular problems identified on the site. Since patients are always being told to be healthier we are experimenting with holding these in gyms (come and swim with us first!). The meetings are led ad run by patients and Patient Opinion and aim to a. disrupt the traditional relationships between these players and b. be unrelentingly positive (we, the patients, want you to be better so how we help? what are your strengths). The underlying method is Appreciative Inquiry. At the end of the meeting we post up conclusions on the site, linked to the service in question so that outcomes and agreements are immediately visible. We try and set time scale that reflect human time rather than health service planners time - i.e. doing something in weeks rather than months or years.
Overall the lesson is that there is no single magic bullet - a lesson learnt over and over again in studies that aim to improve health services. However it is also clear that the structured, public, transparent conversations that are held on the web for a year and publicly linked to a named ward or service do have considerable bite.
What’s more doctors and other staff whilst apprehensive at times appreciate that a. web feedback in one form or another is coming and b. doing it this way is helpful and constructive
Your approach to promoting reflection and change within the NHS seems to me to be well worth developing. I actually had a "eureka" moment when I learnt about what you are upto. Have you tried to share the concept and the success of this approach to NHS managers through say the Health Services Journal?