In April, Microsoft announced it would shut down the HealthVault service in November. This was the USA’s last web-based personal health records offering and as a result, users were offered migration to GetRealHealth and FollowMyHealth.
The following week, GetRealHealth was sold for $11 million, a sad outcome for a company that pioneered its market since 2001. That was the USA’s last EHR-independent patient portal offering. FollowMyHealth, the US EHR-independent patient portal acquired by Allscripts, has yet to roll out at scale with providers not using Allscripts. Avado, the US EHR-independent patient portal acquired by WebMD in 2013 for $20-30 million, continues to be dormant and its founder left in 2015.
Let’s look at this in more detail but firstly, some quick definitions. A patient portal allows a provider to share data with a patient. A personal health record (PHR) allows patients to add and store data.
A true patient portal – like Patients Know Best, GetRealHealth and FollowMyHealth, shares data across providers’ EHRs and it includes PHR data from each patient. But the vast majority of US customers only rolled out data from their own EHR, i.e. a hospital portal not a patient portal. Many physicians feared that access to PHR data would make them liable for acting on the data so refused to switch on PHR functionality, reinforcing that this a hospital portal.
The US failure was inevitable, following the UK’s earlier failure
The UK’s 2002 National Program for IT (NPfIT) failed because of its top-down approach to buying technology (e.g. hospital EHRs) and the government-led creation of technology (e.g. the NHS HealthSpace PHR). That’s why I left the UK in 2002 to continue my informatics training in the private-led technology market of the USA. However, I also left the USA in 2008 because I believed their private-led healthcare market was going to fail with patient portals and PHRs. Only the UK’s NHS healthcare market could prove this technology delivers safer care, lower costs and happier patients. I could see that other countries would then adopt the technology based on evidence from the NHS.
To get these benefits required four things:
- Government-led true patient portal: safe care requires data to be shared across providers about each patient. When North West London’s (NWL) 16 hospitals began sending their data into PKB in 2016, they had access to data from 15 other hospitals outside of NWL. General Practitioner and mental health providers also switched on their data and patients were delighted to see their health care joined up. This NHS approach was the first time in the world that data about patients was placed under the control of patients on a population scale.
Only the NHS could push for this approach in the beginning. By contrast, as I did my research on patient portals in the USA, hospital CIOs asked me: why would I share my customers’ data with my competitors? Their hospital business models prevented them from doing the right thing, as Avado, GetRealHealth and FollowMyHealth discovered.
- NHS safety culture for using PHRs with EHRs: safe care also needs data combined in real-time from patients and professionals. When East Surrey Hospital’s inflammatory bowel disease team tracked patients’ symptoms while showing CRP (C-Reactive Protein) test results, the hospital could use better, more cost-effective drugs, had fewer appointments and prevented operations. The Kent, Surrey & Sussex Academic Health Science Network evidenced £4 million / year in savings.
US providers have focused on tick-box compliance with government legislation to show data for patients and were too concerned about the liability of seeing patients’ data to incorporate this into care at scale.
- Private sector innovation: by 2008 the UK government had learned the perils of centralisation of procurement and switched to a market-based approach. In 2012, it shut down the PHR system it had developed as “too difficult to use”. The 2018 launch of the NHS App is for an NHS product that sign-posts the right locally-bought privately-built software offerings for patients.
In 2008, US giants Google and Microsoft were thought to be the ones to build and bring such offerings to the world. They might have failed as giants but so did the hundreds of start-ups which launched in the years to follow. This is normal and desirable: lots of different approaches compete in the private sector to gain customers’ adoption. PKB was no exception, we too had to prove the benefits in every contract.
- Mission-led trust-building: health care data needs special handling. It is valuable, so lots of companies want access to it. It is private, so patients want as few parties as possible to have access to it. It is financially tempting to promise not to share and then to switch, so patients and providers do not trust private companies to withstand such temptation.
So PKB built trust with a triple-lock. Firstly, we were founded as a social enterprise in 2008, recognised by UnLtd that year, and in following years Nesta, the National Lottery, Ashoka and, most recently, B Corporation. This was because, secondly, every contract we sign with a health care provider says that the copy of data we get about a patient is owned by the patient (not by PKB and not by the provider). Thirdly, we immediately encrypt that copy so that only the patient and provider can decrypt it. PKB has no access to the data so cannot do anything with it. We simply get paid to store the data under the control of the patient.By contrast, Google and Microsoft’s PHR offerings launched in 2007 with no transparent business model. So what was the end game? They might eventually sell data or commercialise. Or they might switch on charges for providers which had not budgeted for this but were now trapped. Or they genuinely were giving away these infrastructures in which case they might stop one day as Google did in 2011 and Microsoft did this year. Start-ups struggled further to build trust, especially with venture capital backing from investors who had previously backed data-monetisation business models like those of Facebook.
HealthVault’s shutdown shows the UK (not the USA)
is the model market for PHRs
The success of the NHS will be copied by other countries
Other countries are now looking to the UK’s NHS as the model for successful delivery of patient portals with PHRs. With the data on outcomes, you do not need to be the NHS to adopt the model of patient control but you did need the NHS to show the outcomes in the first place. Now the NHS is going faster at adoption with regional and national patient portal contracts.
This is because NHS regions are realising that patient portals release more cash, more quickly than shared care records. IT department-led technology adoption had focused on integrated digital care records (IDCRs) regionally aggregating data from institutional EHRs. But clinically-led technology adoption recognised that the real benefits come from working with patients with long term conditions to self-assess and self-manage their care. Patients need to see the data to look after themselves and patients looking after themselves is far more cost-effective than professionals looking at an IDCR. PKB has backed this trend with a gainshare model where our revenues are a share of the cash released from patients going digital.
For patient control over vendor lock-in – PKB is a match
For those relying on HealthVault, PKB is the likely solution. PKB’s programming interfaces allow you to easily read and write data in a patient’s record. This is a sustainable business model with population-wide customer contracts and global expansion from the UK and EU customer bases.
We use these programming interfaces for our own user interface so they are core to serving our customers rather than compliance for getting through procurement. When partner companies use our API, we each deliver a better experience to our customers and patients, so all do better from these partnerships. That is why Current Health, HealthUnlocked, Healthyio, MSK Assist and others integrate with PKB. We all have the same vision to join-up healthcare for patients.
If you’re looking for a proven patient portal in your institution or region, contact our team to see how we can help.