Adoption, non-adoption, and abandonment of a personal electronic health record: case study of HealthSpace
BMJ 2010; 341 doi: https://doi.org/10.1136/bmj.c5814 (Published 17 November 2010) Cite this as: BMJ 2010;341:c5814
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The study of HealthSpace by Greenhalgh et al. [1] and the rapid
responses so far published make interesting reading from a personal as
well as a professional point of view, as I am a healthcare librarian who
also happens to be a diabetic patient with a HealthSpace basic account.
My experience of the basic HealthSpace account (all that is currently
available to me) is generally negative. It promises much but delivers
little; there is insufficient context-sensitive explanation of the
advanced account; the Help/ Frequently Asked Questions (FAQ) section is
inadequate and confusing. I feel as though I am trying to retrieve a ball
stuck up a tree but do not have a long enough stick to reach it. I
consider my computer and Internet skills to be very good (I specialise in
electronic resources), so if HealthSpace has this effect on me I can well
imagine the frustration of other patients.
I have some additional concerns about HealthSpace that were not
addressed in the Greenhalgh study:
(a) Contrary to what is stated in FAQ 8, it is possible to create a
HealthSpace account for someone else.[2] You can create as many fictitious
basic accounts as you like, as long as each has a valid e-mail address. I
expect this to be possible with general social networking websites, but do
not consider it appropriate for an official, government-supported site for
the management of one's personal health.
(b) The same NHS Number can be used multiple times. In my view it
would be more sensible for the NHS Number to be a requirement of the
original registration process rather than added to the user's profile
after registration - and only able to be used once, as with e-mail
address.
(c) It is possible to create and use a fictitious NHS Number, as
there is no verification or validation of what is actually entered on the
user's profile.
(d) Because of (b) and (c) I see no way for a properly secure link to
be made to a Care Record. One could argue that Summary Care Record access
is only part of the advanced account which is only obtainable by a select
few who have to register somewhere in person and prove their identity, but
this registration process would be so much easier if the NHS Number had
been mandatory and verified and single-use at the Basic Account
registration stage.
Aside from the vicissitudes of the HealthSpace website, the strategy
and policy documents relating to HealthSpace reveal an arrogant and
paternalistic attitude of "The Powers That Be" towards patients, together
with an assumption that computers and the Internet are magic. I certainly
do not feel liberated or empowered or given more control by the idea that
one day I will be able to have an advanced account with a Secure Login
Card. I am not alone in having concerns about relying on "black stripes
and inaccessible microchips" and introducing technology for its own
sake[3]. I personally doubt that the current Department of Health
consultation exercise[4] will do much to change the situation.
References:
1. Greenhalgh T, Hinder S, Stramer K, Bratan T, Russell J. Adoption,
non-adoption, and abandonment of a personal electronic health record: case
study of HealthSpace. BMJ 2010;341:c5814.
2. https://www.healthspace.nhs.uk/help.aspx#Q8 (accessed 29 November
2010)
3. Fawdry, R. Assessing the consequences of changing childbirth.
Smart cards are expensive and easily damaged. BMJ. 1995 Apr 22;
310(6986):1066-7.
4. Department of Health. A revolution for patients. Consultations on
an information revolution and greater choice and control.
http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_120607.pdf
(accessed 29 November 2010)
Competing interests: No competing interests
In the same population as Greenhalgh et al report an unimpressive
response to Healthspace, over 11,000 patients of UK renal units are active
users of an online system Renal PatientView (1) that allows them to see
live, unscreened test results along with information about their diagnosis
and treatment, and in some centres clinic letters too. Enrolment is up to
over 50% in some units, and users log in an average (median) of twice
every month.
The article points toward the success of Kaiser Permananente's online
access system in the USA, in a rather different healthcare environment,
but our experience suggests that it is the system, rather than the nation,
that makes the difference. Interest in online access to records in the UK
is not necessarily low.
Healthspace has two major problems, both of which are recognised by
both its managers and its evaluators. First, it is difficult to get a
login and to use it. Second, there isn't much interesting content. At
least in part the slow development of HealthSpace may have been because of
professional (rarely patient) resistance to making information available
in this way. Given its state of development, it was premature to
commission such a substantial evaluation. There wasn't much to evaluate.
When patients can see things they want to see, responses to online
records access are very strongly positive. Similar positive responses to
ours, but not yet such high levels of uptake, are reported from records
sharing initiatives in primary care in the UK (2,3). Greenhalgh's
previous theoretical survey on Healthspace access made the observation
that patients' interest in access rose, and concerns about security were
reduced, if they had a chronic illness (4). But a major reason that there
is little practical evidence for enthusiasm for access in the UK must be
that patients see so little on offer.
Our experience is that having better informed patients is liberating
for patients and staff. Renal PatientView was developed and driven
forward by patients and staff. In each unit as it has been installed,
most prior concerns turn out to be exaggerated or unfounded.
The observations in this study should not be used to hinder efforts
to give patients ready access to their personal healthcare data.
1. See www.renalpatientview.org and www.renal.org/rpv
3. www.emis-online.com/patient-record-access
4. Greenhalgh T, Wood GW, Bratain T, Stramer K, Hinder S. Patients'
attitudes to the Summary Care Record and HealthSpace: qualitative study.
BMJ 2008;336:1290-5
Competing interests: No competing interests
We read with interest Greenhalgh et al's analysis of the failure to
engage with patients in their use of HealthSpace. Our own efforts,
predominantly based in the United States (www.patientslikeme.com), have
focused first on those patients with chronic and life-changing illnesses
who have an unmet need that can be fulfilled by the web. In particular, we
have built communities for patients with conditions in which there are no
effective treatments (e.g. motor neurone disease), where symptoms are
complex and quality of life is impaired (e.g. multiple sclerosis), and
where patients are unlikely to personally know other patients with their
condition (e.g. epilepsy).
All of the data in our system is self-reported, which offers both
advantages and disadvantages. In its favor, there is no need to interface
with the multitude of IT systems present in the US, nor with the
accompanying variability in laws, policies, and practices that go with
them. By ensuring data is submitted by patients and not healthcare
providers, our company is also not beholden to health-specific data
protection regulations. We believe that in creating patient-reported
outcomes (PROs) and tools that are tailored to a specific disease, we
demonstrate customized value to patients in their first contact with the
system.
Disadvantages include uncertainty over quality of diagnosis (95% of
our users report being diagnosed at the time of registration), uneven
levels of participation, and an inability to ascertain certain objective
values such as labs, clinical impressions, or service utilization in a
robust fashion.
It may be that patients are coming to expect greater levels of
connectivity from online tools, as a result of exposure to social sharing
tools such as Facebook. Indeed, we have found that users of our system
identify a number of benefits specifically related to *sharing* their
health data with others (Wicks et al, 2010). Conversely, a system such as
HealthSpace is like a social network where you can only see your own
information - for a user this is not particularly informative or engaging.
Our system's emphasis on life-changing conditions puts the
risk/benefit trade-off of sharing health data into a different category
than a national system with equal access to all citizens. While a
nationwide system for appointments and communication with GPs should
certainly be a priority for increasing convenience and satisfaction, we
believe a separate system with additional functionality specifically for
patients and carers managing complex chronic conditions could be of great
value to the NHS.
Finally, of all the lessons learned in the HealthSpace case study, we
would most strongly endorse the necessity of "agile redesign in response
to user feedback". A successful health information system should be like
the human body itself, constantly renewing its cells, organs, and systems
to maintain vitality.
Sincerely
Paul Wicks, PhD.
Wicks P, Massagli M, Frost J, Brownstein C, Okun S, Vaughan T,
Bradley R, Heywood J (2010) Sharing Health Data for Better Outcomes on
PatientsLikeMe, Journal of Medical Internet Research 12(2):e19
Competing interests: PW is a paid employee of PatientsLikeMe and owns stock options in the company. PatientsLikeMe's R&D team has received funding from Avanir, Novartis, and UCB.
Giving patients access to view their records has bee proved to have limited appeal to the healthy, and really only generally attractive to some of those with long term conditions, carers, and the obsessive. This has been proven to be the case where patients are offered access to their actual GP records, which at least contain all their primary care, and the important parts of their secondary care, medical records. HealthSpace has to be populated in part by the patients themselves, and as you report, they can't see the point if they are the only ones viewing a limited dataset. Being based on the SCR, that limited dataset cannot be guaranteed to be up to date anyway; any data entered whilst the GP's smartcard was out of its slot will not have been extracted until such time as the card is in place and the record opened again.
The model that is now developing, similar to the Kaiser Permanente model, is to forget expensive outside databases, and let the patient have direct access to their GP record, and control who else can see it. If they are admitted to hospital, they can give access to the clinicians treating them. It would be perfectly possible to build a portal pulling together the different parts of the patient record, guarded by needing patient consent to view, and a record in the audit trail that consent was given, as well as who viewed what, where and when. Indeed the Healthcare Gateway now being set up linking data in systems such as EMIS, In Practice Systems, iSoft, System C and Adastra is working on that model.
What is needed is the mandating of interoperability between all clinical systems, with rigorous pre-agreed standards applied. That is the only way to give patients control over access to their records. This is not the same thing as total control over their records, which would not be safe. Patients must not be allowed to limit content or insert unchecked data or remove items from their records, because decisions on their treatment, past and future have been made on the record as it stood at the time.
Allowing patients to view their medical records will never be a huge vote winner. But what would be, would be the ability for every patient in the UK to be able to log in at any time of day and book an appointment with the GP of their choice, at a time to suit. It would be the ability to order a repeat prescription at the same time, or send a secure message saying 'I've got the same skin problem recurring that I had six months ago, (scanned photo attached) please could I have the same cream, which cleared it up well?" or "I didn't understand everything you told me yesterday in surgery, what is the next step in my treatment?"
In these busy times, getting to the surgery during working hours is often difficult, especially if you are not ill. The ability to do these things, and to even to pre-register with a GP and book a new patient check on line or through your TV, is going to be an extremely attractive option.
It might even prevent the need to look at using call centres for GP appointments, thank goodness it looks as though that idea has now been shelved.
It will be interesting to see what notice is taken of your most recent review, I really hope that those that need to understand the issues will take it on board.
Competing interests: No competing interests
We read with interest Greenhalgh and colleagues evaluation of the
HealthSpace platform.1 The publication of this research coincided with the
release of an iPhone App that we have recently developed at Imperial
Academic Health Science Centre. The Wellnote by Dr Darzi App [available
for free from iTunes] lets users record their medical details, medications
and search for local NHS services through the medium of a smart phone.
Smart phones are mobile phones that offer more advanced computing ability
and interactivity than a basic handset. The public response to this
appears to be sharp contrast to the findings provided by this evaluation.
The App has generated a lot of interest from a broad range of users and is
being widely used.
We believe that demand does exist for technology that empowers the
public to take ownership of their health, but that it may come in a range
of different forms to what has previously been envisaged. 'An Information
Revolution' elaborates on the Governments agenda for helping people access
health information that is 'informing, engaging and empowering'.2 The
report - like Greenhalgh's paper - suggests that a static, one size fits
all approach is unlikely to develop the high degree of engagement that is
being sought. Using smartphone technology is one suggestion as to how
information services could be enhanced and made more relevant.
1. Greenhalgh T, Hinder S, Stramer K, Bratan T, Russell J. Adoption,
non-adoption, and abandonment of a personal electronic health record: case
study of HealthSpace. BMJ 2010;341:c5814.
2. An Information Revolution: a consultation on proposals. London:
Department of Health, 2010.
Competing interests: All three authors have recently worked on the development of a smartphone App - Wellnote by Dr Darzi. The App is free to the public and not for profit.
Using ethnicity data to inform the development of novel health technologies
The article by Greenhalgh et al identifies patient involvement as an
essential aspect of chronic disease management in primary care, yet the
design and implementation of the HealthSpace program failed to incorporate
patient values and attitudes into the program design, thus limiting its
ultimate appeal and functionality.
As part of the continuing agenda of empowering patients, an important
goal of the electronic health record programme is to improve care for
those with low-literacy and limited English, and ultimately, increase
equity of health care across the population (1). This goal is highly
relevant to patients in inner east London, where over half of the
population are of non-White ethnicity and social deprivation is uniformly
higher than the national average. The failure of the program creators to
engage with the patients, as described in the article, may exacerbate
existing inequalities in health care utilization and access.
Improving patient engagement requires a variety of responses, this is
probably most true in areas of the country which are ethnically and
socially diverse, and where tailored approaches to disease management are
vital to improving the care pathway.
In east London, we have examined uptake of the partner technology to
HealthSpace, the Summary Care Record, to see how opt out rates differ by
ethnicity, age, sex, and social deprivation. This analysis is only
possible because of the high level of self reported ethnicity at practices
in inner east London, where over 87% of the adult general practice
population has ethnicity recorded.
Analysis of all patients over the age of 16 registered with general
practice in the east London PCT of Tower Hamlets found that 1.05% had
formally opted out of the electronic summary care record. This is in line
with the findings of the main report which showed 0.81% of 600,000
patients had opted out of the programme (2).
We conducted an adjusted logistic analysis which showed that women
were significantly more likely to opt out than men. South Asians were
significantly less likely to opt out than White or Black patients
(adjusted Odds Ratio compared to White groups 0.58 (95%C.I. 0.55 - 0.66),
and more deprived patients were significantly more likely to opt out than
less deprived groups.
Figure 1 illustrates opt out rates by age group, showing high rates
in the young adult population.
Understanding responses such as this may inform future iterations of
the HealthSpace program, or its descendants.
References:
1. Greenhalgh T, Stramer K, Bratan T, Byrne E, Russell J,
Potts HW. Adoption and non-adoption of a shared electronic summary record
in England: a mixed-method case study. BMJ. 2010; 340:c3111.
2. Greenhalgh T, Stramer K, Bratan T, Byrne E, Russell J,
Hinder S, et al. The Devil's in the Detail: Final report of the
independent evaluation of the Summary Care Record and HealthSpace
programmes. London. University College London 2010.
Figure 1.
Competing interests: No competing interests