Experiences and Attitudes of Patients Reading their Medical Records

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There is a relatively large number of studies on how different patient groups access their medical records online and their attitudes to a prospective introduction of new online e-health services (Ammenwerth et al., 2012) and the use of online health information (Palsdottir, 2011; Ross et al., 2005 ). In contrast, there is considerably less research on how patients utilise the possibilities to access paper copies of their medical records, who are the recurrent and non- recurrent users of these services and what is the impact of these non-digital health information practices to the patients’ attitudes to the introduction of new online access services. The aim of this presentation is to analyse how recurrent and non- recurrent ordering and reading of medical records relate to their use and to the patients’ health information practices and expectations of new online access services. The study is based on a combined postal and web survey of a simple random sample of 1000 patients who ordered a paper copy of their medical records from the Uppsala County Council (Sweden) with a final analysed sample of (N=) 354 returned questionnaires. The study shows that there are significant differences between the groups of patients who ordered a copy of their medical record for the first time and those who had ordered it once or multiple times before.

Health & Medicine Business

Experiences and Attitudes
of Patients Reading their
Medical Records
differences between readers and recurrent readers

Isto Huvila1,2, Mats Daniels1, Åsa Cajander1
and Rose-Mharie Åhlfeldt2

1. Uppsala University
2. School of Business and Economics, Åbo Akademi University
3. University of Skövde

Copyright © Middle Earth Enterprises and New Line Productions

Empirical study

•  Postal survey with possibility to answer anonymously
on the web

•  June-August 2012

•  Mailed to 1000 patients, ﬁnal sample N=354 (35,3 %)

–  Fully anonymous, no reminders or other tracking of the
respondents

•  Descriptive statistics and ANOVA (Tamhane’s T2) in
SPSS 21.0

Questionnaire

1.  Ordering a copy of the medical record: how, why,
how many times?

2.  Interest in online access and other e-Health services

3.  Perceived beneﬁts and threats of such services

4.  Health information behaviour

5.  Self-perceived health

6.  Demographics

Respondents

Secondary or higher education /
Lower / Nor formal education
Internet access at home / No access
at home
1+ h Internet user per day / Less /
Non-users
Employed/Retired/Other
Born in Sweden/abroad
Male/Female
0%

20%

40%

60%

80%

100%

No difﬁculties to understand

I understood the parts I was
interested in

I understood the most written on the
medical record

4,2

4,25

4,3

4,35

4,4

4,45

Reasons to read

To engage my relatives in my healthcare
For Social Security Agency
To get an insurance
For another care provider
Follow-up of a visit
Uncertain whether I received correct care
Check some details
Overview of care history
General interest

0 0,5 1 1,5 2 2,5 3 3,5 4 4,5

Groups

Recurrent readers

Second-timers

First-timers

Why?

It helps to improve my healthcare

It is a premise for active participation
in care

To follow up of a visit

To get an overview of the earlier care
3,5 3,6 3,7 3,8 3,9 4 4,1 4,2 4,3 4,4 4,5

Attitudes

•  Are unlikely to ask
from family members
of relatives that the
two other groups
(2.48)

•  Do not want to read
possibly worrying
hypotheses online
(1.67)

Characteristics

•  Read medical literature

•  Member in patient organisations

•  Older

•  Female

•  Have worked in contact with healthcare

•  Use computers less frequently than the ﬁrst-timers

Second-timers

–  Most positive of all
to the possibility to
read the medical
records online
(4.37)

–  Most intrested in
self complementing
the record with
relevant
information (3.33)

Attitudes

•  Least interested in
reading their medical
record online (2.26)

Characteristics

•  Better self-perceived
health (than with
recurrent users) (3.93)

•  Least worried about
their health (2.42)

•  Least care visits (3.21)

Comparisons and context

•  Earlier ﬁndings on interest in reading medical records

–  Interest is low, ~0,4-4%

–  Data from USA, Denmark (1970s)

•  The case of Uppsala

–  11 000 copies ordered annually (-2012), ~ 300 000 patients
(3,7%)

–  Current data shows that

•  55 % ﬁrst-timers

•  19 % second-timers

•  22 % recurrent readers

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There is increasing confidence that cell therapies will soon play a role in the treatment of autoimmune disorders, but the extent of this impact remains to be seen. Early readouts on autologous CAR-Ts in lupus are encouraging, but manufacturing and cost limitations are likely to restrict access to highly refractory patients. Allogeneic CAR-Ts have the potential to broaden access to earlier lines of treatment due to their inherent cost benefits, however they will need to demonstrate comparable or improved efficacy to established modalities. In addition to infrastructure and capacity constraints, CAR-Ts face a very different risk-benefit dynamic in autoimmune compared to oncology, highlighting the need for tolerable therapies with low adverse event risk. CAR-NK and Treg-based therapies are also being developed in certain autoimmune disorders and may demonstrate favorable safety profiles. Several novel non-cell therapies such as bispecific antibodies, nanobodies, and RNAi drugs, may also offer future alternative competitive solutions with variable value propositions. Widespread adoption of cell therapies will not only require strong efficacy and safety data, but also adapted pricing and access strategies. At oncology-based price points, CAR-Ts are unlikely to achieve broad market access in autoimmune disorders, with eligible patient populations that are potentially orders of magnitude greater than the number of currently addressable cancer patients. Developers have made strides towards reducing cell therapy COGS while improving manufacturing efficiency, but payors will inevitably restrict access until more sustainable pricing is achieved. Despite these headwinds, industry leaders and investors remain confident that cell therapies are poised to address significant unmet need in patients suffering from autoimmune disorders. However, the extent of this impact on the treatment landscape remains to be seen, as the industry rapidly approaches an inflection point.

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Experiences and Attitudes of Patients Reading their Medical Records

1. Experiences and Attitudes of Patients Reading their Medical Records differences between readers and recurrent readers Isto Huvila1,2, Mats Daniels1, Åsa Cajander1 and Rose-Mharie Åhlfeldt2 1. Uppsala University 2. School of Business and Economics, Åbo Akademi University 3. University of Skövde

2. Information

9. Uppsala

10.

11. http://www.sustainsproject.eu

12. http://www.it.uu.se/research/hci/dome/

13. Empirical study •  Postal survey with possibility to answer anonymously on the web •  June-August 2012 •  Mailed to 1000 patients, ﬁnal sample N=354 (35,3 %) –  Fully anonymous, no reminders or other tracking of the respondents •  Descriptive statistics and ANOVA (Tamhane’s T2) in SPSS 21.0

14. Questionnaire 1.  Ordering a copy of the medical record: how, why, how many times? 2.  Interest in online access and other e-Health services 3.  Perceived beneﬁts and threats of such services 4.  Health information behaviour 5.  Self-perceived health 6.  Demographics

15. Respondents Secondary or higher education / Lower / Nor formal education Internet access at home / No access at home 1+ h Internet user per day / Less / Non-users Employed/Retired/Other Born in Sweden/abroad Male/Female 0% 20% 40% 60% 80% 100%

16. No difﬁculties to understand I understood the parts I was interested in I understood the most written on the medical record 4,2 4,25 4,3 4,35 4,4 4,45

17. Reasons to read To engage my relatives in my healthcare For Social Security Agency To get an insurance For another care provider Follow-up of a visit Uncertain whether I received correct care Check some details Overview of care history General interest 0 0,5 1 1,5 2 2,5 3 3,5 4 4,5

18. Interactions

19. Groups Recurrent readers Second-timers First-timers

20. Why? It helps to improve my healthcare It is a premise for active participation in care To follow up of a visit To get an overview of the earlier care 3,5 3,6 3,7 3,8 3,9 4 4,1 4,2 4,3 4,4 4,5

21. Attitudes •  Are unlikely to ask from family members of relatives that the two other groups (2.48) •  Do not want to read possibly worrying hypotheses online (1.67)

22. Characteristics •  Read medical literature •  Member in patient organisations •  Older •  Female •  Have worked in contact with healthcare •  Use computers less frequently than the ﬁrst-timers

23. Second-timers –  Most positive of all to the possibility to read the medical records online (4.37) –  Most intrested in self complementing the record with relevant information (3.33)

24. Attitudes •  Least interested in reading their medical record online (2.26)

25. Characteristics •  Better self-perceived health (than with recurrent users) (3.93) •  Least worried about their health (2.42) •  Least care visits (3.21)

26. Comparisons and context •  Earlier ﬁndings on interest in reading medical records –  Interest is low, ~0,4-4% –  Data from USA, Denmark (1970s) •  The case of Uppsala –  11 000 copies ordered annually (-2012), ~ 300 000 patients (3,7%) –  Current data shows that •  55 % ﬁrst-timers •  19 % second-timers •  22 % recurrent readers

27. Impact? Conclusions

28.

29.

30.

31. Huvila, I. Information Services and Digital Literacy: In search of the boundaries of knowing. Chandos, 2012.

32. Experiences and Attitudes of Patients Reading their Medical Records differences between readers and recurrent readers Isto Huvila1,2, Mats Daniels1, Åsa Cajander1 and Rose-Mharie Åhlfeldt2 1. Uppsala University 2. Åbo Akademi University 3. University of Skövde More information (e) isto.huvila@abm.uu.se (t) @ihuvila (w) (w) http://www.it.uu.se/research/hci/dome/ www.istohuvila.se

Experiences and Attitudes of Patients Reading their Medical Records

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